Wednesday, 30 May 2012

I'm On The List!

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 :)

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!

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 :)

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 :)