When these words were first mentioned to me, I was in shock and extremely frightened - to me, the hospice is where people go to die, so having those words said to me indicated that I really am dying. Even though I know it and everyone around me knows, if I don't get my transplant, I'm going to die, but hearing it from professional like my CF team at Papworth really makes it hit home.
I had the community support nurse from St Elizabeth Hospice come round for a meeting today, we'd been communicating via email but there is only so much you can do over email, we needed to meet and go through everything. On Wednesday in clinic I saw Julie, my palliative care nurse and we spoke about a variety of things which she said the nurse could help with, such as pain management, helping my anxiety and many others, so Josh and I thought of everything we wanted to say and went through it with her today.
She is going to speak with my GP as soon as possible about increasing my pain relief dose as it hasn't really changed in over 2 months and I'm now 'used to' the dose, so it isn't as effective, I'm on the starter dose for Oramorph (morphine) which is between 2.5-5mls, I take 60mg of Oxycontin twice a day (a 12 hour release Morphine) which basically covers my background pain, I also take 1g of Paracetamol every 4-5 hours for general pain and also to control my temperatures as I tend to get fevers and temperatures reaching as high as 38 degrees which isn't pleasant, the Paracetamol dose can't really be changed as you aren't allowed to take any more than 8 tablets a day, but my Oramorph dose can be increased and so can my Oxycontin, so I think that is the plan. I'm also on an anti-anxiety tablet which I take before sleep, as this is when I'm most anxious, or when needed during the day, eg. when I'm going for a long car journey. I'm also on an anti-depressant, which doubles up as an anti-anxiety tablet too but it also has side effects of weight gain and drowsiness so I was put on this tablet in the hope it would help my weight and my sleeping pattern but I've been on it now for almost 3 years and the dose hasn't changed, so that could also be altered.
I am potentially going to be switching to a much stronger anti-anxiety tablet called Diazepam, which is a is a muscle relaxant so it enables the body to relax, it should allow me to 'switch off' my brain at night and get sleep without waking up scared and it might help my panic attacks too, if not it should help with my sleeping and my anxiety. So I hope that my GP is okay with all this and things will start to improve soon, it's hard enough dealing with CF, waiting for a transplant and all the other health issues I have, having mental health problems too is difficult, so if anything can be done to help my anxiety and my emotions, that will be a breath of fresh air, which is always welcomed, lol!
We also spoke about where I'd like to die if I didn't get my transplant and for whatever reason things didn't go to plan, I had always said I'd like to be at home as opposed to in Papworth because I want to be with my puppies, I want to be surrounded by my family and being in Pap is 1.5 hours away, if I suddenly went downhill, some of my family might not get there in time. She then informed me that I could always go into St Elizabeth's Hospice because you are allowed to take pets there, I'd be put in a side-room, so no risk of infections or catching anything from anyone else and it is in Ipswich, so I'd be near everyone if the unthinkable happened, so this has definitely made me think about it differently, my pups are a huge thing for me and I absolutely hate being away from them, they are my babies and even going out for an hour makes me miss them like crazy, so thinking I'd be without them if I died is awful, so knowing they could be with me, I'd be made comfortable and I'd be in a safe environment, at home there is not guarentee I will be 'comfortable' however, she did say there are a team that would come out to me at home and basically look after me, but I'm definitely thinking about that now. I am going to have a visit after I've been in hospital to see what I think, get a feel for the place and see if it's something I'd like to put into my 'plans and wishes.'
I was also informed about complimentary therapy, I can either go to the hospice or they can come out to me, basically they do aromatherapy, massages etc. Which would be amazing, nothing better than a lovely relaxing massage, so I'm being referred for that! She also said they have supportive services for family members, I have a few people in my family who find it difficult coming to terms with everything that is happening and they can arrange meetings with my family, or myself, to hopefully ease their worries.
All in all, it was extremely productive meeting with her and I feel we got a lot out of it, she got to my house at 4 and didn't leave until 6.45!! It doesn't matter how breathless I am, I can certainly chat :)
We called Papworth today and they said they think there will be a bed ready for me on Friday to go in and start the NIV machine (bi-pap/nippy) which at first I struggled to accept, to me it was kind of last resort, I always thought as long as I'm not on oxygen, or as long as I'm not on NIV, there's always something new to try, but now I'm on 24 hour oxygen, I'm on all varieties of pain meds and I'll now be on Bi-pap, the only option I will have is transplant, so to begin with I couldn't deal with thinking about it, but now I have realised I'm extremely unwell and the longer I put it off, the more unwell I can become. It's not the easiest thing to tolerate and some people can never get on with it, but I know I don't really have a choice, my friends who have used it said it allowed them to have a rest as it essentially breathes for you, so you can just lay there/sleep with it on and let it do all the work, I'd just chill. Many people say it allowed them to have better nights sleep as they weren't struggling to breathe all night and it then helped during the day as they felt rested and weren't so exhausted, so it sounds like it could hopefully be really helpful for me. I had another 'scary moment' the other day when I couldn't breathe, I felt so blocked up with phlegm, nothing was helping and it was like the more I coughed and cleared the stuff, within seconds it was back and I was drowning again. So basically I had to have a huge cough every 3-4 breaths, which made me so tired and exhausted, my muscles in my stomach were hurting and I was almost sick many times, eventually my body let me sleep and I woke up a few times in the night not breathing very well, so this was the final straw for me and I thought that's it, I'm going to go in and start this damn machine!! So please keep everything crossed I get on with it okay, I know it's not going to be the most comfortable thing, but anything that helps me to get sleep or aids my breathing in anyway will be great. This was also something that the nurse today helped with because Josh is never sure whether to call an ambulance when I have this funny breathing moments, sometimes they pass so quickly but other times they last a while, but he always has in the back of his mind that I don't want to die in hospital, so he's always unsure what to do and what I'd want him to do, as when these attacks happen I'm not really with it so can't tell him what to do, so thankfully she gave him a phone number which is a 24 hour helpline, they have nurses/doctors/health care assistants and advisors that can come out to help me without calling an ambulance, but they can also help Josh to know if he should call 999 or not, so that has taken a weight off Josh's mind as he now has someone to turn to in those scary moments.
So that is pretty much all I have to say :) I feel this blog has been quite positive despite being about a rather nasty subject, I understand it's not easy for anyone to read but as I always say, I like to be as honest and open as possible, whether it's good news or bad.
Of course I can't finish this blog without a little weight update, this is a good one :) I had my feeding tube removed on Wednesday because my weight is so good and I haven't actually used it since September last year, so it was a waste of time having it. I do know that during my transplant recovery I will have to be fed via an NG tube, which is a tube that goes in your nose, down your throat and into your stomach, I tried to use it before but I couldn't pass it without being sick, but I've come to the conclusion that I will have more things after transplant bothering me, like 4 huge chest drains, a ventilator tube down my throat, catheters and lines in the most awful places, I think I can deal with a little NG tube and it would only be until I am able to eat for myself.
Regarding my weight gain, I finally hit 47kgs today. Wow. To some people that's probably nothing but it makes my BMI over 19 which is great and a figure I've never been anywhere near before, my highest ever recorded weight at Papworth was 44.3kgs, so I've totally smashed that and I just seem to keep increasing every single week, it's crazy, soon I'll be told I need to lose weight! Very strange :)
Thank you for reading.
xxx
Wednesday, 8 August 2012
Friday, 27 July 2012
I'm Still Here :)!
Hello everyone, wanted to write a quick blog to let you all know I'm still here, lol! Had a few concerned emails/facebook messages regarding my absense so just wanted to apologise - I have been pretty unwell so have been spending a lot of time relaxing and catching up on much-needed sleep, I've been trying to preserve my energy as much as possible as I don't seem to have much of it anymore, so even the most simplest task of turning over in bed, or getting up off the sofa is exhausting, brings on a coughing fit and makes me extremely breathless, so I haven't been on facebook much, just the odd browse through once a day. I also have had a cold and tonisilitus, because my nasty body wanted to punish me even more!!! I have had a mini break from IV's but I'm going back on them Wednesday as the cold has knocked me for six.
I'm happy to report I was able to go out for a meal with Josh the other night, which was lovely as other than hospital appointments I haven't been able to do too much lately.
I had breaded brie for starters, gammon and chips for main and pannacotta with sorbet for dessert, yumyum!!
It was so lovely to get out of the house for a bit (even though I am paying for it now, silly lungs)
Josh and his Dad are currently transforming our garden which is great as it's giving him something to do other than being my full-time carer, I'm glad he is still able to occupy his mind because even though I'm quite content sitting in watching TV and not doing too much, Josh isn't like that. He's also been going for bike rides, going out jogging, and going to poker when somebody can 'babysit' me lol.
Our garden is coming along great - we've got a nice new patio area, fake grass as it's easier to manage and stops the pups digging! He now has a nice little section at the end where he's growing things like peppers, strawberries and beetroot etc. They've also made the front garden nice and pretty with flowers and new grass :) obviously it's all still 'work-in-progress' but here is two photos of them currently.
I want to finish with a couple more pictures of myself, the first is a photo showing my weight gain between now and October 2010 when I weighed just 5 stone, as you will see I look very thin and I can't even believe I ever looked that underweight, people tell me now how healthy I look as I've put on just over 2 stone and looking at this picture I can totally see it now!!
My goal was to get to 7 stone even though I never thought it would be possible, but I've totally smashed that and I did make the picture about 2 weeks ago, since then I was weighed again and it was 46.2kgs. I was so stunned, totally emotional and extremely proud. Never did I think my BMI would ever be in the healthy range. It is taking a lot of getting used to, I've never had a 'belly,' I've had to purchase loads of new clothes as I've gone from a size 4, to an 8, I even got a size 10 the other day, which was most definitely a first!! Aside from the annoying belly issue I am rather happy because I now have boobs and a bum, lol!! Soon I will be told I need to diet hah!
The other pictures are just a couple of randoms...
So there you go, just a couple of photos of yours truly!
Thank you for reading and I apologise for anybody that was worried about me - the gap between now and my next blog will be shorter I promise!
xxx
I'm happy to report I was able to go out for a meal with Josh the other night, which was lovely as other than hospital appointments I haven't been able to do too much lately.
I had breaded brie for starters, gammon and chips for main and pannacotta with sorbet for dessert, yumyum!!
It was so lovely to get out of the house for a bit (even though I am paying for it now, silly lungs)
Josh and his Dad are currently transforming our garden which is great as it's giving him something to do other than being my full-time carer, I'm glad he is still able to occupy his mind because even though I'm quite content sitting in watching TV and not doing too much, Josh isn't like that. He's also been going for bike rides, going out jogging, and going to poker when somebody can 'babysit' me lol.
Our garden is coming along great - we've got a nice new patio area, fake grass as it's easier to manage and stops the pups digging! He now has a nice little section at the end where he's growing things like peppers, strawberries and beetroot etc. They've also made the front garden nice and pretty with flowers and new grass :) obviously it's all still 'work-in-progress' but here is two photos of them currently.
.JPG) |
| Back Garden |
.JPG) |
| Front Garden |
I want to finish with a couple more pictures of myself, the first is a photo showing my weight gain between now and October 2010 when I weighed just 5 stone, as you will see I look very thin and I can't even believe I ever looked that underweight, people tell me now how healthy I look as I've put on just over 2 stone and looking at this picture I can totally see it now!!
My goal was to get to 7 stone even though I never thought it would be possible, but I've totally smashed that and I did make the picture about 2 weeks ago, since then I was weighed again and it was 46.2kgs. I was so stunned, totally emotional and extremely proud. Never did I think my BMI would ever be in the healthy range. It is taking a lot of getting used to, I've never had a 'belly,' I've had to purchase loads of new clothes as I've gone from a size 4, to an 8, I even got a size 10 the other day, which was most definitely a first!! Aside from the annoying belly issue I am rather happy because I now have boobs and a bum, lol!! Soon I will be told I need to diet hah!
The other pictures are just a couple of randoms...
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| Thin me - Fat me LOL! |
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| The Pups always look after me when I'm feeling poorly x |
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| The Pups and me are in prison, although Tink seems pretty happy about it! |
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| Hellooo World! :) |
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| Pre-Meal - I wanted to have a photo without oxygen on, it's weird so used to seeing tubes across my face lol. |
So there you go, just a couple of photos of yours truly!
Thank you for reading and I apologise for anybody that was worried about me - the gap between now and my next blog will be shorter I promise!
xxx
Tuesday, 26 June 2012
New Blog and Other Things.
Tomorrow (Wednesday the 27th) will officially be 1 month on the list. Most people said it starts to feel real and normal by then, it still hasn't to me! I am still petrified but just lately I've had a few 'scary moments' where I didn't think I'd make it through the night, it's made me realise just how unwell I really am. It's extremely scary and I know I really do need to appreciate every single day. I now know just how desperately I need new lungs, so I'm hoping the call does come soon!
I have started writing a blog for the Ipswich Star Newspaper, about me, my health and obviously raising as much awareness as possible about CF and organ donation.
My first post - 'Welcome To My Life' was in todays paper and it has resulted in a lot of views on the blog website!
Feel free to have a read of it Ipswich Star Blog :)
I don't have much else to report on really, I'm struggling quite a lot, I've barely left my sofa for the past week or so, but I am going to clinic tomorrow. I'm still on 3 IV's but maybe I will see if there is anything that can be changed to hopefully allow me to pick up a bit, I'm also going to ask about a 'NIV' which is a non-invasive ventilator, it's a machine that basically breathes for you via a mask. I really need a break from breathing, it's completely exhausting and it is becoming more and more difficult, so I hope they allow me to try the NIV, I need something because this can't carry on!
In much better news, while everything else seems to be going down, my weight is going up!! Everyone keeps commenting that I look so much healthier and chubbier in the face, I tried on my favourite pair of shorts the other day (I wore them pretty much all last summer) and I couldn't get the button to do up at all, the zip wouldn't even go up, it's fantastic but has meant that I've needed to spend lots of money buying a new wardrobe as I've gone up a dress size. I'm almost at a perfect BMI which makes me feel so happy and proud, I never thought I could get to where I am today, being this unwell gaining weight is almost unheard of, but I am so pleased I'm there and still gaining! Soon I will be an actual fat whale ;)!
Thank you for reading.
xxx
I have started writing a blog for the Ipswich Star Newspaper, about me, my health and obviously raising as much awareness as possible about CF and organ donation.
My first post - 'Welcome To My Life' was in todays paper and it has resulted in a lot of views on the blog website!
Feel free to have a read of it Ipswich Star Blog :)
I don't have much else to report on really, I'm struggling quite a lot, I've barely left my sofa for the past week or so, but I am going to clinic tomorrow. I'm still on 3 IV's but maybe I will see if there is anything that can be changed to hopefully allow me to pick up a bit, I'm also going to ask about a 'NIV' which is a non-invasive ventilator, it's a machine that basically breathes for you via a mask. I really need a break from breathing, it's completely exhausting and it is becoming more and more difficult, so I hope they allow me to try the NIV, I need something because this can't carry on!
In much better news, while everything else seems to be going down, my weight is going up!! Everyone keeps commenting that I look so much healthier and chubbier in the face, I tried on my favourite pair of shorts the other day (I wore them pretty much all last summer) and I couldn't get the button to do up at all, the zip wouldn't even go up, it's fantastic but has meant that I've needed to spend lots of money buying a new wardrobe as I've gone up a dress size. I'm almost at a perfect BMI which makes me feel so happy and proud, I never thought I could get to where I am today, being this unwell gaining weight is almost unheard of, but I am so pleased I'm there and still gaining! Soon I will be an actual fat whale ;)!
Thank you for reading.
xxx
Thursday, 7 June 2012
1 Week On The List... How Do I Feel?!
So yesterday marked the first week on the transplant list. It's been an absolute whirlwind of emotions, mixed feelings, questions and more thoughts than I could ever have imagined.
It started with excitement, I came home from Papworth last Wednesday and was called on the way home with the good news that I had been finally listed, it then felt a bit like an anti-climax because I'd waited for that news for so long and I'd been working so hard to get there, it was like I no longer had anything to work towards. Of course I do, I need to maintain my weight and my sugars need to stay as controlled as possible, I need to stay well so if a call comes I can go ahead with the transplant, so I do still have things to work towards, my weight is still not perfect so I am still working really hard on that, it's really important I don't let anything slip and become complacent now I've got there, I need to stay there!
Speaking of my weight, it has increased since being listed. I lost weight recently and I think I was so stressed out about the whole will I won't I get on the list, I was convinced it was all going to come crashing down and I would be told I wasn't eligible for transplant after all the hard work I'd endured. I don't think I realised just how stressed I was, but now looking back it's so obvious, I had got slightly snappy and not just when I was unwell, I barely slept and was an emotional wreck. This all took it's toll on my weight which plummeted from 44.1kgs (2nd April - my transplant assessment at Harefield) to 40.6kgs (30th May - in clinic at Papworth) which was around an 8lb loss all during the time I was 'waiting' to find out if I was going to be listed, it's crazy how your body can react so badly to situations! So there's my tip guys, if you want to lose weight - stress yourself out!! Haha.
Anyway, my appetite has gone through the roof since my stress levels have returned to normal and I've now gained 6lbs since the 30th May I now weigh 43kg. I'm eating so much food all day and night, I'm not sleeping a lot because I'm constantly hungry, a little frustrating but I'm not complaining about wanting to eat, I would love to get higher than 44.3kgs as that is the most I've ever weighed. I'd love to achieve that and that is my new goal, when I put my mind to something I know now I can do it!
Regarding my feelings about being on the list, it's been very strange and hard to adapt to 'list life.' I'm constantly on edge and panic everytime my phone rings, you would think I'd be excited everytime the phone rings because I know how desperately I need a transplant, but it's such a huge operation and the whole thing itself scares me so much, I'm frightened of dying, I don't like pain and I know I will be in pain, I'm always afraid of the unknown and this is absolutely unknown. I can read and read other peoples experiences and their 'tales of transplant' but until I go through it myself I won't know how I will feel, how I will cope or if I will get through it. I've questioned my strength the past week more than I ever have in my life, I don't know if I'm strong enough to get through the procedure, I've been up then down and everywhere in between. I hope it settles down soon, I had a call from a private number just a few days ago and I was almost sick with fear, it wasn't Harefield it was my contract renewal (got a new phone, yaaaay) so I was actually relieved it wasn't the call which is completely not understandable, as you guys all know I've worked my butt off to get on the list, now I'm actually on it, I'm so so so scared I can't even explain it. I don't think anyone will understand unless you are in the situation and are waiting for a transplant, but then again not everyone will! I know I'm extremely unwell and without a transplant I'm not going to be alive much longer, so I know I need it, but that doesn't mean I'm ready or excited about it, even though I ignore the stats and figures you can't help but think about them and think I might not be 'the lucky one,' it might not happen for me, all I can do is wait, keep fighting and keep going! I don't have a choice because I absolutely do not want to die, so no matter how scary transplant is, or how unprepared I feel, I'm going through with it 100% :)
Transplant is the only option now and when the call comes, I will take it all in my stride! I suppose I'd like to think it will be a case of rushing around so much it will just happen and I won't actually have too much time to think about it. I know both my parents, Josh and my Stepdad are coming to wait at Harefield with me so at least I won't be sitting waiting to hear if the transplant is going ahead alone, I always need plenty of distraction because I have severe anxiety so I think it will be good for me to have them all there.
I guess I won't know until it happens and I can't say whether I'm ready or not until I get the call.
To prepare myself in anyway I could, I got my 'transplant bag' ready yesterday, it needed to include quite a lot of things so I bought a nice new, floral bag and got the majority of the stuff from Tesco, so now I have all the bits and pieces for when the call comes, that helped my mind a bit because now I feel properly prepared, I just need to get my brain ready which sort of happened a little bit today when I had my lung function checked for the first time since before my 3 lung collapses, it was tested in January and it was 24% then today it was 12% highest, I had lower readings and that was my best :/ I think that completely cemented in my brain that I need new lungs because I can't keep living off 12% lung capacity, it's no wonder I've been extremely unwell lately, I've been struggling more than ever and I wasn't surprised at all that it was low to be honest. It is a little scary but it hasn't changed anything, it's helped me if anything because I now know I NEED lungs!!
In other news, I'm going to the Ipswich Star Press Ball next week, I was the guest of honour last year and it was an absolutely amazing night, I'm very excited to have been invited again. I have a lovely blue dress which I've only worn once (my 21st birthday party) so I'm looking forward to wearing that again. Other than going to Tesco yesterday and the odd hospital appointment, I've barely left the house in the last few weeks, we've had visitors, like my parents and my Nanny and Grandad came round for KFC which was great, but I haven't had a good excuse to dress up and go out, so I have one now! No matter how ill I feel, I will definitely be there, woo. Lemar the singer is performing and I will try my hardest to meet him lol ;)!
That is about all for now, I'm trying to keep my blog more updated but at the moment I don't have a lot to say, hence why this post was a bit all over the place. I kind of feel I have so much going on in my crazy little head, it feels good to get it all out and write it down, to try and make sense of it somehow! I understand my blogs have been a bit up and down lately, it's crazy and I'm definitely I'm on a rollercoaster!
Perhaps I'll never make any sense and I am just officially mad :)...?
Thank you for reading and I hope you are not confused/bored lol!!
xxx
It started with excitement, I came home from Papworth last Wednesday and was called on the way home with the good news that I had been finally listed, it then felt a bit like an anti-climax because I'd waited for that news for so long and I'd been working so hard to get there, it was like I no longer had anything to work towards. Of course I do, I need to maintain my weight and my sugars need to stay as controlled as possible, I need to stay well so if a call comes I can go ahead with the transplant, so I do still have things to work towards, my weight is still not perfect so I am still working really hard on that, it's really important I don't let anything slip and become complacent now I've got there, I need to stay there!
Speaking of my weight, it has increased since being listed. I lost weight recently and I think I was so stressed out about the whole will I won't I get on the list, I was convinced it was all going to come crashing down and I would be told I wasn't eligible for transplant after all the hard work I'd endured. I don't think I realised just how stressed I was, but now looking back it's so obvious, I had got slightly snappy and not just when I was unwell, I barely slept and was an emotional wreck. This all took it's toll on my weight which plummeted from 44.1kgs (2nd April - my transplant assessment at Harefield) to 40.6kgs (30th May - in clinic at Papworth) which was around an 8lb loss all during the time I was 'waiting' to find out if I was going to be listed, it's crazy how your body can react so badly to situations! So there's my tip guys, if you want to lose weight - stress yourself out!! Haha.
Anyway, my appetite has gone through the roof since my stress levels have returned to normal and I've now gained 6lbs since the 30th May I now weigh 43kg. I'm eating so much food all day and night, I'm not sleeping a lot because I'm constantly hungry, a little frustrating but I'm not complaining about wanting to eat, I would love to get higher than 44.3kgs as that is the most I've ever weighed. I'd love to achieve that and that is my new goal, when I put my mind to something I know now I can do it!
Regarding my feelings about being on the list, it's been very strange and hard to adapt to 'list life.' I'm constantly on edge and panic everytime my phone rings, you would think I'd be excited everytime the phone rings because I know how desperately I need a transplant, but it's such a huge operation and the whole thing itself scares me so much, I'm frightened of dying, I don't like pain and I know I will be in pain, I'm always afraid of the unknown and this is absolutely unknown. I can read and read other peoples experiences and their 'tales of transplant' but until I go through it myself I won't know how I will feel, how I will cope or if I will get through it. I've questioned my strength the past week more than I ever have in my life, I don't know if I'm strong enough to get through the procedure, I've been up then down and everywhere in between. I hope it settles down soon, I had a call from a private number just a few days ago and I was almost sick with fear, it wasn't Harefield it was my contract renewal (got a new phone, yaaaay) so I was actually relieved it wasn't the call which is completely not understandable, as you guys all know I've worked my butt off to get on the list, now I'm actually on it, I'm so so so scared I can't even explain it. I don't think anyone will understand unless you are in the situation and are waiting for a transplant, but then again not everyone will! I know I'm extremely unwell and without a transplant I'm not going to be alive much longer, so I know I need it, but that doesn't mean I'm ready or excited about it, even though I ignore the stats and figures you can't help but think about them and think I might not be 'the lucky one,' it might not happen for me, all I can do is wait, keep fighting and keep going! I don't have a choice because I absolutely do not want to die, so no matter how scary transplant is, or how unprepared I feel, I'm going through with it 100% :)
Transplant is the only option now and when the call comes, I will take it all in my stride! I suppose I'd like to think it will be a case of rushing around so much it will just happen and I won't actually have too much time to think about it. I know both my parents, Josh and my Stepdad are coming to wait at Harefield with me so at least I won't be sitting waiting to hear if the transplant is going ahead alone, I always need plenty of distraction because I have severe anxiety so I think it will be good for me to have them all there.
I guess I won't know until it happens and I can't say whether I'm ready or not until I get the call.
To prepare myself in anyway I could, I got my 'transplant bag' ready yesterday, it needed to include quite a lot of things so I bought a nice new, floral bag and got the majority of the stuff from Tesco, so now I have all the bits and pieces for when the call comes, that helped my mind a bit because now I feel properly prepared, I just need to get my brain ready which sort of happened a little bit today when I had my lung function checked for the first time since before my 3 lung collapses, it was tested in January and it was 24% then today it was 12% highest, I had lower readings and that was my best :/ I think that completely cemented in my brain that I need new lungs because I can't keep living off 12% lung capacity, it's no wonder I've been extremely unwell lately, I've been struggling more than ever and I wasn't surprised at all that it was low to be honest. It is a little scary but it hasn't changed anything, it's helped me if anything because I now know I NEED lungs!!
In other news, I'm going to the Ipswich Star Press Ball next week, I was the guest of honour last year and it was an absolutely amazing night, I'm very excited to have been invited again. I have a lovely blue dress which I've only worn once (my 21st birthday party) so I'm looking forward to wearing that again. Other than going to Tesco yesterday and the odd hospital appointment, I've barely left the house in the last few weeks, we've had visitors, like my parents and my Nanny and Grandad came round for KFC which was great, but I haven't had a good excuse to dress up and go out, so I have one now! No matter how ill I feel, I will definitely be there, woo. Lemar the singer is performing and I will try my hardest to meet him lol ;)!
That is about all for now, I'm trying to keep my blog more updated but at the moment I don't have a lot to say, hence why this post was a bit all over the place. I kind of feel I have so much going on in my crazy little head, it feels good to get it all out and write it down, to try and make sense of it somehow! I understand my blogs have been a bit up and down lately, it's crazy and I'm definitely I'm on a rollercoaster!
Perhaps I'll never make any sense and I am just officially mad :)...?
Thank you for reading and I hope you are not confused/bored lol!!
xxx
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 :)
xxx
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
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!
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