Tuesday, 26 April 2011

Reality (Updated)

For those of you who are visiting my blog for the first time, here is a post I wrote a few weeks ago explaining exactly what my life is like nowadays, thank you.

My cystic fibrosis has got to the point where the only option I have to survive, is a risky double-lung transplant. My life is full of medications, treatments, hospitalisations, IV antibiotics, but despite my best efforts, these things can no longer keep me 'stable' and my health is declining at a rapid rate. This time last year, I'd never have imagined I'd be attached to an oxygen tube almost 24 hours a day, I'd have to face using a wheelchair to go out in public and I definitely wouldn't have imagined I'd be facing a life or death decision, which is whether to have a transplant or not.
When you are assessed and listed for transplant, it's because you aren't expected to live much more than an average of two years. That would make me 22 years old. I was told in October, when I was 19, that I needed to be listed for transplant ASAP or I would not be alive much longer. But the problem I face is, I can't even be assessed for transplant until I gain 2 stone and have a healthy BMI, I have already gained 1 stone and I'm working ridiculously hard to get the last stone on. It has been so difficult to gain the weight, so I'm having to have a feeding tube fitted to give me an extra 2000 calories overnight. 
I need to gain the weight because my body has to be as strong as possible to survive such a dangerous operation, but I also need to be weak and ill enough to get on the transplant list, the line is so fine between being too sick and not sick enough.

The last few nights have been extremely difficult. I've sat up until 4-5am because the longer I could put off going to bed, the better. I sit in bed, attached to oxygen, waiting until my body is literally, physically and mentally exhausted, that I have no choice but to fall asleep. I can't lay down because I cough non-stop which makes me breathless and usually results in me being sick. I also can't sleep propped up on pillows because any bit of pressure on my chest makes me unable to breathe, (I also dread when I have to put a bra on because it's like a tight band of pressure around my lungs.) So I sit and wait, sometimes for a very long time, sometimes I have no sleep at all, I'm writing this blog at 4.30am just waiting for my body to give in and let me sleep. I also have to be carried up to bed every night because climbing the stairs is so exhausting, as is getting ready for bed, getting into bed and eventually laying down to sleep. I also can't wash my own hair because it is tiring, I have no choice but to have baths, because standing in the shower trying to wash my hair would be exhausting.

My life has become all about help and relying on other people to do things for me, or to help me do things that most people take for granted, sometimes I wish I could just jump up off the sofa, make myself dinner, quickly nip upstairs to fetch something, have a shower, leave the house without worry, walk or even run, take my puppy for a walk, go out to a party and dance all night long without worrying about coughing, or being out of breath, I know if I go out and have a good time, I will be so ill for days because recovering takes a long time.
I'd love to not have to think about every little thing, I have to think about breathing and if the thing I need to do is important enough, for me to suffer for it.
I wish I could have one day where I could just do normal things and only have to rely on myself.

I've never shared my blog before because I didn't want to burden people with how sick I am, some people don't know there is anything wrong with me, because I have an invisible illness. Others, would never believe just how unwell I have got in a short space of time. Some know exactly what I go through, those closest to me like the amazing family and fiance I am so lucky to have, the people who spend their lives looking after me.

But this is the reality of my life nowadays, this is what it's like living with end-stage cystic fibrosis. This is a term we use when there aren't any other options left and without the kindness of a stranger choosing to donate their organs, we will not survive. I am not alone in this struggle, I have many friends with CF, some are alive, some are dead, some died without receiving their transplant, others got the gift of life, survived and are now living their lives the way those of us needing, or waiting for new lungs, can currently only dream of.

I try to have a positive outlook and mantain a big huge smile on my face, because everyday that I wake up, I'm so thankful that I am still alive.
They say you never know how strong you are, until being strong is your only choice. If I sat and complained every day, or had a negative outlook and didn't even think about what could be, I wouldn't be living, I would be dying.
I know I will get the weight on, I will get on the list, I will get new lungs, I will survive and I won't have to dream or wish anymore, because those dreams will become my reality.

Thank you for reading.


Adam said...

I just read your story in the Evening Star. Your determination and optimism is amazing and just from reading your blog I wholly believe you will make it. You're remarkable! Best wishes to you and your fiance. :)

Adam said...

P.S. I'm an organ donar but after reading your blog I'm going to convince as many as my friends to do so as well!

Kerry82 said...

Hi Kerry, I know exactly how u feel, it was like reading my own thoughts, just wish I could get them down onto paper as well as you. I am on the transplant list, have been waiting for nearly a year now and am constantly under the threat of being suspended from the list for low BMI. I just can't get the weight on past a certain point! My lung function was last measured at 12% so there isn't much time to waste! Its so nice to know that we aren't alone in our struggles and these transplants are happening successfully every week. We just have to stay strong and wait for our turn. Good luck with the weight gain, I look forward to seeing you're on the list soon!
Love Kerry M xx