It's finally official. Today, 30th May 2012 I have been listed for a double-lung transplant at Harefield hospital!!
I've waited a very long time to be able to write this blog and I have no idea what I want to write but I'm just going to let it flow and we'll see what happens :) it may be all over the place as that is how my head feels right now, like mush, but hopefully it might make some sense :)...
I feel so excited but frightened at the same time, it's weird, right now I feel literally every emotion possible. As I stated in my last blog, there have been times when I didn't think it would ever happen, but it has and I'm absolutely over the moon that I'm finally listed!
It's hard to put into words just how I feel because I'm not sure I even know what I'm feeling, lol! I'm sooo proud of what I've achieved, the fact I increased my weight by almost 2 stone, going from a very scary BMI of 13.3 to a healthy 18, improving my average blood sugar from 16% to 9% - all this while getting more and more sick, I can see why a lot of medical experts didn't think it would happen and from their persepective, what I've done was pretty insane and defies the odds! It's extremely difficult for us CFer's to gain weight and control our sugars when we are well so for me to have done all that as ill as I am is an achievement :) and the fact I survived 3 lung serious collapses, infection after infection, setback after setback, yet I'm still standing!
It was so important for me when I had my actual assessment because it was suddenly real, that I'd done enough, even if I'd never got on the list I'd still got to the point where I was safe enough to transplant, but to think now I'm a giant step closer. Literally, I could get a call tomorrow, unlikely I know, especially with my blood group being what it is, my wait is expected to be 1 year to 18 months but it actually can happen any day.
Before I was listed, I was seeing myself going downhill fast, day-by-day. Yet there was no hope to cling onto, no light at the end of the tunnel, I was absolutely stuck in limbo but I still kept the belief and I carried on.
But now it's different, no matter how ill I feel or how much of a bad day I am having, I have that hope of a call, and that is something I can hold onto because a call could come at literally any second, it's exciting but damn right nervewracking at the same time!!!
I don't think anyone can ever be prepared for a transplant or all the feelings that come before and after, even though it's been 1 year and 7 months since I was told I needed to be listed, it still hasn't sunk in and I don't think it ever will, well not until it's happened anyway, I know I'm a lot more unwell now than I was then but I still feel weird, it's like I can't believe I am at this stage, but then I see myself on 24 hour oxygen, permanenent IV's, morphine and heaps of medication, then I realise I actually do need this transplant more than ever and now I finally have that opportunity :)
I am keeping everything crossed that I get new lungs, I need to stay well enough so when the call comes I will be ready, I can't let the weight/diabetes slip now I need to maintain this standard and keep going. The reality of the transplant list is that 50% of people in my situation aren't going to get the transplant, but I know I'm going to get there :) I've fought way too hard to get to where I am today, I'm not stopping now, no chance!!!
New lungs, new lungs, new lungs, there is no other option now :)!!!!!!
Again, I just want to say a huge thank you to everyone for the continuous support, it really has been so motivating and has genuinely helped me to get to where I am today, where is that I hear you ask?! ...On the transplant list!!!
Thank you for reading :)
xxx
Wednesday, 30 May 2012
Thursday, 24 May 2012
I'm Being Put On The Transplant List!
Well to say my trip to Harefield was a success is an understatement :).
We decided we would find a hotel nearby and stay over the night before because my appointment was 9am and trying to get into London for that time of the morning would've meant traffic galore and a VERY early start. Harefield have accomodation for visitors/family/friends etc, so we decided to stay there because all the hotels around the area were rather expensive, so we paid £50 to stay in the accomodation but because of our benefits (esa and carers allowance) we got it for £24.50 so that was fine, it wasn't the nicest room, the beds were very hard and it was like being in a sauna, despite having the fan on and window open! I was absolutely exhausted and crashed out quite quickly, but I did keep waking up all night restless, sweating and unwell so I didn't get the best night sleep, I also was extremely nervous about the appointment so that didn't help! We'd also been to TGI Fridays in Watford for dinner beforehand where I had chicken strips for starters and a full rack of Jack Daniels ribs and chips for main, then a yummy pina colada style fruit smoothie for dessert, alongisde unlimited coke I was, to put it bluntly, stuffed :D It's easily my favourite restaurant just very disappointing that the closest one to Ipswich is 1 hour away :(
Anyway, the next morning I very reluctantly woke up at 8.30, I just couldn't be bothered and I don't function well in the morning lol, so after my half-hearted attempt at putting make up on I dragged myself (wheeled) to the hospital. It was very sunny and hot which meant I got to wear my lovely playsuit, so I was happy I got the chance to show it off, considering I don't get out much and particularly always seem to go out when it's raining and cold, so it was nice to finally wear it :)
Here is a photo of us in the car, just about to begin our journey, I decided not to have my o2 on in this photo because I thought I needed a new updated photo on here!
.JPG)
The appointment started with the general, weight (42kgs) blood pressure, temperature etc. My heart rate was rather high, 154 resting and my temperature was 37.8 so that was a bit high and she asked me to take some paracetamol but I had some co-codamol instead because I was in a lot of pain anyway, so that seemed to work although I was sweating like mad all day, yuck. My weight was 44kgs last time I was at Harefield but I explained to them I did have a bad sickness bug which knocked me and my weight for six, my appetite didn't recover immedietly and it wasn't until I started my most recent course of IV's that I started eating a lot again, thankfully it's on the up (it had gone down to 40kgs!!! eek.) So at least it was going back in the right direction and they were quite happy with that. I had what seemed like bottle after bottle of blood taken from one tiny little vein and then had to do a urine and sputum sample, all the basic 'check up' stuff.
I then had to meet with their dietician and she seemed happy with what I was doing and encouraged me to continue with the Megace as it was clearly helping my appetite, she was also happy with the 'Pro-Cal powder' we were adding to my meals and said we could probably up that if we could fit it in anywhere else, currently Josh makes me a large saucepan full of bolognaise and he puts around 5 powders in which adds an extra 500 calories to the meal, I then eat that over the course of the day, or the following day so we can add more into various other foods. She also said when I'm unwell and don't have an appetite, if I can tolerate it, I should do Calogen, which is 60mls of basically pure fat but strawberry flavour, it tastes horrific but I can put it down my feeding tube, I had been doing it before but it made me feel extremely bloated and put me off food so I stopped doing it as often, but she said it would be beneficial when I don't have an appetite to take the pressure off needing to eat and using that. We also decided they would order in soya feed ready for after transplant, obviously you can't eat straight after transplant due to ventilator tubing etc, so you have to be tube fed and with my milk allergy I can only have soya, so they've ordered that in ready for me.
I then had lunch, a couple of cheese and ham toasties and some lucozade to give me energy because I was practically asleep, lol. I then had an x-ray and an ECG. This was all quick and easy then I just had to wait for my turn to see Dr Carby, the transplant doctor. I kept myself occupied playing games on my iPad but in my head, I was going crazy, nerves, fear, every thought I could possibly think came into my head, how would I cope if they said no, could I take another 'wait and see' I just had no idea what I would do.
Finally the waiting was over and I was called in, Dr Carby is a lovely, welcoming man and put me at ease straight away. He basically said he was very happy with the diabetic care I'd received since the 2-day assessment, he has asked Papworth to see me more often because we needed to keep it under control, I explained that I had took my foot off the pedal because I was working so hard trying to gain weight I hadn't always remembered the importance of insulin, he seemed very happy with the improvements and he understood the weight situation. He then said "well we can see you are clearly very unwell and transplant is your only option really now so it's upto you, we can put you on the list today if you want, or you can go away and think about it, or let us know when you'd like to go on" I almost burst into tears and if I wasn't so ill and stuck in my wheelchair I would've jumped up and hugged him, I said now!!! Unfortunately, my appointment was late and the co-ordinator said they didn't have time to do it then and she is on holiday until Monday, so I have to wait but I will be listed on Monday :D:D they will do all the paperwork then give me a call and it will be go go go. Just waiting for that important call for new lungs!!!
I'm so proud of myself for getting this far, even if I don't get the call in time I'm still happy that I at least made it to the list. When transplant was first mentioned to me in October 2010, I weighed 32kgs with a BMI of 13.3, my average blood sugar was 16% and I was absolutely miles away from being listed. I got my weight to 44kgs which was a BMI of 18.1, my average blood sugar was 10% and I'd come a very long way. Yes, I was a damn lot iller, 3 lung collapses, 24 hour oxygen, permemant IV's, and more hospital stays in that time than I'd had in my entire life... But I did it.
I'm pretty sure my CF team didn't think it would happen, there were times when a few of my CF consultants asked if I wanted to basically give up because the battle to get on the list would be hard and I remember the exact words they said to me - 'it's not impossible, but we think it's very unlikely'... Never tell me I can't do something, because I will do it and I will prove you wrong :D I'm very stubborn and I would have never in a million years given up, what would be the point?!
So I'm so glad I continued to pursue my dream of getting on the list and now it's here, I've done and I'm now one step away from new lungs, just got to wait patiently for that important call and my new life can begin :)
In the mean time, we still have a wedding to plan! Which is extremely exciting, but wouldn't it be great to get lungs really quicky and have the perfect wedding day, new lungs, new life.
I want to say a huge thank you to everyone who has supported me so far along this journey, I've had so many amazing comments of support from so many people. I admit there were times when I felt like it wasn't worth carrying on, but I had the motivation from everyone urging me on and keeping me positive, giving up was never an option. Thank you to the 'Evening Star' for their continued support and constant articles in the newspaper raising awareness for CF and organ donation, they encouraged me to share my story 1 year ago and I'm go glad I did, so thanks to them for everything they've done and continue to do :)!
Most importantly, Josh has been so vital in getting me on the list, he's been my shoulder to cry on many times and I'm so thankful, he always kept me focussed and has done his bit in my weight gain and sugar control by making me extra fatty meals and always makes sure I do my insulin, just in case I forget, so it's a massive thanks to him because he's just as big a part of me getting on the list as I am... Also my Mum and other close relatives, without them I probably wouldn't be where I am now, they have been amazing and kept me on the right path.
And also thank you you to everyone who reads my blog and the people who don't even know me but have sent me messages of encouragement, you don't know how much you help, even a tiny little message saying get well, or keep going it really does brighten my day and makes me feel that people really do care about me. Also a little mention to Rachel who was inspired by my story and decided to run a marathon for the CF Trust.
So that's that, one chapter of my story done, a BIG thank you for reading and here's to the next one - new lungs :)
xxx
We decided we would find a hotel nearby and stay over the night before because my appointment was 9am and trying to get into London for that time of the morning would've meant traffic galore and a VERY early start. Harefield have accomodation for visitors/family/friends etc, so we decided to stay there because all the hotels around the area were rather expensive, so we paid £50 to stay in the accomodation but because of our benefits (esa and carers allowance) we got it for £24.50 so that was fine, it wasn't the nicest room, the beds were very hard and it was like being in a sauna, despite having the fan on and window open! I was absolutely exhausted and crashed out quite quickly, but I did keep waking up all night restless, sweating and unwell so I didn't get the best night sleep, I also was extremely nervous about the appointment so that didn't help! We'd also been to TGI Fridays in Watford for dinner beforehand where I had chicken strips for starters and a full rack of Jack Daniels ribs and chips for main, then a yummy pina colada style fruit smoothie for dessert, alongisde unlimited coke I was, to put it bluntly, stuffed :D It's easily my favourite restaurant just very disappointing that the closest one to Ipswich is 1 hour away :(
Anyway, the next morning I very reluctantly woke up at 8.30, I just couldn't be bothered and I don't function well in the morning lol, so after my half-hearted attempt at putting make up on I dragged myself (wheeled) to the hospital. It was very sunny and hot which meant I got to wear my lovely playsuit, so I was happy I got the chance to show it off, considering I don't get out much and particularly always seem to go out when it's raining and cold, so it was nice to finally wear it :)
Here is a photo of us in the car, just about to begin our journey, I decided not to have my o2 on in this photo because I thought I needed a new updated photo on here!
.JPG)
The appointment started with the general, weight (42kgs) blood pressure, temperature etc. My heart rate was rather high, 154 resting and my temperature was 37.8 so that was a bit high and she asked me to take some paracetamol but I had some co-codamol instead because I was in a lot of pain anyway, so that seemed to work although I was sweating like mad all day, yuck. My weight was 44kgs last time I was at Harefield but I explained to them I did have a bad sickness bug which knocked me and my weight for six, my appetite didn't recover immedietly and it wasn't until I started my most recent course of IV's that I started eating a lot again, thankfully it's on the up (it had gone down to 40kgs!!! eek.) So at least it was going back in the right direction and they were quite happy with that. I had what seemed like bottle after bottle of blood taken from one tiny little vein and then had to do a urine and sputum sample, all the basic 'check up' stuff.
I then had to meet with their dietician and she seemed happy with what I was doing and encouraged me to continue with the Megace as it was clearly helping my appetite, she was also happy with the 'Pro-Cal powder' we were adding to my meals and said we could probably up that if we could fit it in anywhere else, currently Josh makes me a large saucepan full of bolognaise and he puts around 5 powders in which adds an extra 500 calories to the meal, I then eat that over the course of the day, or the following day so we can add more into various other foods. She also said when I'm unwell and don't have an appetite, if I can tolerate it, I should do Calogen, which is 60mls of basically pure fat but strawberry flavour, it tastes horrific but I can put it down my feeding tube, I had been doing it before but it made me feel extremely bloated and put me off food so I stopped doing it as often, but she said it would be beneficial when I don't have an appetite to take the pressure off needing to eat and using that. We also decided they would order in soya feed ready for after transplant, obviously you can't eat straight after transplant due to ventilator tubing etc, so you have to be tube fed and with my milk allergy I can only have soya, so they've ordered that in ready for me.
I then had lunch, a couple of cheese and ham toasties and some lucozade to give me energy because I was practically asleep, lol. I then had an x-ray and an ECG. This was all quick and easy then I just had to wait for my turn to see Dr Carby, the transplant doctor. I kept myself occupied playing games on my iPad but in my head, I was going crazy, nerves, fear, every thought I could possibly think came into my head, how would I cope if they said no, could I take another 'wait and see' I just had no idea what I would do.
Finally the waiting was over and I was called in, Dr Carby is a lovely, welcoming man and put me at ease straight away. He basically said he was very happy with the diabetic care I'd received since the 2-day assessment, he has asked Papworth to see me more often because we needed to keep it under control, I explained that I had took my foot off the pedal because I was working so hard trying to gain weight I hadn't always remembered the importance of insulin, he seemed very happy with the improvements and he understood the weight situation. He then said "well we can see you are clearly very unwell and transplant is your only option really now so it's upto you, we can put you on the list today if you want, or you can go away and think about it, or let us know when you'd like to go on" I almost burst into tears and if I wasn't so ill and stuck in my wheelchair I would've jumped up and hugged him, I said now!!! Unfortunately, my appointment was late and the co-ordinator said they didn't have time to do it then and she is on holiday until Monday, so I have to wait but I will be listed on Monday :D:D they will do all the paperwork then give me a call and it will be go go go. Just waiting for that important call for new lungs!!!
I'm so proud of myself for getting this far, even if I don't get the call in time I'm still happy that I at least made it to the list. When transplant was first mentioned to me in October 2010, I weighed 32kgs with a BMI of 13.3, my average blood sugar was 16% and I was absolutely miles away from being listed. I got my weight to 44kgs which was a BMI of 18.1, my average blood sugar was 10% and I'd come a very long way. Yes, I was a damn lot iller, 3 lung collapses, 24 hour oxygen, permemant IV's, and more hospital stays in that time than I'd had in my entire life... But I did it.
I'm pretty sure my CF team didn't think it would happen, there were times when a few of my CF consultants asked if I wanted to basically give up because the battle to get on the list would be hard and I remember the exact words they said to me - 'it's not impossible, but we think it's very unlikely'... Never tell me I can't do something, because I will do it and I will prove you wrong :D I'm very stubborn and I would have never in a million years given up, what would be the point?!
So I'm so glad I continued to pursue my dream of getting on the list and now it's here, I've done and I'm now one step away from new lungs, just got to wait patiently for that important call and my new life can begin :)
In the mean time, we still have a wedding to plan! Which is extremely exciting, but wouldn't it be great to get lungs really quicky and have the perfect wedding day, new lungs, new life.
I want to say a huge thank you to everyone who has supported me so far along this journey, I've had so many amazing comments of support from so many people. I admit there were times when I felt like it wasn't worth carrying on, but I had the motivation from everyone urging me on and keeping me positive, giving up was never an option. Thank you to the 'Evening Star' for their continued support and constant articles in the newspaper raising awareness for CF and organ donation, they encouraged me to share my story 1 year ago and I'm go glad I did, so thanks to them for everything they've done and continue to do :)!
Most importantly, Josh has been so vital in getting me on the list, he's been my shoulder to cry on many times and I'm so thankful, he always kept me focussed and has done his bit in my weight gain and sugar control by making me extra fatty meals and always makes sure I do my insulin, just in case I forget, so it's a massive thanks to him because he's just as big a part of me getting on the list as I am... Also my Mum and other close relatives, without them I probably wouldn't be where I am now, they have been amazing and kept me on the right path.
And also thank you you to everyone who reads my blog and the people who don't even know me but have sent me messages of encouragement, you don't know how much you help, even a tiny little message saying get well, or keep going it really does brighten my day and makes me feel that people really do care about me. Also a little mention to Rachel who was inspired by my story and decided to run a marathon for the CF Trust.
So that's that, one chapter of my story done, a BIG thank you for reading and here's to the next one - new lungs :)
xxx
Monday, 21 May 2012
IV's, Wedding Plans, Harefield and Everything Else!
Again, I apologise for my lack of blogging, I've been so unwell lately I have barely done anything other than lay on the sofa, eat food and play iPad games. I have been in a great deal of pain, particularly my lungs, but also my arthritis and my mouth/lips/throat are very sore due to increasing my morphine dose (oramorph) I have needed to use it a lot more because I've been struggling with the pain, but I have an intolerance/allergy to it and it causes my lips to become very dry, cracked and sore, also my tonsils and tongue swell up and it's very uncomfortable but it's the strongest pain relief I can have really and without it, I'd be suffering a heck of a lot more. So I have to deal with it, just depending on extra lip-balm and lots of water to keep my mouth and lips hydrated.
I'm back on IV's again, Ceftaz, Aztreonam and Tazocin - I think it's going to be a permanent thing now as everytime I stop IV's (literally for a week maximum) I go so downhill within the first few days, so as much as I hate being on IV's, with all the side effects and the time and effort it takes to mix them all up, they do keep me feeling more 'human' and I can at least walk myself to the loo without needing help, it's annoying, but just another thing to add to my list of 'stupid CF stuff' haha!!
I have my appointment at Harefield on Wednesday 23rd May, to be fair I'm not 100% sure what the plan is, nobody has really told me anything, as far as I am aware, the reason I'm not on the list is because my average blood sugar was a little too high for their liking and it was my fault, I had spent too much time trying to gain weight, so I took my foot off the 'diabetes pedal' a bit and stepped too much on the 'food pedal,' so I wasn't controlling my sugars well enough I needed to get the balance just right and I hadn't, it then showed up in my blood tests and they were slightly concerned that it had increased (in April 12%, since November when it was 9%) but I've spent every single minute since that phone call making sure every meal, every snack, every fizzy drink is covered by insulin and I hope when they repeat the blood test on Wednesday my numbers will have got better. I also have to meet with their diabetic team to get a 'plan' anyway, I've also got to see the psychologist and their dieticians.
So I'm hoping I will be listed soon, but at the same time I have no idea what is going on! Papworth aren't sure either because they keep asking me, I was hoping they had a clue but they were none the wiser. I remember the phone call from Harefield just after my 2-day assessment, saying "we want to offer you a place on the transplant list, but we need you to meet our diabetic team so we can get your sugars under control in preperation for transplant" so to me it seemed like as long as I worked on it between then and now, and then met with their team and got a bit of a plan of action of how to keep them normal, then I will be put on the list??
I don't know, to be fair I'm a lot more unwell now than I was when I had my assessment, I'm now on 24 hour oxygen, I can't take it off at all so I've been pretty restricted to what I can do as I'm not 100% confident wearing it in public, it's embarrassing especially when people look at me :( I also struggle with a lot more pain now and after having 3 lung collapses since Feb, my health has took a big knock, I think if I was to do lung function it would be significantly lower, I still don't know if I'll be able to do it on Wednesday because my lung collapse still hasn't completely gone, it's very small but still there, so I doubt they will let me as it's too much of a risk. So I'm hoping more than ever that they do list me because it's getting a little bit scary and annoying feeling like precious time is wasting, I could've been on the list for over a month now and you never know I might've had a call :/ I hate being stuck in this limbo place, not getting better and there is currently no light at the end of tunnel, so I'm literally praying they list me ASAP!!!
The final and most exciting part of this blog post is that Josh and I have finally decided to bite the bullet and get married!!! :D
We were going to wait until after transplant, but as I've explained I have no idea if this is even going to happen, I may never get on the list and now I'm getting iller and iller everyday so I don't know how long I'd be able to hang on and if I get on the list, how long I might have to wait for a call. But knowing we have the wedding to focus on takes all the focus away from transplant and feeling ill, planning a wedding takes up literally every minute of everyday so I'm hoping I can focus on that alongside (hopefully) waiting for a transplant! It also gives me motivation to hang on, I had been feeling a little down (hence the lack of blogging) and at times I'd felt a bit defeated it's been very difficult but now I know I can't go anywhere, I have to hang on and marry Josh :) CF will not win this time!!!
We are going to get married around April 2013, so it's not too long to wait, but still far enough away that we have plenty of time to plan every little detail to perfection. It's been very exciting looking at venues and particularly wedding dresses! I'm excited to go and try dresses on in the next few weeks, but first, on Thursday, we are going to view what we've deemed our perfect venue, it's quite expensive but it's absolutely gorgeous and we absolutely love it!!! The fact Josh or I can't work now means the only money we have coming in goes straight on bills and the mortgage, without too much left over, but thankfully we do have some savings and we have the money from our engagement party which has all gone into our wedding fund. It's the most important day of our lives and we want it to be great and memorable - I know money doesn't buy you happiness, but I have no idea what my future holds or how long I will be here, so at least I know I can marry the man I absolutely love and adore, on our perfect day with no regrets :)
Thank you for reading :)
xxx
I'm back on IV's again, Ceftaz, Aztreonam and Tazocin - I think it's going to be a permanent thing now as everytime I stop IV's (literally for a week maximum) I go so downhill within the first few days, so as much as I hate being on IV's, with all the side effects and the time and effort it takes to mix them all up, they do keep me feeling more 'human' and I can at least walk myself to the loo without needing help, it's annoying, but just another thing to add to my list of 'stupid CF stuff' haha!!
I have my appointment at Harefield on Wednesday 23rd May, to be fair I'm not 100% sure what the plan is, nobody has really told me anything, as far as I am aware, the reason I'm not on the list is because my average blood sugar was a little too high for their liking and it was my fault, I had spent too much time trying to gain weight, so I took my foot off the 'diabetes pedal' a bit and stepped too much on the 'food pedal,' so I wasn't controlling my sugars well enough I needed to get the balance just right and I hadn't, it then showed up in my blood tests and they were slightly concerned that it had increased (in April 12%, since November when it was 9%) but I've spent every single minute since that phone call making sure every meal, every snack, every fizzy drink is covered by insulin and I hope when they repeat the blood test on Wednesday my numbers will have got better. I also have to meet with their diabetic team to get a 'plan' anyway, I've also got to see the psychologist and their dieticians.
So I'm hoping I will be listed soon, but at the same time I have no idea what is going on! Papworth aren't sure either because they keep asking me, I was hoping they had a clue but they were none the wiser. I remember the phone call from Harefield just after my 2-day assessment, saying "we want to offer you a place on the transplant list, but we need you to meet our diabetic team so we can get your sugars under control in preperation for transplant" so to me it seemed like as long as I worked on it between then and now, and then met with their team and got a bit of a plan of action of how to keep them normal, then I will be put on the list??
I don't know, to be fair I'm a lot more unwell now than I was when I had my assessment, I'm now on 24 hour oxygen, I can't take it off at all so I've been pretty restricted to what I can do as I'm not 100% confident wearing it in public, it's embarrassing especially when people look at me :( I also struggle with a lot more pain now and after having 3 lung collapses since Feb, my health has took a big knock, I think if I was to do lung function it would be significantly lower, I still don't know if I'll be able to do it on Wednesday because my lung collapse still hasn't completely gone, it's very small but still there, so I doubt they will let me as it's too much of a risk. So I'm hoping more than ever that they do list me because it's getting a little bit scary and annoying feeling like precious time is wasting, I could've been on the list for over a month now and you never know I might've had a call :/ I hate being stuck in this limbo place, not getting better and there is currently no light at the end of tunnel, so I'm literally praying they list me ASAP!!!
The final and most exciting part of this blog post is that Josh and I have finally decided to bite the bullet and get married!!! :D
We were going to wait until after transplant, but as I've explained I have no idea if this is even going to happen, I may never get on the list and now I'm getting iller and iller everyday so I don't know how long I'd be able to hang on and if I get on the list, how long I might have to wait for a call. But knowing we have the wedding to focus on takes all the focus away from transplant and feeling ill, planning a wedding takes up literally every minute of everyday so I'm hoping I can focus on that alongside (hopefully) waiting for a transplant! It also gives me motivation to hang on, I had been feeling a little down (hence the lack of blogging) and at times I'd felt a bit defeated it's been very difficult but now I know I can't go anywhere, I have to hang on and marry Josh :) CF will not win this time!!!
We are going to get married around April 2013, so it's not too long to wait, but still far enough away that we have plenty of time to plan every little detail to perfection. It's been very exciting looking at venues and particularly wedding dresses! I'm excited to go and try dresses on in the next few weeks, but first, on Thursday, we are going to view what we've deemed our perfect venue, it's quite expensive but it's absolutely gorgeous and we absolutely love it!!! The fact Josh or I can't work now means the only money we have coming in goes straight on bills and the mortgage, without too much left over, but thankfully we do have some savings and we have the money from our engagement party which has all gone into our wedding fund. It's the most important day of our lives and we want it to be great and memorable - I know money doesn't buy you happiness, but I have no idea what my future holds or how long I will be here, so at least I know I can marry the man I absolutely love and adore, on our perfect day with no regrets :)
Thank you for reading :)
xxx
Wednesday, 25 April 2012
Sorry It's Been Soooo Long!
I have a lot to blog about as I've been away for so long, for some reason I just didn't have it in me to blog, there was so much going on but everytime I sat down, mind full of ideas but staring at the empty page and nothing came out, it was a serious case of writers block - I knew what I wanted to say, I just couldn't get the words out! So I decided to take a bit of break, it's been well over a month since my last blog and I have a lot to update you all on, so prepare for a probably long-ish blog about my transplant assessment, whether I'm on the list or not, my birthday, 3rd lung collapse, Mum's 40th birthday weekend etc, I'm sorry if I bore you to death, but it's a biiiiiiig catch-up :)!
I had my wonderful party weekend for my 21st birthday.. I came out of hospital on the Friday (16th March) the night before my birthday, where I spent the evening round my cousins house with my Dad's family. We had a poker night, but also cake, champagne, presents, KFC and other goodies :) It was a great night and they'd put so much effort in I was really pleased as I thought it was just going to be a poker night, so I was really shocked and happy when all the surprises kept coming. It was a great night and I came 3rd in poker, I had got up that morning at 8am (woken by the nurses) then we travelled home from Papworth and I didn't have any sleep, I was in pain so I did struggle through the night and by midnight I was very tired and probably a bit grumpy lol but we all went home and I had a nice sleep :)
The bad thing was, I'd had an allergic reaction to something in the food I ate whilst in Papworth, I normally take antihistamine tablets with foods I'm unsure of, obviously at home I know what I'm eating and what I put into my food, but when I eat off the menu or food from the canteen, I can never be sure so I was having an IV form of antihistamine whilst in hospital, but what I didn't realise was they stopped it on the Wednesday for some reason it was crossed off, I then ate something with whatever it is I'm allergic to (I'm not 100% sure but I think it's a type of spice - coriander/cumin etc) and my lips swelled up like a fish, my entire mouth was sore, with painful spots and bumps inside my cheek and my lips, my tongue was swollen, tonsils and glands were up and I had no taste in my mouth - I also had thrush in my throat from the strong IV's I was on (so I now have to take Fluconazole when I have IV's to stop the thrush) so unfortunately I wasn't really able to eat or drink for a few days until it settled down, which meant no alcohol and also very little food at my party :(
So onto my party we go... I had a fantastic night, there were about 70 people there, it was at my Mum's house as I didn't have enough money to pay for a hall and my house is big, but not big enough to hold 70 people! We had music playing all night and the living room was the 'chatting' area, where people went to chill out on the sofa where it wasn't so loud, I did spend quite a lot of time in the living room because I was really ill so I had to stay sitting down most of the night :( but I had a great time still! I couldn't eat any of the lovely chilli Mum had made because of my mouth being so sore, it just burnt, also I had 1 shot of corky's and I almost cried in pain, so stuck to water and tea all night lol...! It was nice to be sober though because I could be a good host and see everyone enjoying themselves, which brought a smile to my face! :) I had bought 1 bottle of Sambuca, 2 bottles of corkys and 2 bottles of Apple sours so I went round with 'shot trays' it was great being the host, I was handing the shots out and I think everyone probably regretted having so many the next day haha!
I'd bought a lovely blue dress from Lipsy but before I went into hospital it was a bit loose so I was dreading trying it on for my party because I wanted to look nice and it just didn't, but I ate so much food in hospital (4 meals a day + lots of snacks) that by the time I came out I had gained about 4lbs, I put the dress on and it fit really well! No longer loose and baggy, but tight and pretty, I was so pleased and everyone said it looked nice so I was really happy with it in the end!
I got a lot of presents and money from everyone, I also got a lot of '21' things, mugs, bears, glasses, keyrings etc.
The worst bit about the night was I ended the night being very sick, I was the sober one being sick, all the drunk people weren't lol, oh the irony!! It was because I was coughing so much it made me very sick. So I went home, about 3am-ish, I was having pains and 'bubbling' in my lung around the area where my lung had collapsed previously, so I was really worried it had collapsed again.
I held on as long as I could, but in the end I called Papworth on the Thursday morning (the 22nd March) my clinic appointment was the Friday anyway, but I was telling them about the pains and that I was worried my lung had collapsed again, I was finding it very difficult to breathe, I couldn't take my oxygen off without practically gasping for air, the pains were so unbearable even my morphine (oramorph) wasn't touching the pain, so I'd decided to go into hospital on the Friday whether my lung was collapsed or not, I felt I needed a rest. Also my transplant assessment was on the 2nd & 3rd April so I wanted to be as well for that as possible, during my stay before they said I was borderline kidney failure because my body just decided to stop playing fair, so I was worried about being refused transplant if my kidneys were messed up, but thankfully after lots of tablets, fluid IV's and various other things, they returned to normal and were no longer an issue, but I wanted them to be closely monitored while I was in hospital because I didn't want anything ruining my chances of getting on the list.
I was in hospital for 12 days and Josh stayed with me the whole time, they got him a little bed and although it was horrible for him and me, we got through it. My lung had collapsed again but thankfully it wasn't bad enough to need a chest drain, although after the 12 days it was still collapsed, it hadn't got any worse but at the same time it hadn't got any better, but the plan was after I'd got back from Harefield on the Tuesday I was going to go home the next morning.
Monday the 2nd came and we were transported to Harefield hospital in London via an ambulance from Papworth, we left really early as I had to be there for 9am. When we arrived I was shown to my room which was nice and big, I had to do 24 hour urine collection but as I'd come from another hospital I had to be 'barriered' which basically meant I wasn't allowed to leave my room in case I had MRSA, so except for tests I was confined to my 4 walls, this meant I had to use a commode which was awful because I just find them so difficult to use! But I wee'd in a jug for 24 hours, which was an experience lol, until I'd finished the 24 hour collection then I could wee normally but still in the commode grrr lol!!
I had about 30 bottles of blood taken, my PICC line had decided it was the perfect time to stop bleeding, THANKS! So I had to have the blood taken from my veins, but thankfully I have one good vein which always works, if you hit it right, it bleeds and they got it in first time woop! I then had to have another blood test the following morning after fasting, I wasn't allowed to eat from midnight, also because I was having an ultrasound so I had to starve :(:(
I also had an ECG on the first day (heart tests) a chest x-ray and lots of chats with various people. The second day was a lot more busy, I had to have a CT Scan of my chest and they also did a DEXA scan, which is a scan of your bone density at the same time, I then had an ultrasound of my entire abdomen, liver, kidneys, spleen, womb, etc. Then I went back to my room and had food, yay! I was so hungry after not being able to eat all night, I decided to have a pot noodle then this lady came in and was talking for so long it went cold, but I was too hungry so I ate it, lol. They wanted to check my lung collapse hadn't got worse, I wasn't allowed to do lung function tests because the force of blowing out could cause a serious collapse as it was already half way there! But they decided I could still do the 6 minute walk test, which basically means you have to walk up and down a corridor for 6 minutes, walk as much as you can, but there are chairs if you need to sit down, I stopped quite a few times to cough and get my breath back but I tried to walk as much as I could, the idea is to say how breathless you are and how weak your muscles feel, because it's very important to keep strength in your muscles for post-transplant recovery, the weaker you are, the longer it takes to recover. I got to 9/10 on the breathless scale but only 3.5/10 for muscle weakness, I feel I haven't lost too much of my strength which is good, the physio gave me exercises to do at home, just simple reps lifting a can of coke or something 15-20 times once or twice a day, and a stretching exercise for my legs which works the muscles along the back of your leg and should keep them nice and strong without doing anything that would exhaust me or make me lose weight. I had my oxygen on during the whole test as I always need it on when exercising, my oxygen levels dropped quite low, down into the 70's towards the end of the test but thankfully when I stopped to get my breath back, they went back up again.
The worst test I had was easily the arterial blood gas, this is a blood test on the inside of your wrist, they have to find an artery and take blood from it, and unfortunately, arteries aren't on the surface so this means putting the needle in quite far then almost 'digging around' to find it, it hurt a lot I'm not going to lie, they had a go on my right wrist but he couldn't get any blood at all, so then he had another go on my left and did manage to get blood, then I didn't hear anything about it until one of the nurses told me that evening that unfortunately they didn't get enough blood so I had to have another go the next day :( but they were going to get an anesthetist to do it and he would use some local to hopefully numb the area. So I spent the entire second day absolutely dreading it, petrified about having it done again and the guy didn't come until about 2pm so I had ages to worry.. Thankfully the local worked and it was just slightly uncomfortable compared the it being extremely painful without the local, so it definitely helped and he knew exactly what he was doing, hit the artery straight away and got plenty of blood out, so that was all fine in the end!
Then I had to chat with the transplant co-ordinator and the pallaitive care team before I could go home. The co-ordinator, Brian, was lovely, I'd met him before anyway but he is very nice and puts you at ease, he had to go through this booklet with me which explains everything about transplant, the good and the bad, from now until the end - it talks about all the immuno-suppressants, what tablets you'll be on, what side-effects you'll get (most of them are not nice at all) the risks, rejection etc. He also explained all the statistics, survival rates etc. it wasn't fun to hear, but in the last 3 years they haven't had anyone die on the operating table which is my worst fear, so at least that was reassuring. They have to give you extreme worst case scenario but it wasn't nothing I didn't already know. The good thing is I have 0% antibodies, this means I can receive a transplant from all of the population (who are the right match for me, blood group O, my height etc) but if you have 50% antiobodies or something, this means 50% of the 'perfect matches' wouldn't actually be able to give you an organ as it would instantly reject, so having 0% is good, but it also means I could get a few more falses alarms, as when someone is called for transplant and they have say 30% antibodies, they call in a 'backup' in case their antibodies match, then I'd get the lungs, but if they are a perfect match for the other person and the antibodies aren't the same, they would get the lungs, so I'm absolutely thrilled to have 0% but at the same time, could get a few more false alarms, but in a way I don't mind having a false alarm, I'd quite like to go through it all and see exactly how it all goes, so the next time I'm ready, probably weird but there we go...
Anyway, I went home from Papworth on the Wednesday and I was going to be called by Harefield on the Thursday to say whether I was going to be put on the list or not.. The phone call came and they started by saying 'we want to offer you a place on the transplant list' so obviously I was super happy, but then they said 'but...' and my heart sank, basically between my first assessment in November and this one in April my average blood sugar had increased from 9% to 12% which is not good, I know it's my fault, I was so focussed on trying to gain weight, I forgot how important my insulin was with everything I ate, so I let it slip a bit, but anyway they want me to see their diabetic team in clinic to have a plan and also as my kidney function was a little low (as expected) they need to start me on a tablet to protect them, the appointment for this clinic is the 23rd May so just under a month. They will hopefully be putting me on the list after this, I hope. I'm not 100% sure, but I will find out when I go to the clinic.
That's about everything, my lung is still collapsed so I'm having to be careful what I do, I was in Papworth again from the 11th to the 18th, just for another rest and more IV's, I'm now on 24 hour oxygen which is annoying but it does help with my breathing so as much as I hate it and feel I'm getting a lot worse, if it helps then I guess I have to put up with it.
We went away for my Mum's (early) 40th birthday this weekend, it was great fun, we went and stayed in a very posh mansion house, me and Josh, mum and stepdad, my nanny and grandad, auntie uncle, cousins, sister + her fiance etc. we played pool tournaments, quizzes, murder mystery, other games and just had a great time, we had KFC on the Friday, a BBQ on the Saturday, then chilli/curry with jacket potatoes on the Sunday, the house was huge so it was a struggle walking around and thankfully my oxygen tubing from my concentrator is very long so I was able to walk from the living room to the kitchen with it attached and my bedroom was right at the top of the stairs, so we just sent it straight up over the bannister and into my room. I was on IV's, so I still had to do them while there and I did struggle a lot with pain and breathlessness, but it's not everyday you get to do something like that so I made sure I made the absolute most of it and spending all that precious time with my family was amazing :)
I'll leave you with a photo of all of us doing the Murder Mystery at the weekend, I was supposed to be a 'sexy secretary' lol.
Thank you for reading, hopefully my next blog won't be so long as I will not leave it this time! I apologise for disappearing and also if I have bored you to death...
xxx
I had my wonderful party weekend for my 21st birthday.. I came out of hospital on the Friday (16th March) the night before my birthday, where I spent the evening round my cousins house with my Dad's family. We had a poker night, but also cake, champagne, presents, KFC and other goodies :) It was a great night and they'd put so much effort in I was really pleased as I thought it was just going to be a poker night, so I was really shocked and happy when all the surprises kept coming. It was a great night and I came 3rd in poker, I had got up that morning at 8am (woken by the nurses) then we travelled home from Papworth and I didn't have any sleep, I was in pain so I did struggle through the night and by midnight I was very tired and probably a bit grumpy lol but we all went home and I had a nice sleep :)
The bad thing was, I'd had an allergic reaction to something in the food I ate whilst in Papworth, I normally take antihistamine tablets with foods I'm unsure of, obviously at home I know what I'm eating and what I put into my food, but when I eat off the menu or food from the canteen, I can never be sure so I was having an IV form of antihistamine whilst in hospital, but what I didn't realise was they stopped it on the Wednesday for some reason it was crossed off, I then ate something with whatever it is I'm allergic to (I'm not 100% sure but I think it's a type of spice - coriander/cumin etc) and my lips swelled up like a fish, my entire mouth was sore, with painful spots and bumps inside my cheek and my lips, my tongue was swollen, tonsils and glands were up and I had no taste in my mouth - I also had thrush in my throat from the strong IV's I was on (so I now have to take Fluconazole when I have IV's to stop the thrush) so unfortunately I wasn't really able to eat or drink for a few days until it settled down, which meant no alcohol and also very little food at my party :(
So onto my party we go... I had a fantastic night, there were about 70 people there, it was at my Mum's house as I didn't have enough money to pay for a hall and my house is big, but not big enough to hold 70 people! We had music playing all night and the living room was the 'chatting' area, where people went to chill out on the sofa where it wasn't so loud, I did spend quite a lot of time in the living room because I was really ill so I had to stay sitting down most of the night :( but I had a great time still! I couldn't eat any of the lovely chilli Mum had made because of my mouth being so sore, it just burnt, also I had 1 shot of corky's and I almost cried in pain, so stuck to water and tea all night lol...! It was nice to be sober though because I could be a good host and see everyone enjoying themselves, which brought a smile to my face! :) I had bought 1 bottle of Sambuca, 2 bottles of corkys and 2 bottles of Apple sours so I went round with 'shot trays' it was great being the host, I was handing the shots out and I think everyone probably regretted having so many the next day haha!
I'd bought a lovely blue dress from Lipsy but before I went into hospital it was a bit loose so I was dreading trying it on for my party because I wanted to look nice and it just didn't, but I ate so much food in hospital (4 meals a day + lots of snacks) that by the time I came out I had gained about 4lbs, I put the dress on and it fit really well! No longer loose and baggy, but tight and pretty, I was so pleased and everyone said it looked nice so I was really happy with it in the end!
I got a lot of presents and money from everyone, I also got a lot of '21' things, mugs, bears, glasses, keyrings etc.
The worst bit about the night was I ended the night being very sick, I was the sober one being sick, all the drunk people weren't lol, oh the irony!! It was because I was coughing so much it made me very sick. So I went home, about 3am-ish, I was having pains and 'bubbling' in my lung around the area where my lung had collapsed previously, so I was really worried it had collapsed again.
I held on as long as I could, but in the end I called Papworth on the Thursday morning (the 22nd March) my clinic appointment was the Friday anyway, but I was telling them about the pains and that I was worried my lung had collapsed again, I was finding it very difficult to breathe, I couldn't take my oxygen off without practically gasping for air, the pains were so unbearable even my morphine (oramorph) wasn't touching the pain, so I'd decided to go into hospital on the Friday whether my lung was collapsed or not, I felt I needed a rest. Also my transplant assessment was on the 2nd & 3rd April so I wanted to be as well for that as possible, during my stay before they said I was borderline kidney failure because my body just decided to stop playing fair, so I was worried about being refused transplant if my kidneys were messed up, but thankfully after lots of tablets, fluid IV's and various other things, they returned to normal and were no longer an issue, but I wanted them to be closely monitored while I was in hospital because I didn't want anything ruining my chances of getting on the list.
I was in hospital for 12 days and Josh stayed with me the whole time, they got him a little bed and although it was horrible for him and me, we got through it. My lung had collapsed again but thankfully it wasn't bad enough to need a chest drain, although after the 12 days it was still collapsed, it hadn't got any worse but at the same time it hadn't got any better, but the plan was after I'd got back from Harefield on the Tuesday I was going to go home the next morning.
Monday the 2nd came and we were transported to Harefield hospital in London via an ambulance from Papworth, we left really early as I had to be there for 9am. When we arrived I was shown to my room which was nice and big, I had to do 24 hour urine collection but as I'd come from another hospital I had to be 'barriered' which basically meant I wasn't allowed to leave my room in case I had MRSA, so except for tests I was confined to my 4 walls, this meant I had to use a commode which was awful because I just find them so difficult to use! But I wee'd in a jug for 24 hours, which was an experience lol, until I'd finished the 24 hour collection then I could wee normally but still in the commode grrr lol!!
I had about 30 bottles of blood taken, my PICC line had decided it was the perfect time to stop bleeding, THANKS! So I had to have the blood taken from my veins, but thankfully I have one good vein which always works, if you hit it right, it bleeds and they got it in first time woop! I then had to have another blood test the following morning after fasting, I wasn't allowed to eat from midnight, also because I was having an ultrasound so I had to starve :(:(
I also had an ECG on the first day (heart tests) a chest x-ray and lots of chats with various people. The second day was a lot more busy, I had to have a CT Scan of my chest and they also did a DEXA scan, which is a scan of your bone density at the same time, I then had an ultrasound of my entire abdomen, liver, kidneys, spleen, womb, etc. Then I went back to my room and had food, yay! I was so hungry after not being able to eat all night, I decided to have a pot noodle then this lady came in and was talking for so long it went cold, but I was too hungry so I ate it, lol. They wanted to check my lung collapse hadn't got worse, I wasn't allowed to do lung function tests because the force of blowing out could cause a serious collapse as it was already half way there! But they decided I could still do the 6 minute walk test, which basically means you have to walk up and down a corridor for 6 minutes, walk as much as you can, but there are chairs if you need to sit down, I stopped quite a few times to cough and get my breath back but I tried to walk as much as I could, the idea is to say how breathless you are and how weak your muscles feel, because it's very important to keep strength in your muscles for post-transplant recovery, the weaker you are, the longer it takes to recover. I got to 9/10 on the breathless scale but only 3.5/10 for muscle weakness, I feel I haven't lost too much of my strength which is good, the physio gave me exercises to do at home, just simple reps lifting a can of coke or something 15-20 times once or twice a day, and a stretching exercise for my legs which works the muscles along the back of your leg and should keep them nice and strong without doing anything that would exhaust me or make me lose weight. I had my oxygen on during the whole test as I always need it on when exercising, my oxygen levels dropped quite low, down into the 70's towards the end of the test but thankfully when I stopped to get my breath back, they went back up again.
The worst test I had was easily the arterial blood gas, this is a blood test on the inside of your wrist, they have to find an artery and take blood from it, and unfortunately, arteries aren't on the surface so this means putting the needle in quite far then almost 'digging around' to find it, it hurt a lot I'm not going to lie, they had a go on my right wrist but he couldn't get any blood at all, so then he had another go on my left and did manage to get blood, then I didn't hear anything about it until one of the nurses told me that evening that unfortunately they didn't get enough blood so I had to have another go the next day :( but they were going to get an anesthetist to do it and he would use some local to hopefully numb the area. So I spent the entire second day absolutely dreading it, petrified about having it done again and the guy didn't come until about 2pm so I had ages to worry.. Thankfully the local worked and it was just slightly uncomfortable compared the it being extremely painful without the local, so it definitely helped and he knew exactly what he was doing, hit the artery straight away and got plenty of blood out, so that was all fine in the end!
Then I had to chat with the transplant co-ordinator and the pallaitive care team before I could go home. The co-ordinator, Brian, was lovely, I'd met him before anyway but he is very nice and puts you at ease, he had to go through this booklet with me which explains everything about transplant, the good and the bad, from now until the end - it talks about all the immuno-suppressants, what tablets you'll be on, what side-effects you'll get (most of them are not nice at all) the risks, rejection etc. He also explained all the statistics, survival rates etc. it wasn't fun to hear, but in the last 3 years they haven't had anyone die on the operating table which is my worst fear, so at least that was reassuring. They have to give you extreme worst case scenario but it wasn't nothing I didn't already know. The good thing is I have 0% antibodies, this means I can receive a transplant from all of the population (who are the right match for me, blood group O, my height etc) but if you have 50% antiobodies or something, this means 50% of the 'perfect matches' wouldn't actually be able to give you an organ as it would instantly reject, so having 0% is good, but it also means I could get a few more falses alarms, as when someone is called for transplant and they have say 30% antibodies, they call in a 'backup' in case their antibodies match, then I'd get the lungs, but if they are a perfect match for the other person and the antibodies aren't the same, they would get the lungs, so I'm absolutely thrilled to have 0% but at the same time, could get a few more false alarms, but in a way I don't mind having a false alarm, I'd quite like to go through it all and see exactly how it all goes, so the next time I'm ready, probably weird but there we go...
Anyway, I went home from Papworth on the Wednesday and I was going to be called by Harefield on the Thursday to say whether I was going to be put on the list or not.. The phone call came and they started by saying 'we want to offer you a place on the transplant list' so obviously I was super happy, but then they said 'but...' and my heart sank, basically between my first assessment in November and this one in April my average blood sugar had increased from 9% to 12% which is not good, I know it's my fault, I was so focussed on trying to gain weight, I forgot how important my insulin was with everything I ate, so I let it slip a bit, but anyway they want me to see their diabetic team in clinic to have a plan and also as my kidney function was a little low (as expected) they need to start me on a tablet to protect them, the appointment for this clinic is the 23rd May so just under a month. They will hopefully be putting me on the list after this, I hope. I'm not 100% sure, but I will find out when I go to the clinic.
That's about everything, my lung is still collapsed so I'm having to be careful what I do, I was in Papworth again from the 11th to the 18th, just for another rest and more IV's, I'm now on 24 hour oxygen which is annoying but it does help with my breathing so as much as I hate it and feel I'm getting a lot worse, if it helps then I guess I have to put up with it.
We went away for my Mum's (early) 40th birthday this weekend, it was great fun, we went and stayed in a very posh mansion house, me and Josh, mum and stepdad, my nanny and grandad, auntie uncle, cousins, sister + her fiance etc. we played pool tournaments, quizzes, murder mystery, other games and just had a great time, we had KFC on the Friday, a BBQ on the Saturday, then chilli/curry with jacket potatoes on the Sunday, the house was huge so it was a struggle walking around and thankfully my oxygen tubing from my concentrator is very long so I was able to walk from the living room to the kitchen with it attached and my bedroom was right at the top of the stairs, so we just sent it straight up over the bannister and into my room. I was on IV's, so I still had to do them while there and I did struggle a lot with pain and breathlessness, but it's not everyday you get to do something like that so I made sure I made the absolute most of it and spending all that precious time with my family was amazing :)
I'll leave you with a photo of all of us doing the Murder Mystery at the weekend, I was supposed to be a 'sexy secretary' lol.
Thank you for reading, hopefully my next blog won't be so long as I will not leave it this time! I apologise for disappearing and also if I have bored you to death...
xxx
Thursday, 15 March 2012
Another Lung Collapse & My 21st Birthday!!
As you may or may not know, I had another lung collapse, here is the story of the past week!
I went to my local A&E as requested by Papworth last Thursday, after getting some pain in my lung, very similar to the pain I'd experienced the week before when my lung collapsed, although not quite as severe, I also was extremely breathless and I was using my oxygen 24 hours a day again.
They x-rayed me and said there was no collapse, but I wasn't convinced. I wasn't going to argue with the doctor, but I went home anyway knowing I was attending clinic at Papworth the next day. I had phoned my CF team in the day telling them what happened and they wanted me to go up there to be x-rayed and potentially stay in, so they were goingt to get me a bed ready on another ward (to then move onto CF ward the next day) but I called them back and said I'd rather not make a 3-hour round trip just in case my lung wasn't collapsed and it be a complete waste of time, so they suggested I went to A&E, then contact them afterwards.
So after my trip to A&E, I called the CF ward and told them it wasn't collapsed but I wasn't convinced so I decided I'd take the bed on CF ward the next day regardless, hoping I would be able to stay in for a good rest over the weekend, then leave on the Monday ready for my busy week planning my 21st birthday (17th March.)
I was put back into room 3 which was the large room I'd been in before when my lung had collapsed the last week. Obviously Josh was going to be staying with me again as my mental health was not in the best shape and staying in hospital for the weekend would have really messed with my head. I also was seeing the dental team at Addenbrookes on the Tuesday and I know if I'd have been alone, my fear and anxiety of the dentist would have been bad enough!!
Anyway, I had an x-ray done at Papworth almost immediately and was greeted with the fantastic news that my lung was slightly collapsed, only just over 1cm so it wasn't enough to need a chest drain but we would keep an eye on it, keep on with the IV's and hope it improved. Well that night, it collapsed. I just remember having the same stabbing, severe, sharp pains around my left shoulder, I felt extremely breathless and just cried and cried, I was pretty much 'ow' screaming, lol. The nurse heard and came running in, I was then sent off for an emergency x-ray and what do you know, it had collapsed further. So from being told on Thursday night by my A&E I had no collapse, to the Friday night/early hours of Saturday, having another proper collapse wasn't how I wanted the weekend to go, lol - I was then given lots of pain-relief and was able to get some sleep ready to have another chest drain put in the next morning.
As it was a Saturday, the on-call team were going to fit the drain which made me more nervous as the time before, it was put in by the same guy who does all the Port-a-caths and PICC lines at Papworth, so it was a familiar face and someone I felt I could trust. I'm a very nervous person so I was given 1.5mg of Lorazepam which was supposed to take the edge off my anxiety and sedate me a little, as my chest drain was being put in under a CT scan I had to be awake, as you have to hold your breath, then breathe out etc. so I wasn't able to be fully sedated. One of the CF consultants came along with me so she could give permission for me to have extra Morphine/Lorazepam during the procedure. I had another 0.5mg just before the procedure and I did feel a bit sleepy and I wanted to be in la-la land but my silly anxiety wouldn't let me! I did have a lot of Morphine (Oramorph) before, during and after the procedure but nothing could completely take the pain away.
I will say, the worst bit is having the local anaesthetic put in, it stings and they seem to push the second lot in quite deeply, the first numbs the skin and surrounding area, the second injection I think, goes into the lung, but I can't be sure as I would never watch, lol! After that though, all you feel is pressure and the odd weird sensation, once the drain was in my lung started inflating immediately so it hurt a lot, well it was more uncomfortable than actual pain but it meant it was in the right place and doing it's job properly!
By the Sunday, my lung was pretty much back to normal and my drain 'pot' hadn't done anything for a while, to begin with the water was bubbling as the air that was trapped in the collapsed area was coming out of the lung, along with any other gunk/blood lingering around in the area. The area that collapsed was almost exactly the same area as the week before, so that made us think perhaps we didn't leave the drain in long enough and I had itchy feet and really, really wanted to go home, so although all the signs pointed to the fact the lung was back to normal, 3 days just wasn't enough. So the plan this time was to put the drain in on the Saturday and leave it until Thursday (today) where it was clamped off, they did this to check the lung still stayed inflated throughout the day, I then had another x-ray this evening and nothing had changed so the clamp was removed a couple of hours ago, so I'm ready to have it out in the morning :) ...It's been in 6 days this time, double the amount the last drain was, so I really hope it stays inflated this time.
It's my 21st birthday on Saturday so the plan is, drain out very early in the morning and shoot off home as soon as possible!! I was going to be going home on IV's, but I've decided to have a few days off as I have been on them just over 1 month now, I'm having my tooth out at Addenbrookes on Tuesday then I will probably come back to clinic on Wednesday providing no further collapses happen and I don't overdo it at my party!! I may then restart IV's but I'm hoping to get a nice break from them for now if my lungs will behave!
During my stay my kidney function figures went a bit mental, one of the IV's I was on had caused my kidneys to stop working properly. I had to have magnesium tablets for 3 days and I was very dehydrated. But after stopping this particular IV completely, thankfully within 2 days my kidneys had returned back to the normal range!
So it's now Thursday night and I'm all packed ready to go home as soon as the drain is out! I can't wait to be reunited (again) with my puppy babies tomorrow, then begin my birthday celebrations. I'm having a poker night with my Dad's family Friday night, then a big house party at my Mum's on Saturday.
My cousin Ashton dyed my hair last week to match some extensions that I bought a while ago, so I'm having them put in on Saturday afternoon, my hair colour is lovely and she did a fabulous job :) my hair is the lightest it's ever been, but it's exactly what I wanted! I also have a lovely lipsy dress and I'm sooooo excited for the whole thing, I will hopefully have some photos to upload for you guys from the party but I intend to be off my face, so I will depend on others to take photos for me;)!!
There were plans in place so I could attend my party even if my lung hadn't gone back to normal, there were talks of hidden chest drains which would hide under my clothing, then return straight back to hospital but thankfully it's all worked out okay :)
I'll leave you with a photo of me in hospital, I woke up with curly hair which is odd for me so my suspicion is that Josh curled my hair during the night, hmmmmm. Either way, it's the last photo of me being 20 on this blog, hooray :)
Oh and, my weight is still increasing, I took a bit of a knock the other day when I was sick 3 days running, but now I'm a little healthier again, the weight is going up again (today I was 43.1kgs)
Thank you for reading.. Hopefully my next blog will not have any mention of anymore lung collapses but instead be a party-filled-21st-birthday-fun-happy-blog, yay :) - can you tell I'm slightly excited???
xxx
I went to my local A&E as requested by Papworth last Thursday, after getting some pain in my lung, very similar to the pain I'd experienced the week before when my lung collapsed, although not quite as severe, I also was extremely breathless and I was using my oxygen 24 hours a day again.
They x-rayed me and said there was no collapse, but I wasn't convinced. I wasn't going to argue with the doctor, but I went home anyway knowing I was attending clinic at Papworth the next day. I had phoned my CF team in the day telling them what happened and they wanted me to go up there to be x-rayed and potentially stay in, so they were goingt to get me a bed ready on another ward (to then move onto CF ward the next day) but I called them back and said I'd rather not make a 3-hour round trip just in case my lung wasn't collapsed and it be a complete waste of time, so they suggested I went to A&E, then contact them afterwards.
So after my trip to A&E, I called the CF ward and told them it wasn't collapsed but I wasn't convinced so I decided I'd take the bed on CF ward the next day regardless, hoping I would be able to stay in for a good rest over the weekend, then leave on the Monday ready for my busy week planning my 21st birthday (17th March.)
I was put back into room 3 which was the large room I'd been in before when my lung had collapsed the last week. Obviously Josh was going to be staying with me again as my mental health was not in the best shape and staying in hospital for the weekend would have really messed with my head. I also was seeing the dental team at Addenbrookes on the Tuesday and I know if I'd have been alone, my fear and anxiety of the dentist would have been bad enough!!
Anyway, I had an x-ray done at Papworth almost immediately and was greeted with the fantastic news that my lung was slightly collapsed, only just over 1cm so it wasn't enough to need a chest drain but we would keep an eye on it, keep on with the IV's and hope it improved. Well that night, it collapsed. I just remember having the same stabbing, severe, sharp pains around my left shoulder, I felt extremely breathless and just cried and cried, I was pretty much 'ow' screaming, lol. The nurse heard and came running in, I was then sent off for an emergency x-ray and what do you know, it had collapsed further. So from being told on Thursday night by my A&E I had no collapse, to the Friday night/early hours of Saturday, having another proper collapse wasn't how I wanted the weekend to go, lol - I was then given lots of pain-relief and was able to get some sleep ready to have another chest drain put in the next morning.
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| Me with the CT scanner, potentially crying saying nooooo I don't want another drain!!! Lol |
As it was a Saturday, the on-call team were going to fit the drain which made me more nervous as the time before, it was put in by the same guy who does all the Port-a-caths and PICC lines at Papworth, so it was a familiar face and someone I felt I could trust. I'm a very nervous person so I was given 1.5mg of Lorazepam which was supposed to take the edge off my anxiety and sedate me a little, as my chest drain was being put in under a CT scan I had to be awake, as you have to hold your breath, then breathe out etc. so I wasn't able to be fully sedated. One of the CF consultants came along with me so she could give permission for me to have extra Morphine/Lorazepam during the procedure. I had another 0.5mg just before the procedure and I did feel a bit sleepy and I wanted to be in la-la land but my silly anxiety wouldn't let me! I did have a lot of Morphine (Oramorph) before, during and after the procedure but nothing could completely take the pain away.
I will say, the worst bit is having the local anaesthetic put in, it stings and they seem to push the second lot in quite deeply, the first numbs the skin and surrounding area, the second injection I think, goes into the lung, but I can't be sure as I would never watch, lol! After that though, all you feel is pressure and the odd weird sensation, once the drain was in my lung started inflating immediately so it hurt a lot, well it was more uncomfortable than actual pain but it meant it was in the right place and doing it's job properly!
By the Sunday, my lung was pretty much back to normal and my drain 'pot' hadn't done anything for a while, to begin with the water was bubbling as the air that was trapped in the collapsed area was coming out of the lung, along with any other gunk/blood lingering around in the area. The area that collapsed was almost exactly the same area as the week before, so that made us think perhaps we didn't leave the drain in long enough and I had itchy feet and really, really wanted to go home, so although all the signs pointed to the fact the lung was back to normal, 3 days just wasn't enough. So the plan this time was to put the drain in on the Saturday and leave it until Thursday (today) where it was clamped off, they did this to check the lung still stayed inflated throughout the day, I then had another x-ray this evening and nothing had changed so the clamp was removed a couple of hours ago, so I'm ready to have it out in the morning :) ...It's been in 6 days this time, double the amount the last drain was, so I really hope it stays inflated this time.
It's my 21st birthday on Saturday so the plan is, drain out very early in the morning and shoot off home as soon as possible!! I was going to be going home on IV's, but I've decided to have a few days off as I have been on them just over 1 month now, I'm having my tooth out at Addenbrookes on Tuesday then I will probably come back to clinic on Wednesday providing no further collapses happen and I don't overdo it at my party!! I may then restart IV's but I'm hoping to get a nice break from them for now if my lungs will behave!
During my stay my kidney function figures went a bit mental, one of the IV's I was on had caused my kidneys to stop working properly. I had to have magnesium tablets for 3 days and I was very dehydrated. But after stopping this particular IV completely, thankfully within 2 days my kidneys had returned back to the normal range!
So it's now Thursday night and I'm all packed ready to go home as soon as the drain is out! I can't wait to be reunited (again) with my puppy babies tomorrow, then begin my birthday celebrations. I'm having a poker night with my Dad's family Friday night, then a big house party at my Mum's on Saturday.
My cousin Ashton dyed my hair last week to match some extensions that I bought a while ago, so I'm having them put in on Saturday afternoon, my hair colour is lovely and she did a fabulous job :) my hair is the lightest it's ever been, but it's exactly what I wanted! I also have a lovely lipsy dress and I'm sooooo excited for the whole thing, I will hopefully have some photos to upload for you guys from the party but I intend to be off my face, so I will depend on others to take photos for me;)!!
There were plans in place so I could attend my party even if my lung hadn't gone back to normal, there were talks of hidden chest drains which would hide under my clothing, then return straight back to hospital but thankfully it's all worked out okay :)
I'll leave you with a photo of me in hospital, I woke up with curly hair which is odd for me so my suspicion is that Josh curled my hair during the night, hmmmmm. Either way, it's the last photo of me being 20 on this blog, hooray :)
Oh and, my weight is still increasing, I took a bit of a knock the other day when I was sick 3 days running, but now I'm a little healthier again, the weight is going up again (today I was 43.1kgs)
Thank you for reading.. Hopefully my next blog will not have any mention of anymore lung collapses but instead be a party-filled-21st-birthday-fun-happy-blog, yay :) - can you tell I'm slightly excited???
xxx
Sunday, 4 March 2012
Bad Lung Collapse and A Major Weight Gain!!!
I've been trying to write this blog since Wednesday night but really haven't known where to begin, I also haven't exactly felt up to writing a blog in a complete drugged up, numb, morphine-induced state haha! So I thought I'd wait until I could give all the correct information, so here we go.
I came to clinic Wednesday afternoon (3.30pm) for IV blood test levels, then I was supposed to just have a quick chat with my doctor about whether I needed my pain killer doses changed etc, we'd spoken on the phone Tuesday and had already put the prescription in for my next week of IV's and all my other meds, thinking we could make the appointment as quick as possible which couldn't be further than the truth!! I did ask for my anti-depressant dose to be increased and that was about all, I then hadn't quite decided in my head whether I was going to ask for an x-ray or not because as I'm about to explain, I'd had a weird thing happen on Saturday night (which at the time, I'd never thought of putting the two together, but looking back I can't believe I didn't think of it!!) so I thought perhaps I'd mention it and as an x-ray is pretty standard when it comes to CF I thought it wouldn't hurt because they can tell a lot from an x-ray.
I then went to have my blood levels done, then whilst having it done my CF consultant came in and said okay we need to talk about your x-ray *cue panic alarms in brain* she said I'd had a pneumothorax which is the medical term for a collapsed lung. This means somehow the lung had come away from the chest wall and air/fluid had got behind it. We then tried to figure out when the lung had collapsed because to me I'd been feeling as normal as possible, I did feel more chesty, definitely more short of breath, I had my oxygen on 2-3L non-stop for 3-4 days, when normally I only have it on during the night. So I then put two and two together and remembered exactly when my lung collapsed...
It was Saturday night (the night after the evil dentist appointment) I suddenly started getting this agonising pain in my left shoulder blade area, I remember rubbing it, moving my arm around and nothing helped, I thought it was my PICC line infected as that was where it is, the pain then moved lower down my chest, I took some of my morphine medication and fell asleep, that was the last I thought of it! I knew Josh had an important golf match on Sunday morning which I didn't want him to miss, or to have a lack of sleep in preparation - so I decided not to bother going to A&E, even though I do recall saying to him 'I think a normal person would've called 999 for that but we're used to this sort of thing lol'... I know I didn't want to sacrifice his match, golf is his passion and I don't want my CF to take away his life and hobbies and besides the pain had settled so I thought I'd be okay and it was just an odd blip - So basically, Monday night at poker I had a collapsed lung, lol, Sunday morning when Josh had gone to golf, I had a collapsed lung - such a serious thing, but to someone who is used to being in constant severe pain and discomfort, I didn't think anything of it - when as a matter of fact, an ambulance probably should have been called and I would've known all this a lot sooner!!
This meant I had to have a chest drain put into my lung to remove any air/fluid so the lung could essentially re-inflate itself and stick back up where it should be. I was clearly a nervous wreck because I may, or may not, have mentioned before but I suffer very badly with anxiety so when the 'unknown' is about to happen, I go into a massive panic. They did give me some Lorazepam which did it's job I guess, I did feel a bit drowsy and at ease but obviously unless they knocked me out, I was bound to be a quivering wreck!! The procedure then went as follows..
They carried out a CT scan of my lungs, which gave them a 3d perspective view of my lung as opposed to a 2d x-ray image, so they were able to locate the exact position of the collapse. They then mentally prepared me for what was about to happen, probably not a good thing, I prefer them to just get on with it and tell me when it's over haha!! Anyway, they cleaned the area then I had 3 injection of local anaesthetic, two into my lung area and one into the skin, it stung like mad, I have local with PICClol!)
So in conclusion to all this - I'd never had a lung collapse before, never in a million years did I expect my doctor to tell me I'd had one and I hope to not have another one again! But, the main thing is I've done it, I've come out alive, just with another little scar but that is nothing to me. The collapse was a collapse but it wasn't one where they feared I may die from it so at present I'm still hanging in there okay, if it keeps happening there are future complications regarding transplant but for now, this shouldn't cause any problems in that aspect!
The most important thing I need to mention was that my consultant understood I'm not in a very good place emotionally at the moment so she advised Josh to stay with me at least for the first night, then perhaps switch with family members, so I always had someone with me. But Josh stayed by my side the entire time, he carried my little fluid tub around for me, he made me endless cups of teas, went to the canteen to pick me up better meals, went on little food shopping trips for me, went and asked for pain meds when they were late, he helped me so much and I think if I had done that hospital stay alone, things would've been very different - he truly is amazing and I'm so so so grateful he stayed with me.
I also need to thank my Nanny, Mum and Father in Law - My nanny slept round my house Weds and Thurs night keeping the little pups company so they weren't on their own, she has health problems of her own but she wanted to make sure we came home to a nice house so I'm really thankful she did that.. Also my Mum looked after the pups in the day, making sure they were fed, she cleaned our carpets and tidied the house up and then Tony (Josh's Dad) stayed Friday night with the pups and didn't leave until Saturday lunch time, my Nanny had turned up earlier in the day not expecting anyone to be there and they ended up having a 2 hour chat with him haha! It's great how families really do pull together in these sort of circumstances.
Also the night I was rushed into hospital, my Mum brought up all the things I might need, like pyjamas, clothes, phone chargers, medication etc. My Step dad also came as did my Sister Kim, when they first arrived I was wide awake but I had been lightly sedated that day and had been given a lot of pain relief which all seemed to hit me at once so I don't remember too much later on that evening, I think I kept drifting in and out of sleep!
My Dad also came up to visit and I had a lot of texts/comments/messages of support and a few lovely cards and presents which I'm very grateful for, I said to Josh whilst in hospital, it's times like this, and seriously life-threatening situations like this one was - that you realise who is important, I had texts from people I barely know but they took the time and effort to think of me, which is more than a lot of people did.
Anyway, it's now Saturday night and I'm back home in my lovely little house with my pups :) it's earlier than most people would leave hospital after a pneumothorax but I do struggle a lot and felt food wise etc, I would have been better off at home.
I'm still a bit sore but I'm bound to be after having the drain out today, it didn't hurt, it was similar to having a PICC/long line/venflon removed, the worst bit (as always) was taking all the plasters, dressings off and getting the stitch out!! So I do still have all my regular pain killers anyway, so thank god for that!
I'm now still going to be on home IV's still until Friday when I will then be back for clinic and I'm sure, yet another x-ray, but in the mean time I'm going to have my dental work done at Addenbrookes hospital on Tuesday, my hair coloured Wednesday, Cut on Thursday, Clinic on Friday and then I will relaxxxxx :) Obviously I'm not a complete moron and although stubborn at times, I know when too much is just too much and wouldn't hesitate to cancel anything, especially since my 21st birthday is on the 17th March and I'm having a house party with around 70-80 guests (eek) so I need to be well and healthy for that, if you want to send me cards/presents/love just ask Josh for our address and I'll look forward to receiving them ;) I'm joking, of course I don't expect anything!!
I'm still a bit sore but I'm bound to be after having the drain out today, it didn't hurt, it was similar to having a PICC/long line/venflon removed, the worst bit (as always) was taking all the plasters, dressings off and getting the stitch out!! So I do still have all my regular pain killers anyway, so thank god for that!
I'm now still going to be on home IV's still until Friday when I will then be back for clinic and I'm sure, yet another x-ray, but in the mean time I'm going to have my dental work done at Addenbrookes hospital on Tuesday, my hair coloured Wednesday, Cut on Thursday, Clinic on Friday and then I will relaxxxxx :) Obviously I'm not a complete moron and although stubborn at times, I know when too much is just too much and wouldn't hesitate to cancel anything, especially since my 21st birthday is on the 17th March and I'm having a house party with around 70-80 guests (eek) so I need to be well and healthy for that, if you want to send me cards/presents/love just ask Josh for our address and I'll look forward to receiving them ;) I'm joking, of course I don't expect anything!!
Here are a few photos, they aren't in anyway 'gory' like post-transplant photos, I guess the worst one is this horrible photo of my face - but alas, you have been warned ;)
But if you don't want to look at all the photo's there is one photo right at the bottom of the page that you MUST look at, if you have any interest in me, my weight gain, my transplant situation etc, then you will equally love it... So please have a look :)
But if you don't want to look at all the photo's there is one photo right at the bottom of the page that you MUST look at, if you have any interest in me, my weight gain, my transplant situation etc, then you will equally love it... So please have a look :)
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| The x-ray on the left was taken on Wednesday, the collapse is not really visible but the scarring and damage is. The right x-ray was taken in 2008, it is less clear, but it has a lot less scarring. |
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| This was my drain, straight after it had been put in, |
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| This was my fluid pot attached to my drain, it is not all blood - they filled it with 100mls of water so they could watch for bubbling (indicating air was still coming out) it did turn pink because there was blood in my lungs, but there was also blood from where they put the drain in. |
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| This is just me looking rough in my hospital bed! |
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| I still needed 24/7 oxygen at this point. |
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| Close up :) - make up was definitely needed after seeing the previous photos. |
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| My absolute hero <3 |
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| I had just been told the drain was coming out and I could go home that afternoon, yaaaaaaaaaay!! |
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| This is where the drain went in, it was just under my left breast. There is a stitch, but no dressing and was about to be pulled out (which didn't hurt at all!) |
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| Me, eating as usual, looking super fat but happy that I was drain-free! |
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| Me looking a lot more well and healthy :) |
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| The amazing, exciting reunion with my baby girls <3 |
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| I love them!!!! :D |
YES YOU DID READ THAT RIGHT AND YES THOSE ARE MY FEET ON MY SCALES!!!! 44kgs - I'm probably going to cause another lung collapse due to excitement!!! That makes my BMI 17.9, Harefield were already happy with it when it was 16.4 so if they were then, they will be over the moon now :)
An ideal BMI is 18.5 and to get to that I need to be 45.5kgs.
But the highest weight I've ever been in my life is 44.3kgs, so if I can get to 44.4kgs I don't care what happens, that is my ultimate goal - I'm already the heaviest weight I've ever been since being with Josh, so he will most probably leave me now for a newer, skinnier version, but I guess if you want new lungs, you have to deal with the new 'fat rolls' and the consequences... ;)
Hehe, thank you for reading and for all the support!
Wednesday, 22 February 2012
Weight Gain & New Tablets.
My weight at clinic today was the highest weight I've been in the last 3-4 years. It was 42.5kgs (6 stone 10) to most people this is still tiny lol, but I was 31kgs before I started gaining weight which worked out at a very rubbish, 5 stone!
My BMI is now 17.2, it's still not 18.5 (healthy) but if you compare that to what it was in January 2010 which was 13.3, it's a huge increase!
In total I have now gained 1.9 Stone.
I'm going to be be totally honest, I never imagined I could do it, I was positive and hoped I could, but I along with my CF team thought it was quite a difficult target to reach in a potentially short space of time..
They told me I needed to gain 2 stone and get to at least 43/44kgs, back then my weight was dropping day by day and I didn't think I'd ever get it anywhere near what it was today. It all started by sorting out my diabetes, my blood sugars were not very well controlled and that wasn't helping my weight at all, so I worked really hard on getting my average blood sugar down, which I managed - from 15% to 9% it still needs work and I know it isn't perfect, but from being that high, it's now pretty good for me. The transplant team like to see improvements and that is a huge one.
The rest of my weight gain has been down to a tablet called 'Megace' my friends with CF, particularly people I spoke to on the CF forum had advised me to ask about it because they said it was literally a wonder drug and I believed them after they gave me all their stories, so I really wanted to try for myself. At first, Papworth were very reluctant to give it to me for a number of reasons but whatever the potential side-effects could've been, what it has done to my weight is worth going through anything (I haven't actually had any side-effects other than irregular periods, which isn't too much of a problem anyway)
To anyone who is struggling with their appetite, even if you feel you could use a little boost with your weight, ask for Megace and fight, fight fight. I had to put up the biggest fight to get it prescribed and my dieticians still refuse to believe my weight gain is due to the tablet, but I don't care because I know and now the numbers speak for themselves.
It was the best thing I've ever fought for, if I hadn't done it I don't think my weight would be anywhere near where it is now and I'd be nowhere near the stage I am in the transplant process.
Not only has it helped that, but it has also made me feel so much more confident in my body, I was literally a walking skeleton, when I look back at photos I look horrible and I'm embarrassed that I ever felt 'okay' looking that way. Now I have boobs again, I have a bum, my skinny jeans look tight on my legs and I enjoy buying new clothes now because I'm so much happier with my body. I've always been thin, so I know I'm not going to look 'fat' and to most people I probably still look thin and a bit boney, but I am a lot happier in my skin now I have this extra weight on me!
I had clinic today and I have started on quite a few new tablets recently, 12 hour morphine twice a day, two tablets of diazepam at night for sleeping/relaxation then also taking 1 tablet during the day for my anxiety. I'm also on two other pain-killers, one for general pains and the other is an anti-inflammatory for my arthritic pain and today I've also been started on Oramorph which is a fast acting morphine to take during the day/night.. So hopefully I will be completely pain free soon lol!!
I am suffering with all these tablets though, particularly confusion and obviously sedation, I'm very tired a lot of the time but I must admit, it's amazing to finally be able to get a good night sleep! Also I can have a break from the pain, the only thing is I keep talking a load of rubbish apparently and I'm a little off-balance at times, it's quite entertaining to other but a bit weird for me, like on Saturday night my puppy Milly told me she wanted to go into town, I'm also talking in my sleep (something I'd never done before) it's madness haha! I'm officially insane :D
I'm still on 3 IV's for another 2 weeks then we are hoping I can have a break with the intention of staying off IV's for longer than 7 days, but we will see how that goes! Perhaps if all these tablets start working together, I won't need to depend on IV's so much and if I'm not in as much pain, maybe my chest will not be so difficult... I'll keep my fingers crossed.
There was another not so nice conversation again, the 'end' was brought up.. I was asked (if it came to it) whether I'd prefer to be at home or in hospital to die and after a lot of consideration, I decided I'd definitely want to be at home with Josh, my family, in a comfortable surrounding with my little baby pups by my side.
It's a tough thing to think and talk about, but at least I've now told them and they are now going to contact our local services/hospice to see what care they are able to offer should this need to happen.
But as I've stated possibly a million times now, I am not going anywhere :D!!!
Yes, I know I'm struggling more and yes, I'm now on the so called 'dying drugs' but, I still have as much, if not more, faith that I'm going to get on the list and get my transplant. I believe now my weight is better I have an even better chance of getting on the list in April and those lovely new puffers will be mine :)
Times are tough and I am going through a very rough patch at the moment, but it is Winter and I do suffer more during the colder weather. I think if permenant IV's are needed that will obviously help and hopefully these tablets will continue easing my pain and suffering and things will start to look up again.
I am feeling so unbelievably positive today because of my weight gain, it has made me really believe in myself and the fact that I can do anything I put my mind to!
Thank you for reading :)
xxx
My BMI is now 17.2, it's still not 18.5 (healthy) but if you compare that to what it was in January 2010 which was 13.3, it's a huge increase!
In total I have now gained 1.9 Stone.
I'm going to be be totally honest, I never imagined I could do it, I was positive and hoped I could, but I along with my CF team thought it was quite a difficult target to reach in a potentially short space of time..
They told me I needed to gain 2 stone and get to at least 43/44kgs, back then my weight was dropping day by day and I didn't think I'd ever get it anywhere near what it was today. It all started by sorting out my diabetes, my blood sugars were not very well controlled and that wasn't helping my weight at all, so I worked really hard on getting my average blood sugar down, which I managed - from 15% to 9% it still needs work and I know it isn't perfect, but from being that high, it's now pretty good for me. The transplant team like to see improvements and that is a huge one.
The rest of my weight gain has been down to a tablet called 'Megace' my friends with CF, particularly people I spoke to on the CF forum had advised me to ask about it because they said it was literally a wonder drug and I believed them after they gave me all their stories, so I really wanted to try for myself. At first, Papworth were very reluctant to give it to me for a number of reasons but whatever the potential side-effects could've been, what it has done to my weight is worth going through anything (I haven't actually had any side-effects other than irregular periods, which isn't too much of a problem anyway)
To anyone who is struggling with their appetite, even if you feel you could use a little boost with your weight, ask for Megace and fight, fight fight. I had to put up the biggest fight to get it prescribed and my dieticians still refuse to believe my weight gain is due to the tablet, but I don't care because I know and now the numbers speak for themselves.
It was the best thing I've ever fought for, if I hadn't done it I don't think my weight would be anywhere near where it is now and I'd be nowhere near the stage I am in the transplant process.
Not only has it helped that, but it has also made me feel so much more confident in my body, I was literally a walking skeleton, when I look back at photos I look horrible and I'm embarrassed that I ever felt 'okay' looking that way. Now I have boobs again, I have a bum, my skinny jeans look tight on my legs and I enjoy buying new clothes now because I'm so much happier with my body. I've always been thin, so I know I'm not going to look 'fat' and to most people I probably still look thin and a bit boney, but I am a lot happier in my skin now I have this extra weight on me!
I had clinic today and I have started on quite a few new tablets recently, 12 hour morphine twice a day, two tablets of diazepam at night for sleeping/relaxation then also taking 1 tablet during the day for my anxiety. I'm also on two other pain-killers, one for general pains and the other is an anti-inflammatory for my arthritic pain and today I've also been started on Oramorph which is a fast acting morphine to take during the day/night.. So hopefully I will be completely pain free soon lol!!
I am suffering with all these tablets though, particularly confusion and obviously sedation, I'm very tired a lot of the time but I must admit, it's amazing to finally be able to get a good night sleep! Also I can have a break from the pain, the only thing is I keep talking a load of rubbish apparently and I'm a little off-balance at times, it's quite entertaining to other but a bit weird for me, like on Saturday night my puppy Milly told me she wanted to go into town, I'm also talking in my sleep (something I'd never done before) it's madness haha! I'm officially insane :D
I'm still on 3 IV's for another 2 weeks then we are hoping I can have a break with the intention of staying off IV's for longer than 7 days, but we will see how that goes! Perhaps if all these tablets start working together, I won't need to depend on IV's so much and if I'm not in as much pain, maybe my chest will not be so difficult... I'll keep my fingers crossed.
There was another not so nice conversation again, the 'end' was brought up.. I was asked (if it came to it) whether I'd prefer to be at home or in hospital to die and after a lot of consideration, I decided I'd definitely want to be at home with Josh, my family, in a comfortable surrounding with my little baby pups by my side.
It's a tough thing to think and talk about, but at least I've now told them and they are now going to contact our local services/hospice to see what care they are able to offer should this need to happen.
But as I've stated possibly a million times now, I am not going anywhere :D!!!
Yes, I know I'm struggling more and yes, I'm now on the so called 'dying drugs' but, I still have as much, if not more, faith that I'm going to get on the list and get my transplant. I believe now my weight is better I have an even better chance of getting on the list in April and those lovely new puffers will be mine :)
Times are tough and I am going through a very rough patch at the moment, but it is Winter and I do suffer more during the colder weather. I think if permenant IV's are needed that will obviously help and hopefully these tablets will continue easing my pain and suffering and things will start to look up again.
I am feeling so unbelievably positive today because of my weight gain, it has made me really believe in myself and the fact that I can do anything I put my mind to!
Thank you for reading :)
xxx
Tuesday, 7 February 2012
I'm Still Here!
Firstly, I want to thank everyone who commented on my last blog post, it wasn't the easiest post to write but I've said from day one I want my blog to be very honest, telling you guys about the good and the bad times. I appreciate it couldn't have been easy to read either, but thank you for the overwhelming support. It has been absolutely fantastic, knowing so many people are really rooting for me and are 100% behind me gives me the motivation to carry on fighting this evil disease. I will, of course, continue to stay as positive as possible and keep my fingers crossed I get on the list as soon as possible :)!
Sorry I havent blogged lately, it's just that I haven't done anything 'blogworthy' I will have been on IV's tomorrow for 3 weeks, I will decide whether I will continue for one more week or not at clinic tomorrow, I'm not 100% sure what is best because although I'm not in as much pain (thanks to my new pain killers) I am still not right, my cough has become very chesty over the past 2-3 days and I'm now feeling a lot more tight chested, but sometimes IV's can do this so I am in two minds as to what will be best, I will probably ask their advice and go from there. I do think I could potentially have the early stages of a cold, but again time will tell.
We had some friends round on Friday night which was nice, people think I don't want company because I'm unwell most of the time, but it actually does the opposite. Imagine if you spent every single day feeling ill and you just sat around at home, in your pjs, doing nothing. Basically, it makes me feel like everyday is the same and all I have to think about is feeling rubbish, when people come to visit, I like to get myself dressed, maybe get a takeaway in and have a good old giggle, which takes my mind off being ill. So it's a good thing.. Of course there are times when I do just want to sit in and do nothing and going out is a completely different story, I find it very difficult to go out to visit people/attend things because in my own home, I have everything here I could possibly need if something went wrong, also it is more effort to go out. So if you would like to see Josh and I, it's best to come round our house and see us :) and as long as I'm not practically bedbound, then we love visitors, as do the pups!!
Speaking of the puppies, I've made them a facebook page. I kept adding photo's to my wall of them and my facebook was getting filled with beautiful puppy faces, so I thought if I made a page for them, if we have any photos/videos/updates on the pups we can do it there, all you have to do is click 'like' and you will be able to view the page and see all the photos etc. we upload.
Milly & Tink's Facebook Page
I'd love it if we managed to get lots of likes on there (and so would the pups haha!)
:)
Thanks for reading!
xxx
Sorry I havent blogged lately, it's just that I haven't done anything 'blogworthy' I will have been on IV's tomorrow for 3 weeks, I will decide whether I will continue for one more week or not at clinic tomorrow, I'm not 100% sure what is best because although I'm not in as much pain (thanks to my new pain killers) I am still not right, my cough has become very chesty over the past 2-3 days and I'm now feeling a lot more tight chested, but sometimes IV's can do this so I am in two minds as to what will be best, I will probably ask their advice and go from there. I do think I could potentially have the early stages of a cold, but again time will tell.
We had some friends round on Friday night which was nice, people think I don't want company because I'm unwell most of the time, but it actually does the opposite. Imagine if you spent every single day feeling ill and you just sat around at home, in your pjs, doing nothing. Basically, it makes me feel like everyday is the same and all I have to think about is feeling rubbish, when people come to visit, I like to get myself dressed, maybe get a takeaway in and have a good old giggle, which takes my mind off being ill. So it's a good thing.. Of course there are times when I do just want to sit in and do nothing and going out is a completely different story, I find it very difficult to go out to visit people/attend things because in my own home, I have everything here I could possibly need if something went wrong, also it is more effort to go out. So if you would like to see Josh and I, it's best to come round our house and see us :) and as long as I'm not practically bedbound, then we love visitors, as do the pups!!
Speaking of the puppies, I've made them a facebook page. I kept adding photo's to my wall of them and my facebook was getting filled with beautiful puppy faces, so I thought if I made a page for them, if we have any photos/videos/updates on the pups we can do it there, all you have to do is click 'like' and you will be able to view the page and see all the photos etc. we upload.
Milly & Tink's Facebook Page
I'd love it if we managed to get lots of likes on there (and so would the pups haha!)
:)
Thanks for reading!
xxx
Saturday, 28 January 2012
End Of Life Plans?
I had clinic Wednesday, I assumed it was just going to be a typical day 7 of IV's checkup, I'd do lung function, get weighed, see the doctor, blood test, collect my next weeks worth of drugs then go home. How wrong was I?!
Basically it started with me not being able to do lung function due to my severe chest pain, I had 1 go of each test but it caused so much pain and they were worried I may cough up more blood, so they decided to stop it. I then saw the dietician who was pleased my weight had increased by 0.5kgs but it was still down 1.6kgs since I was weighed at Harefield on my fist transplant assessment in November, so obviously this isn't ideal and she has given me some advice and tips on how to increase my weight, to be honest it's nothing that I'm not already doing, I think my lungs are just using up so much energy to breathe now, every calorie is going towards that. My heart rate was also 155bpm resting, so it proves my heart is working super hard to cope with my rubbish breathing.
Then my CF consultant came in, I'd told the physio's that I had coughed up blood and just assumed it had been passed onto my doctor, but it hadn't so I told her about that and she arranged for me to have a CT scan where I will have due put in my veins so show my blood vessels in my lungs, if there are any that aren't right (which could be causing the bleeds) I will have to have a procedure to sort this, although I don't think it will come to that because this was my first proper lung bleed since 2009 I have had tiny little amounts during this time and the odd streaks of blood in my phlegm, so I don't think I will need the procedure but they want to check anyway.
Secondly, I was in what I can only describe as serious, serious amounts of pain, I was rocking back and forth in my chair and struggling to talk, needing to take a breath after each word, but then being in pain trying to take the breath in. She then said to me she could see I was in a lot of distress and wanted me to start a morphine tablet, her words were 'I know when morphine is mentioned patients usually think, oh my god I'm going to die, but she said she's had patients on it for a few years' to me I thought, thank god, because thin amount of pain is starting to get extremely difficult to cope with and I think having probably the strongest pain killer you can have should help to ease this horror! This tablet is a slow release one, which works over 12 hours but then I should carry on with my other pain killers throughout the rest of the day. She has started me on a lower dose with a view to increase if it didn't give me any side effects, other than making me very tired when I have all the different pain killers in me, I'm not having any bad side effects so I assume it will be increasd.
Josh then asked if I still needed to come to my annual review which is in February, she said no it would just exhaust me and they don't need it, she said normally annual review is when they assess you to decide a plan of action for the next year, but she said their plan for me is just to keep me alive and hope I get my transplant.
Then the worst bit was she said we should still have the annual review meeting which is usually 6 weeks after the day of tests, she said they would use this to discuss important matters. She then asked if I'd made any plans or thoughts about my funeral, or how I would want it to be at the end. I said I had plans for our wedding, being that if I wasn't well enough to wait for transplant we would marry quickly if things were going downhill, and other than knowing I want to be cremated I hadn't given it too much thought, she said it's a good idea to think about these things because I am going downhill quite fast and I guess I never know when an infection could be my last. She also said I'd be referred to palliative care soon which is sort of end of life care, they offer support and just help with things during this difficult time. I was scared when she first said it, but then I thought if something is going to hopefully help me in anyway it's not something to be afraid of.
I was a little taken aback by all of this because although I know I'm very ill and I do worry about my future, when you hear a professional basically confirming what you think, it makes it all seem very real. She was going to contact Harefield and explain I've had a bit of bad turn and hopefully see if they can get me in any earlier, I know they are very busy at the moment so I'm not expecting anything, but anything sooner than April will only be for the best.
I'm now on 3 IV's, along with all these pain killers, I'm pretty knocked out. I've been sleeping a lot more than usual but hopefully it might all help. They said ideally they would have really wanted me to be admitted into hospital that day, but I'm very stubborn and I said please give me this one week to see if the new changes help, if not of course I will have no hesitation to go in. I also no longer need to do lung function unless I am having a good day, because seeing he numbers means nothing anymore, they want to concentrate more on my symptoms, if I feel okay, I can still do it, if not, it's not something I have to try to do.
I'm still staying very positive, thinking about my funeral and things will only help if I was to pass away, it eases the pressure off my family and Josh because I will have already explained what I want, I do have a few ideas of things anyway, but I hope it doesn't come to that :) it is best to be prepared and as I said before I am very optimistic but I am still realistic and know these things could happen, there is no guarantee I will be here next year, but there is also a chance if I get on the transplant list, I may get my lungs and this time next year be completely healthy.
I still have hope, I have amazing support and so much keeping me going. I will not give up. Anything that was said to me in clinic is to help make things easier for me and those who care about me, it doesn't mean I'm going to die next week!!
That's the way I'm looking at it :)
Thank you for reading.
xxx
Basically it started with me not being able to do lung function due to my severe chest pain, I had 1 go of each test but it caused so much pain and they were worried I may cough up more blood, so they decided to stop it. I then saw the dietician who was pleased my weight had increased by 0.5kgs but it was still down 1.6kgs since I was weighed at Harefield on my fist transplant assessment in November, so obviously this isn't ideal and she has given me some advice and tips on how to increase my weight, to be honest it's nothing that I'm not already doing, I think my lungs are just using up so much energy to breathe now, every calorie is going towards that. My heart rate was also 155bpm resting, so it proves my heart is working super hard to cope with my rubbish breathing.
Then my CF consultant came in, I'd told the physio's that I had coughed up blood and just assumed it had been passed onto my doctor, but it hadn't so I told her about that and she arranged for me to have a CT scan where I will have due put in my veins so show my blood vessels in my lungs, if there are any that aren't right (which could be causing the bleeds) I will have to have a procedure to sort this, although I don't think it will come to that because this was my first proper lung bleed since 2009 I have had tiny little amounts during this time and the odd streaks of blood in my phlegm, so I don't think I will need the procedure but they want to check anyway.
Secondly, I was in what I can only describe as serious, serious amounts of pain, I was rocking back and forth in my chair and struggling to talk, needing to take a breath after each word, but then being in pain trying to take the breath in. She then said to me she could see I was in a lot of distress and wanted me to start a morphine tablet, her words were 'I know when morphine is mentioned patients usually think, oh my god I'm going to die, but she said she's had patients on it for a few years' to me I thought, thank god, because thin amount of pain is starting to get extremely difficult to cope with and I think having probably the strongest pain killer you can have should help to ease this horror! This tablet is a slow release one, which works over 12 hours but then I should carry on with my other pain killers throughout the rest of the day. She has started me on a lower dose with a view to increase if it didn't give me any side effects, other than making me very tired when I have all the different pain killers in me, I'm not having any bad side effects so I assume it will be increasd.
Josh then asked if I still needed to come to my annual review which is in February, she said no it would just exhaust me and they don't need it, she said normally annual review is when they assess you to decide a plan of action for the next year, but she said their plan for me is just to keep me alive and hope I get my transplant.
Then the worst bit was she said we should still have the annual review meeting which is usually 6 weeks after the day of tests, she said they would use this to discuss important matters. She then asked if I'd made any plans or thoughts about my funeral, or how I would want it to be at the end. I said I had plans for our wedding, being that if I wasn't well enough to wait for transplant we would marry quickly if things were going downhill, and other than knowing I want to be cremated I hadn't given it too much thought, she said it's a good idea to think about these things because I am going downhill quite fast and I guess I never know when an infection could be my last. She also said I'd be referred to palliative care soon which is sort of end of life care, they offer support and just help with things during this difficult time. I was scared when she first said it, but then I thought if something is going to hopefully help me in anyway it's not something to be afraid of.
I was a little taken aback by all of this because although I know I'm very ill and I do worry about my future, when you hear a professional basically confirming what you think, it makes it all seem very real. She was going to contact Harefield and explain I've had a bit of bad turn and hopefully see if they can get me in any earlier, I know they are very busy at the moment so I'm not expecting anything, but anything sooner than April will only be for the best.
I'm now on 3 IV's, along with all these pain killers, I'm pretty knocked out. I've been sleeping a lot more than usual but hopefully it might all help. They said ideally they would have really wanted me to be admitted into hospital that day, but I'm very stubborn and I said please give me this one week to see if the new changes help, if not of course I will have no hesitation to go in. I also no longer need to do lung function unless I am having a good day, because seeing he numbers means nothing anymore, they want to concentrate more on my symptoms, if I feel okay, I can still do it, if not, it's not something I have to try to do.
I'm still staying very positive, thinking about my funeral and things will only help if I was to pass away, it eases the pressure off my family and Josh because I will have already explained what I want, I do have a few ideas of things anyway, but I hope it doesn't come to that :) it is best to be prepared and as I said before I am very optimistic but I am still realistic and know these things could happen, there is no guarantee I will be here next year, but there is also a chance if I get on the transplant list, I may get my lungs and this time next year be completely healthy.
I still have hope, I have amazing support and so much keeping me going. I will not give up. Anything that was said to me in clinic is to help make things easier for me and those who care about me, it doesn't mean I'm going to die next week!!
That's the way I'm looking at it :)
Thank you for reading.
xxx
Tuesday, 24 January 2012
Photo Shoot, Filming & Coughing Up Blood.. All In A Days Work
On Friday I had the lovely film crew round from the CF trust, Oli, Holly, Paul and Craig. I wasn't exactly sure what I was going to be filmed for but I knew it had something to do with CF week and a video raising awareness of CF! I still don't know 100% but I just do as I'm told :D hehe!
There were cameras and lights galore, 7 people in the house, including Josh, Mum and I, two mad little puppies in our, not so large living room. It was pretty manic but we got the job done.
I simply had to answer a range of questions, most of which I'd spoken about before, but there were some which I hadn't really been asked, particularly questions regarding whether I think I'm going to get my transplant, the second was how do Josh and I feel knowing we have to have a 'plan B' wedding in place in case things don't go to plan, also at what stage will plan B become the actual plan.
It was very thought-provoking and I guess my simple answer is that I always try to remain as optimistic but as realistic as I can. I know the stats, I know the figures, if I do get put on the active transplant list, there is a 50% chance I won't get a transplant, a 10% chance I won't make it through the operation, then there are percentages for how long you will live post transplant, 30 days, 1 year, 5 years, 10+ years. Doctor Carby told me at my assessment they usually predict the 5 year percentage depending on the way the first year goes, if you have a pretty smooth year, you have a good chance of having an extended life as opposed to if things are not so good, this means the chances are reduced but by no means out of the question.
It's important to stay realistic because those statistics are there for a reason and that reason is that it is real, 50% really won't get their transplant. There is no hiding from that fact, but on the other hand, if I didn't stay optimistic I wouldn't be living my life I would just be waiting to die, just another stat, I don't want that to be me and I hope it won't, therefore I find it important to stay positive and have belief that it will happen :)
There were two super cool things that happened during the filming, the first was using the clapper board, action... Lol! The second was hearing 'that's a wrap' when we were finished, it was very movie like and one of the guys asked me if I'd done anything like this before, I said I had been on the news twice, they said I was very good and seemed a natural. So my career choice now, is an actress ;) clearly a joke, but hey!
On Monday I had a photographer come round on behalf of the CF trust to take some photos. I had various different photos done, simple shots, photos with me and Josh, some with the puppies, some of me playing poker, pictures with oxygen on and me on my iPad as that is what I do most of the day! Haha. It was fun :)
The not so fun news, was that in the space of 2.5 days I have coughed up blood 3 times, two of them were not too much but the other one was quite bad so it was scary, I said if I coughed up anymore I would go to A&E as I was told by my CF team it could indicate a lung collapse or pneumonia etc. but so far there hasn't been anymore, other than some bad chest pain I've felt okay. So I'm happy to get through Tuesday then I'm off to clinic Wednesday anyway for my day 7 IV checkup. I'm hoping there isn't a problem and I can be 'fixed' (if only) if not, I might have to go in, but I will wait and see what happens Wednesday.
Before that though, Wednesday morning we pick up our new car :D we have finally got a motability car, I lose £200 a month but the only thing we have to pay for is petrol, so it works out okay. It's a brand new Seat Leon, in white. Very excited because we are finally getting a nice up to date car.
That is about all for now, I will probably blog Wednesday night unless I'm too tired on what is decided at clinic, please keep your fingers crossed that I am okay to carry on at home and there is no serious problems :)
Thanks for reading.
xxx
There were cameras and lights galore, 7 people in the house, including Josh, Mum and I, two mad little puppies in our, not so large living room. It was pretty manic but we got the job done.
I simply had to answer a range of questions, most of which I'd spoken about before, but there were some which I hadn't really been asked, particularly questions regarding whether I think I'm going to get my transplant, the second was how do Josh and I feel knowing we have to have a 'plan B' wedding in place in case things don't go to plan, also at what stage will plan B become the actual plan.
It was very thought-provoking and I guess my simple answer is that I always try to remain as optimistic but as realistic as I can. I know the stats, I know the figures, if I do get put on the active transplant list, there is a 50% chance I won't get a transplant, a 10% chance I won't make it through the operation, then there are percentages for how long you will live post transplant, 30 days, 1 year, 5 years, 10+ years. Doctor Carby told me at my assessment they usually predict the 5 year percentage depending on the way the first year goes, if you have a pretty smooth year, you have a good chance of having an extended life as opposed to if things are not so good, this means the chances are reduced but by no means out of the question.
It's important to stay realistic because those statistics are there for a reason and that reason is that it is real, 50% really won't get their transplant. There is no hiding from that fact, but on the other hand, if I didn't stay optimistic I wouldn't be living my life I would just be waiting to die, just another stat, I don't want that to be me and I hope it won't, therefore I find it important to stay positive and have belief that it will happen :)
There were two super cool things that happened during the filming, the first was using the clapper board, action... Lol! The second was hearing 'that's a wrap' when we were finished, it was very movie like and one of the guys asked me if I'd done anything like this before, I said I had been on the news twice, they said I was very good and seemed a natural. So my career choice now, is an actress ;) clearly a joke, but hey!
On Monday I had a photographer come round on behalf of the CF trust to take some photos. I had various different photos done, simple shots, photos with me and Josh, some with the puppies, some of me playing poker, pictures with oxygen on and me on my iPad as that is what I do most of the day! Haha. It was fun :)
The not so fun news, was that in the space of 2.5 days I have coughed up blood 3 times, two of them were not too much but the other one was quite bad so it was scary, I said if I coughed up anymore I would go to A&E as I was told by my CF team it could indicate a lung collapse or pneumonia etc. but so far there hasn't been anymore, other than some bad chest pain I've felt okay. So I'm happy to get through Tuesday then I'm off to clinic Wednesday anyway for my day 7 IV checkup. I'm hoping there isn't a problem and I can be 'fixed' (if only) if not, I might have to go in, but I will wait and see what happens Wednesday.
Before that though, Wednesday morning we pick up our new car :D we have finally got a motability car, I lose £200 a month but the only thing we have to pay for is petrol, so it works out okay. It's a brand new Seat Leon, in white. Very excited because we are finally getting a nice up to date car.
That is about all for now, I will probably blog Wednesday night unless I'm too tired on what is decided at clinic, please keep your fingers crossed that I am okay to carry on at home and there is no serious problems :)
Thanks for reading.
xxx
Friday, 20 January 2012
Update
I'm back on IV's again, I managed a whopping 2 weeks off. Wooweeee lol. It's still January and I'm on my second course of IV's in 2012 lol.
I looked at my annual review letter earlier from Feb 2011 and it said in 2010 I had two courses of IV's, one in May which I only had as a precaution due to going abroad, it's always best to cover yourself when going on holiday because it's not ideal to get sick! Also you have to be in as best condition to fly. Obviously this doesn't apply to me anymore, I can no longer get any travel insurance and as I use oxygen and a wheelchair, it's not easy to sort all these things out. Anyway, the second course of IV's was November which was also when transplant was first mentioned to me and they thought I was ready to be referred but obviously my weight was too low.
Then in 2011 I had 9 courses of IV's two of which were 3 weeks courses, so I spent a total of 20 weeks on IV's compared to 4 weeks the previous year! What a difference, it's scary how quickly things have changed, I used to rarely need IV's because I would have just tried to cope and tended to get away with it. But now my breathing and coughing is so difficult to deal with, as soon as I start slipping I have to have IV's to prevent my infection getting so out of control it could end up being a serious problem.
When I saw the transplant team at Harefield they said my lungs looked pretty bad and they also said due to that a bad infection/nasty bug/flu could kill me, for example if I got the flu virus, pneumonia etc. so it's very important for me to stay on top of my health, even though IV's are one of the worst things to put up with, I can deal with everything else but IV's suck. I suffer so badly with side effects, despite taking tablets to control the problems, like sickness, headaches etc. it still ruins me and basically knocks me out for the entire course. Something which is supposed to be doing good, tends to make me feel so bad I wonder why I bothered starting them in the first place, lol!! IV's rarely make me feel 'better' anymore and that is why I have to have them so often, I only feel a little less breathless while I'm on them, then the day after I stop I go downhill again immediately and feel back to square one again. So it is annoying, but as I said, when my CRP (infection levels) are elevated, I have to have them to get those numbers back down, they should be below 10 at least, I don't know what mine were this time, I will find out when I go to back for my day 7 checkup next Wednesday.
I did receive some good news at clinic, I've been put on a different pain killer, Papworth usually only prescribe Tramadol as the strongest pain killers but it did not agree with me, so I'm on something else nownwhich has definitely helped :).
The second bit of good news was regarding my liver, obviously at my assessment Harefield were slightly concerned about my liver disease because Papworth hadn't sent much information about it, to what extent it was etc. anyway, I asked my consultant if this was a reason to worry about not being listed and she said, once Harefield got my liver write-up they were happy, I am seen by Addenbrookes for my liver and their consultant said on my most recent ultrasound scan, everything seemed okay and the only reason I am said to have 'liver disease' is because I have early stages of it, but mainly because my blood doesn't clot too well despite having high doses of Vitamin K, IV and oral tablets, nothing really improved my numbers. But they said this might not even be due to my liver, it could be because I am underweight and my body doesn't have all the proper nutrients required to produce clotting factors. So I will take this as a positive because unless my numbers are so drastic that there is a risk I could bleed to death during transplant or something, then I think I'm okay... Time will tell, but for now, I'm less worried :)
My weight was down but I have been having a lot of sickness and stomach issues lately, so I'm hoping once this passes and I'm not sick so much from coughing particularly, then I will start gaining again.
That is about all to update on :)
Thank you for reading.
xxx
I looked at my annual review letter earlier from Feb 2011 and it said in 2010 I had two courses of IV's, one in May which I only had as a precaution due to going abroad, it's always best to cover yourself when going on holiday because it's not ideal to get sick! Also you have to be in as best condition to fly. Obviously this doesn't apply to me anymore, I can no longer get any travel insurance and as I use oxygen and a wheelchair, it's not easy to sort all these things out. Anyway, the second course of IV's was November which was also when transplant was first mentioned to me and they thought I was ready to be referred but obviously my weight was too low.
Then in 2011 I had 9 courses of IV's two of which were 3 weeks courses, so I spent a total of 20 weeks on IV's compared to 4 weeks the previous year! What a difference, it's scary how quickly things have changed, I used to rarely need IV's because I would have just tried to cope and tended to get away with it. But now my breathing and coughing is so difficult to deal with, as soon as I start slipping I have to have IV's to prevent my infection getting so out of control it could end up being a serious problem.
When I saw the transplant team at Harefield they said my lungs looked pretty bad and they also said due to that a bad infection/nasty bug/flu could kill me, for example if I got the flu virus, pneumonia etc. so it's very important for me to stay on top of my health, even though IV's are one of the worst things to put up with, I can deal with everything else but IV's suck. I suffer so badly with side effects, despite taking tablets to control the problems, like sickness, headaches etc. it still ruins me and basically knocks me out for the entire course. Something which is supposed to be doing good, tends to make me feel so bad I wonder why I bothered starting them in the first place, lol!! IV's rarely make me feel 'better' anymore and that is why I have to have them so often, I only feel a little less breathless while I'm on them, then the day after I stop I go downhill again immediately and feel back to square one again. So it is annoying, but as I said, when my CRP (infection levels) are elevated, I have to have them to get those numbers back down, they should be below 10 at least, I don't know what mine were this time, I will find out when I go to back for my day 7 checkup next Wednesday.
I did receive some good news at clinic, I've been put on a different pain killer, Papworth usually only prescribe Tramadol as the strongest pain killers but it did not agree with me, so I'm on something else nownwhich has definitely helped :).
The second bit of good news was regarding my liver, obviously at my assessment Harefield were slightly concerned about my liver disease because Papworth hadn't sent much information about it, to what extent it was etc. anyway, I asked my consultant if this was a reason to worry about not being listed and she said, once Harefield got my liver write-up they were happy, I am seen by Addenbrookes for my liver and their consultant said on my most recent ultrasound scan, everything seemed okay and the only reason I am said to have 'liver disease' is because I have early stages of it, but mainly because my blood doesn't clot too well despite having high doses of Vitamin K, IV and oral tablets, nothing really improved my numbers. But they said this might not even be due to my liver, it could be because I am underweight and my body doesn't have all the proper nutrients required to produce clotting factors. So I will take this as a positive because unless my numbers are so drastic that there is a risk I could bleed to death during transplant or something, then I think I'm okay... Time will tell, but for now, I'm less worried :)
My weight was down but I have been having a lot of sickness and stomach issues lately, so I'm hoping once this passes and I'm not sick so much from coughing particularly, then I will start gaining again.
That is about all to update on :)
Thank you for reading.
xxx
Friday, 13 January 2012
Lack of blogging!
I apologise for my lack of blogs lately, I really haven't been too well and I have been checking in on Facebook but I haven't been doing much other than sitting on the sofa, in my pyjamas, cuddling the puppies.
Wednesday was Josh's birthday, we went out for a meal with his family and my parents. It was good fun and we all had a laugh as always! It was a carvery which is a love of mine, particularly roast potatoes :) I did try and hide how unwell I was, I was drugged up on pain killers but I still hate people seeing how bad I am, I don't want people to feel sorry for me or anything like that and I like to feel as if I am beating cf because I am still doing what I enjoy, just with the added extra of strong pain killers lol!
When people come round our house, I feel I'm in my own environment and it's acceptable for me to show I'm not well, whether it be because I'm lazing around in my pyjamas, or on my oxygen etc. it's different than being out in public. My close family and Josh understand how bad I am because I don't hide it from them, but when people ask how I am I usually say struggling a bit, but I'm okay, because people probably don't want to hear me giving them a sob story haha!!
Health wise, I am pretty bad. I have been getting some severe chest pains, I have pleurisy very often and I do have a flare up at the moment, but I've also had these new pains, stabbing pains which feel like they are coming from the depths of my lungs, every single breath hurts at the moment. I do have clinic on Wednesday so I will suggest an X-ray just in case there is anything to worry about, as these pains are new it could be something but it could equally just be a very bad infection. The IV's I had over Christmas and new year did very little, I feel worse now than before I started them. I was on them for 3 weeks, then I stopped to see if it was the IV's making me feel bad but that didn't seem to be the case so I will ask to change to some new IV's which will hopefully kick this evil infection in the backside, failing all that, or if there is something very wrong, I will have no option but to go into hospital. But at the moment that is last resort, because I hate it!
I have my pre-transplant dental check up on Monday, you have to have all dental work sorted before you can be listed, I have a chipped tooth and may need a filling so I will find out that on Monday. I also have the CF trust coming round next Friday to do some filming for CF week, I'm not 100% sure what sort of thing it is, which is why this is pretty vague but I will find out I guess :)
So that is about all for now! I promise I will update quicker next time.
Thank you for reading.
xxx
Wednesday was Josh's birthday, we went out for a meal with his family and my parents. It was good fun and we all had a laugh as always! It was a carvery which is a love of mine, particularly roast potatoes :) I did try and hide how unwell I was, I was drugged up on pain killers but I still hate people seeing how bad I am, I don't want people to feel sorry for me or anything like that and I like to feel as if I am beating cf because I am still doing what I enjoy, just with the added extra of strong pain killers lol!
When people come round our house, I feel I'm in my own environment and it's acceptable for me to show I'm not well, whether it be because I'm lazing around in my pyjamas, or on my oxygen etc. it's different than being out in public. My close family and Josh understand how bad I am because I don't hide it from them, but when people ask how I am I usually say struggling a bit, but I'm okay, because people probably don't want to hear me giving them a sob story haha!!
Health wise, I am pretty bad. I have been getting some severe chest pains, I have pleurisy very often and I do have a flare up at the moment, but I've also had these new pains, stabbing pains which feel like they are coming from the depths of my lungs, every single breath hurts at the moment. I do have clinic on Wednesday so I will suggest an X-ray just in case there is anything to worry about, as these pains are new it could be something but it could equally just be a very bad infection. The IV's I had over Christmas and new year did very little, I feel worse now than before I started them. I was on them for 3 weeks, then I stopped to see if it was the IV's making me feel bad but that didn't seem to be the case so I will ask to change to some new IV's which will hopefully kick this evil infection in the backside, failing all that, or if there is something very wrong, I will have no option but to go into hospital. But at the moment that is last resort, because I hate it!
I have my pre-transplant dental check up on Monday, you have to have all dental work sorted before you can be listed, I have a chipped tooth and may need a filling so I will find out that on Monday. I also have the CF trust coming round next Friday to do some filming for CF week, I'm not 100% sure what sort of thing it is, which is why this is pretty vague but I will find out I guess :)
So that is about all for now! I promise I will update quicker next time.
Thank you for reading.
xxx
Monday, 2 January 2012
What A Year! 2011 and Looking Ahead to 2012...
I am in two minds about this year. The first is so glad it's over, the second is that this year has been quite successful.
My health has changed a lot this year, especially when I compare myself to last year, I could climb the stairs, I didn't have a wheelchair, I had 3 courses of IV's because sheer stubbornness tended to get me through my bugs. Then this year, I started oxygen in January, overnight and when walking then I was told to use it when I was struggling with my breathing, so the usage became more frequent (at home, still not 100% comfortable wearing it in public.) I use my wheelchair a lot, other than small walks. I have had 9 courses of IV's and have spent 20 weeks of the year on the evil IV's, also the more unwell I am, the worse I suffer with the IV side effects. Last year I was advised to consider transplant, now I am actually being assessed and if I am deemed 'well enough' at my assessment in April and everything goes to plan, I will be on the active transplant waiting list.
Over the course of the year I have seen my health deteriorate quite fast and my ever-increasing need for IV's and my inability to do simple tasks, such as washing my hair, getting dressed, climbing the stairs without the help of Josh is a constant reminder of just how bad I have got.
Also this year I experienced my first ever loss, I have lost family, my great Nanny, my second cousin David. But losing my puppy Foxxy was the hardest thing I have ever gone through, I couldn't eat for days because all I wanted to do was cry and grieve. Losing anybody close is difficult but I'd never gone through something that close to home before and it was horrible. I still miss her so much and I would give anything to have her back, but I take comfort in knowing if we did still have Foxxy we wouldn't have been able to give these new little babies a great, loving home, with a Mummy and Daddy that spoil them and treat them like our children not just pets. I know Foxxy is watching over us and she will protect us and the new pups :) xxxxx
This year has also had its good sides. When I decided to make my blog public after 2 years of writing privately, only to those with CF, I never expected it to have generated so much. I thought maybe a handful of people would have read it and maybe I'd get the odd comment but what actually happened was unreal.
Firstly my story was in my local newspaper the Evening Star, I was also on ITV and BBC local news, on Radio Suffolk and I also was in the daily mail after fronting a national organ donation campaign with Live Life Then Give Live. I was invited to attend the Evening Star press ball, where I met some wonderful people and received a number of amazing gifts through sheer generosity. The ball also raised a lot of money for the CF trust and various other local charities. I also won the Stars of Suffolk outstanding bravery award which was a complete shock but an absolute honour, not for one minute did I expect to win so when I actually did, I was very emotional and cried my way onto the stage, lol! I became an ambassador for LLTGL, next year I hope to raise even more awareness about organ donation and hopefully, along with the other amazing people working with LLTGL, we can put an end to the statistic that only 50% of people on the list will get their transplant in time. We also did the abseil for the CF trust where my family and friends raised over £3000. A good friend of mine, Jo, had her birthday party and wanted all of her 'presents' to be donations to CF.
One of the most important things that has happened this year is realising who will be there when things go wrong, who will be by your side when you are too weak to do anything, those who don't just perk up when you are unwell, but the special ones who are there through the good and the bad times.
Firstlt my parents, Jacqui, Gary and my Stepdad Matt, they are absolutely fantastic, I couldn't ask for anything more, they are always there for me no matter what.
Josh is amazing, I don't think I need to explain exactly why because it's very obvious how important he is to me, we have almost been together 3 years and have been engaged for 1 year. He gave up his job as an estate agent this year to become my full time carer, so I was able to move in with him permanently and I am forever thankful that he has done this for me.
My Nanny and Grandad, Margaret and Len - they always take me back and forth to clinic, visit me many times when I am in hospital and are always there to to help when I need it, I always get a text from my Nanny every clinic appointment to say good luck and that they hope it goes well, this sort of thing keeps me going because I know they are thinking of me.
Likewise my Auntie Hayley, I get texts from her too before clinic and her first question is always, how are you feeling at the moment? We also always have giggles at poker :)
My Sister Kim is great too and we have just found out the amazing news she is pregnant so I am going to be an Auntie :) I love my sister to pieces and I am so so happy for her and her fiancé Kieren.
Also Josh's family have been so supportive, some peoples parents may not want their son/daughter to be with someone who has as much baggage as me (lol!) and ultimately an uncertain future, but they have been great and very understanding particularly over the last year when things have got quite difficult for me.
I have also made some great friends this year mainly people with CF, like Kimberley Kneil, she is a lovely, caring person and when we lost Foxxy she sent me a heart shaped pendant with a hologram of me and Fox on it with very kind words in the other side, I thought this was such a wonderful thing and it is my little lucky charm, she is also waiting to be listed for a transplant at Harefield and I have no doubt when we both receive them we will be meeting up plenty of times :D
Also, Alan Crowther, we became very close this year and he has been a great support and a good friend particularly when I was in hospital, we would sit up until silly hours talking on msn, he is going through a difficult time at the moment as he is unable to have a transplant in the UK and is becoming very sick and I am constantly thinking of him and wishing him better.
Another friend is Victoria Glen, she is a lovely girl and whenever I need advice, or just someone to chat to, she is there. She hasn't had the best year but I am positive good things will happen for her this year because she is so lovely she deserves a break :) and when I have had my transplant, I am travelling up to Scotland where we are going to get absolutely drunk together because we are actual alcoholics, hehe!
Finally people like Clare Cruickshank, Kirstie Tancock, Chantelle Hughes, Emily Thackray, Pete Franklin and anyone else I may have missed, I apologise. But it's been a great year for making new friends and if I receive my transplant I have a lot of wonderful people to meet up with :).
Finally, the fantastic people who read my blog, the support I have received has been overwhelming and I thank you all for your kindness :)
So I'm going to end this blog by saying that my new years resolution is to focus on what is important. Staying as well as possible, getting myself on the transplant list, continuing to work hard raising awareness for CF and organ donation and looking out for the people I care about and being eternally grateful to the amazing people who care about me.
Thanks for reading and I wish you all a happy, healthy 2012!
xxx
My health has changed a lot this year, especially when I compare myself to last year, I could climb the stairs, I didn't have a wheelchair, I had 3 courses of IV's because sheer stubbornness tended to get me through my bugs. Then this year, I started oxygen in January, overnight and when walking then I was told to use it when I was struggling with my breathing, so the usage became more frequent (at home, still not 100% comfortable wearing it in public.) I use my wheelchair a lot, other than small walks. I have had 9 courses of IV's and have spent 20 weeks of the year on the evil IV's, also the more unwell I am, the worse I suffer with the IV side effects. Last year I was advised to consider transplant, now I am actually being assessed and if I am deemed 'well enough' at my assessment in April and everything goes to plan, I will be on the active transplant waiting list.
Over the course of the year I have seen my health deteriorate quite fast and my ever-increasing need for IV's and my inability to do simple tasks, such as washing my hair, getting dressed, climbing the stairs without the help of Josh is a constant reminder of just how bad I have got.
Also this year I experienced my first ever loss, I have lost family, my great Nanny, my second cousin David. But losing my puppy Foxxy was the hardest thing I have ever gone through, I couldn't eat for days because all I wanted to do was cry and grieve. Losing anybody close is difficult but I'd never gone through something that close to home before and it was horrible. I still miss her so much and I would give anything to have her back, but I take comfort in knowing if we did still have Foxxy we wouldn't have been able to give these new little babies a great, loving home, with a Mummy and Daddy that spoil them and treat them like our children not just pets. I know Foxxy is watching over us and she will protect us and the new pups :) xxxxx
This year has also had its good sides. When I decided to make my blog public after 2 years of writing privately, only to those with CF, I never expected it to have generated so much. I thought maybe a handful of people would have read it and maybe I'd get the odd comment but what actually happened was unreal.
Firstly my story was in my local newspaper the Evening Star, I was also on ITV and BBC local news, on Radio Suffolk and I also was in the daily mail after fronting a national organ donation campaign with Live Life Then Give Live. I was invited to attend the Evening Star press ball, where I met some wonderful people and received a number of amazing gifts through sheer generosity. The ball also raised a lot of money for the CF trust and various other local charities. I also won the Stars of Suffolk outstanding bravery award which was a complete shock but an absolute honour, not for one minute did I expect to win so when I actually did, I was very emotional and cried my way onto the stage, lol! I became an ambassador for LLTGL, next year I hope to raise even more awareness about organ donation and hopefully, along with the other amazing people working with LLTGL, we can put an end to the statistic that only 50% of people on the list will get their transplant in time. We also did the abseil for the CF trust where my family and friends raised over £3000. A good friend of mine, Jo, had her birthday party and wanted all of her 'presents' to be donations to CF.
One of the most important things that has happened this year is realising who will be there when things go wrong, who will be by your side when you are too weak to do anything, those who don't just perk up when you are unwell, but the special ones who are there through the good and the bad times.
Firstlt my parents, Jacqui, Gary and my Stepdad Matt, they are absolutely fantastic, I couldn't ask for anything more, they are always there for me no matter what.
Josh is amazing, I don't think I need to explain exactly why because it's very obvious how important he is to me, we have almost been together 3 years and have been engaged for 1 year. He gave up his job as an estate agent this year to become my full time carer, so I was able to move in with him permanently and I am forever thankful that he has done this for me.
My Nanny and Grandad, Margaret and Len - they always take me back and forth to clinic, visit me many times when I am in hospital and are always there to to help when I need it, I always get a text from my Nanny every clinic appointment to say good luck and that they hope it goes well, this sort of thing keeps me going because I know they are thinking of me.
Likewise my Auntie Hayley, I get texts from her too before clinic and her first question is always, how are you feeling at the moment? We also always have giggles at poker :)
My Sister Kim is great too and we have just found out the amazing news she is pregnant so I am going to be an Auntie :) I love my sister to pieces and I am so so happy for her and her fiancé Kieren.
Also Josh's family have been so supportive, some peoples parents may not want their son/daughter to be with someone who has as much baggage as me (lol!) and ultimately an uncertain future, but they have been great and very understanding particularly over the last year when things have got quite difficult for me.
I have also made some great friends this year mainly people with CF, like Kimberley Kneil, she is a lovely, caring person and when we lost Foxxy she sent me a heart shaped pendant with a hologram of me and Fox on it with very kind words in the other side, I thought this was such a wonderful thing and it is my little lucky charm, she is also waiting to be listed for a transplant at Harefield and I have no doubt when we both receive them we will be meeting up plenty of times :D
Also, Alan Crowther, we became very close this year and he has been a great support and a good friend particularly when I was in hospital, we would sit up until silly hours talking on msn, he is going through a difficult time at the moment as he is unable to have a transplant in the UK and is becoming very sick and I am constantly thinking of him and wishing him better.
Another friend is Victoria Glen, she is a lovely girl and whenever I need advice, or just someone to chat to, she is there. She hasn't had the best year but I am positive good things will happen for her this year because she is so lovely she deserves a break :) and when I have had my transplant, I am travelling up to Scotland where we are going to get absolutely drunk together because we are actual alcoholics, hehe!
Finally people like Clare Cruickshank, Kirstie Tancock, Chantelle Hughes, Emily Thackray, Pete Franklin and anyone else I may have missed, I apologise. But it's been a great year for making new friends and if I receive my transplant I have a lot of wonderful people to meet up with :).
Finally, the fantastic people who read my blog, the support I have received has been overwhelming and I thank you all for your kindness :)
So I'm going to end this blog by saying that my new years resolution is to focus on what is important. Staying as well as possible, getting myself on the transplant list, continuing to work hard raising awareness for CF and organ donation and looking out for the people I care about and being eternally grateful to the amazing people who care about me.
Thanks for reading and I wish you all a happy, healthy 2012!
xxx
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