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My name is Kerry Thorpe and I am 21 years old. I have an illness called Cystic Fibrosis which mainly affects my lungs, but also the digestive system, pancreas, liver, kidneys and various other things.
Fri, Jun 22 2012 12:01 PM
Hello and thank you for deciding to read my blog. My name is Kerry Thorpe, you may or may not know about me, so I'll start this first post by introducing and explaining all about me, my life and why I'm writing this blog.I am a 21 year old girl, living with my fiancé (and carer) Joshua Nelli in Kesgrave, Ipswich. We have two little Pomeranian puppies called Tinkerbell and Milly-Mia.
I have an illness called Cystic Fibrosis which I've had since I was 4 months old, it mainly affects my lungs, but also the digestive system, pancreas, liver, kidneys and various other things, due to this I have Diabetes, Liver disease, Asthma, Osteoporosis and Arthritis. I now have 'end stage' Cystic Fibrosis meaning I need a double-lung transplant to survive, without which I'm not expected to live much longer than a year.
My most current lung function was just 12% meaning I am living and functioning everyday with 12% of a normal persons capacity - to put it into perspective, for my age and height I should be able to hold 3.2 Litres of air, but I actually only have a capacity of around 450mls, which is a little bit more than a can of coke! It's quite a shocking figure and when you look at it that way, it's hard to understand how I'm still here! My illness does affect my day-to-day life a lot more nowadays than I'd like it to, because I've always wanted to be an independant person and I have always said 'I have CF, it does not have me.' But since I've become more unwell, it's slowly taken over the majority of my life - I am on 24 hour oxygen, I require a wheelchair as I cannot walk further than a few metres, I have been on 3 strong IV antibiotics since November (which comes with a whole heap of nasty side effects!) I'm also on a lot of pain relief including slow and fast acting Morphine, alongside pain relief I also take around 40 tablets a day, 2 inhalers, 3 nebulisers and 4/5 injections of Insulin.
The hardest part of being this ill is that I can no longer do normal tasks alone, such as climbing the stairs, washing my hair, I even struggle dressing myself without getting physically exhausted. I'd love to be able to wake up one day and think 'I'm just going to go shopping today' but that isn't possible, because I have to ensure I have enough oxygen to last the day and I have to make sure I am able to do my IV's, also I need to have all medication/pain killers with me wherever I go. Because of this, I don't leave the house too much other than hospital appointments or to visit family, I used to enjoy going out for meals and playing poker but slowly everything is being taken away from me, not just my health, but since Josh became my carer money has been tight, so we make the most of life from the comfort of our house!I refuse to let CF control every aspect of my life though, we have visitors round as often as possible and when I'm having a good day and we can get out, I always make sure we take advantage of it, but I have to be careful not to overdo it, because if I have a busy day it will take me a few days to recover and sometimes this means I end up in hospital for a few weeks (I'm under Papworth hospital because they have a specialist adult CF care unit.) since the start of 2012 I've spent around 9-10 weeks in hospital.
My partner Josh gave up his career as an estate agent in October to become my full-time carer so we were able to move in with each other. We've been engaged since Christmas 2010 and are currently in the process of planning our wedding, when we were first engaged we decided we would put the wedding on hold in the hope that I got a transplant and could then get married afterwards in a healthier state - but now I'm so unwell it's not a guarentee I will get a transplant (50% of people on the waiting list don't get the call in time) and the worst thing that could happen would be for me to pass away before we had the chance to get married. This would be our biggest regret so we've now decided to take the plunge and start planning, even though we don't have enough money to have our ideal wedding, as long as Josh and I are married, it will be perfect.
I have been on the transplant list since the 30th May, but getting on the list was extremely difficult, at times my CF team asked me if I was sure that I wanted to go through it all, or did I want to give up because it was an 'almost impossible' task. You see in October 2010 my lung function was 23% it had slowly been getting worse, despite me having more and more treatments, stronger antibiotics, longer hospital stays and starting over night oxygen, I wasn't getting any better so the 'T bomb' was dropped.. 'Kerry, We think it's time for you to consider transplant!' I will be honest, to begin with I was numb, shocked and confused but most importantly I was so unsure if I wanted a transplant! However, after some deep conversations with Josh and my family, I decided I may as well take the chance, the reason why I had doubts is because transplant is not a cure, it brings its own problems along and is basically swapping one lot of complications for another, which is why some people opt to not go down that route, there are also of course, great risks of death, for example, during the operation, immediately afterwards or from rejection etc. But, if it all goes to plan, I'd get the call and the lungs were perfect, I'd be able to live my life again, I've never been able to work, I had to give up my studies because I wasn't well enough, I have always wanted to travel to various destinations but I'm unable to go abroad so if I get a transplant I'll be off exploring the world as soon as I'm allowed, I also want to be able to do normal things, like take my dogs for walks or go out to a party and dance all night - things that are so simple and meaningless to most people but to me it's all I want, I want to be able to breathe without pain, without restriction, I don't want to be held back by oxygen tubing, I don't want to just exist anymore, but mostly I don't want to spend the rest of my life dying, however long or short it may be. Right now I'm somewhere in between, I'd say I'm living but with very heavy restrictions. Because of this it was a no-brainer, transplant is the only option I have now, there isn't anything else I can be given or offered to improve my health, it's the only thing that will give me a perfectly normal life - so that was my mind firmly made up.
But as I soon learned, getting listed wasn't as simple as I'd hoped. What I didn't realise was, I needed to have a BMI (body mass index) of at least 18 and an average blood sugar below roughly 11%. Well, my BMI was 13.3 meaning I weighed a very unhealthy 5 stone, 2 stone off the ideal mark and my average blood sugar was a staggering 16%. I thought it would never happen for me because trying to gain weight when you are as ill as I am is extremely difficult. As I said I was asked if I wanted give up, but giving up is not and never will be in my vocabulary. So I did everything I could to gain weight, I started with the diabetes control because they tend to go hand in hand, higher sugars = weight loss so once I got my sugars under control my weight increased by almost a stone. However after a while I hit a wall, my weight stabilised, I wasn't losing but I wasn't gaining either. My average sugar was around 10% which was perfect but my weight just wasn't good enough. I then heard about a tablet called Megace, it is used to treat cancer but it has a side effect of increased appetite and weight gain, now when I say increased appetite I mean I started literally eating everything in sight and still never feeling full! This was exactly what I needed, within the first month of starting Megace I gained around 8-9lbs and eventually got my BMI to 18, meaning I was finally in a fit enough state to be listed, weight-wise I was the heaviest I'd ever been in my life and my diabetes control was better than ever! So after a year and a half of extremely hard work, sheer determination and fighting my butt off every single day, I was finally listed on the 30th May. Now each day is a waiting game, hoping for that all important phone call. Of course I can't take my foot off the pedal, now I'm at the correct weight I need to stay there, I need to maintain it, I can't let myself slip because if I do and I get a call for transplant, they could say I'm not fit enough for the operation to go ahead and that would be devestating, so I will continue fighting with every breath in my body, I'm not going to become complacent and content with being this weight, I want to get my BMI even higher and my average sugar even lower, I've come too far to let it all go.
I have had a few setbacks along the way, particularly at the beginning of the year. I had 3 lung collapses in the space of 2 months which almost killed me, my body was extremely weak and my lungs were barely functioning, so to survive 3 collapsed lungs in such a short space of time was pretty much a miracle in itself, but I'm still here!! Now I have the hope and belief of being on the list, because during the time I was waiting to be listed I described it as being in 'limbo,' I was extremely unwell without any light at the end of the tunnel, but now I'm on the transplant list and when I'm having a tough day I can say to myself 'I could get the call today!' Because there is finally hope to cling onto that I really could get new lungs anyday now. I'm extremely scared of the whole thing as is to be expected, it's the unknown more than anything but I don't care what it takes, I know it will be the toughest thing physically, mentally and emotionally that I will ever have to go through but it's something I need to do because dying is not an option for me. They say you never know how strong you are until being strong is your only choice! As I've said but I try to maintain a positive outlook, however I'm not completely detached from reality, I know the risks and I know there are numerous stats and figures that are sometimes hard to ignore but I've come too far now to give up, new lungs is the only way forward, it is my only choice, so I will stay strong. Everyday I wake up, I'm so thankful that I am still alive because every single day is one step closer to my new lungs!! :) I hope you've enjoyed reading and will continue to 'walk in my shoes' and follow my journey hopefully all the way to transplant and beyond it! Also If you aren't on the organ donor register, I hope my blog inspires you to make that decision to become an organ donor, it only takes a couple of minutes to fill the form in and making a decision that really does save lives. Please, be a hero, sign the donor register -
Thank you for reading and if you'd like to contact me, feel free to e-mail me - firstname.lastname@example.org
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