Thursday, 24 March 2011

Can faith really move mountains?

I wouldn’t call myself a devout religious person, by that I mean I don’t regularly attend church or say grace before a meal (that’s not to say I don’t appreciate things though), but I'm not what you’d call a dutiful follower of God.  I do however though like to believe that there is something else after life as we know it ends an afterlife perhaps or a new chapter or journey, a comer rather than just a full stop. I think though that if most people are honest to themselves everyone likes to believe in something and not necessarily religion, maybe it’s a coping mechanism, a way through the hard times, a chance to momentarily stop thinking about  reality.
The title of this blog; can faith really move mountains stems from an old A’ level paper that I wrote. I based my answer solely on my life experiences to that point. By the time id reached 16 I had fought against a mico-bacterium which was related to the family of the tuberculosis bug. This bug really did some damage it halved my then outstanding  lung function of 110% to 55% and I lost most if not all of the 10 years worth of dance muscle that id built up. That was the first time CF had ever really affected me, I had to do my GCSE mock exams from a hospital bed and I felt like my life had been hit by a freight train. Subsequently after handing in the A’ level essay I was told that I had entirely misunderstood its concept. But I disagreed and to this day still do, you see something got me through that difficult time in my life and although I know medical intervention played a huge part in that I also like to think that self-believe played an equally important part, if not a bigger part. I believed that I could overcome that downward spiral and dance again and go to university, qualify as a dance teacher etc and I did, I did all of that. Would I have recovered so well if I hadn’t believed in myself I'm not sure I would have?
These days things are defiantly not what they were when I was 16, my lung function varies constantly I think the highest it reaches now is 22% or there about, my oxygen saturations (on room air) tend to hang about the 92 to 96% on a good day but on a bad day can be as low as 88% my weights steady. But I'm limited in what I can do, I'm on the transplant list and life health wise is certainly different, but all of that is circumstance beyond my control and I may not be able to change what is happening but I can believe in myself and believe in the fact that yes that call will come and yes I’ll get my life back. So can faith Move Mountains, if you believe in something hard enough if you have faith that something will happen, can you make it happen?  I believe so.  

Monday, 14 March 2011

Life on the Transplant list is a life on hold.

I’ve been on the transplant list now for 2 months and 1 week and if I’m honest I'm still unsure about my exact feelings towards the whole process. By that I don’t mean that I'm unsure about transplant been right for me because I know that it’s what I want to happen, but I’d be lying if I said that there wasn’t the odd day where I sit and just wonder to myself is it all really worth it. ‘Someone has to die in order for me to live’ how does anyone ever really come to terms with that statement? Yet if anything were to happen to me I'm a firm believer in organ donation and my wishes are that any suitable organs can be used for transplant and I signed the organ donor register when I was 16. Can you see the mishmash of emotions that such a predicament leaves you feeling and dealing with?
As for ‘life at the moment’ I feel blessed to be able to say that I still have good days, albeit their far and few between, but I do have them. Take this week for instance my oxygen saturations were 96% on room air, my CRP (infection marker level) had dropped to 7 it had been over 130 and for the first time since last September the number of IV antibiotics that I'm currently taking has been reduced to just one.  I'm not sure how long this will last and have no intention of “holding my breath” so to speak but it’s a release a respite if you like from the endless breathlessness, the relentless IV antibiotics with their sometimes unendurable side effects, but when it all subsides and when things return to “normal”, when I struggle to wash my hair, to cook a meal, to walk the few short steps to my car, when I'm sat willing silently for the phone to ring... It will all hit me again like a tonne of water and I’ll instantly remember how it feels to feel so weak, Ill and unable.
I’ve been asked on a few occasions now how it felt to be told you need a transplant. I remember that day so clearly I can still hear the echo’s of the words... “Sharee, we’ve looked at your x-rays, looked at your rate of decline and we think it’s time we talked about referring you for transplant”. All I can say is it was like I was trapped inside a game of Russian Roulette staring down the barrel of a gun waiting and wondering, not knowing what was going to happen to me next.
I try each and every day to put a positive spin on everything I do, painstakingly paint on the “I'm fine” mask, I have too, it’s the only thing I can do, I have to protect those I love, those I care about. I have to protect myself; I can’t let myself fall apart because I have to be strong enough for whatever happens next.
I'm finding hard at the moment not been able to work, you see the good days don’t last long enough to hold down a full time job plus I'm a qualified dance teacher and id be kidding myself if I thought I could do that right now, but dancing wasn’t just something I did, it was a part of who I am and everyday that I'm waiting for that call to come, another part of who I am disappears. At just 27 I see friends going off travelling, buying houses, having families etc and although none of those things have ever been top of my priority list the fact that I can’t just go and do things really weigh’s on my mind. The realisation of my life compared to that of some of my friends is that I know in no uncertain terms if I don’t get a transplant I will die and until that call comes my life is on hold it’s like I'm just existing not living.

Friday, 4 March 2011

Organ donation & why you should opt to donate

Ive heard so much about organ donation recently, I cant decide if thats because its finally getting the much needed media attention that it so deserves and needs or because now that its such a huge part of my life that coincidently im just paying far more attention to everything I hear, see and read.
Whatever the reason may be it really got me thinking.. I mean about how you could really make someone sit up and take notice, how you could persuade someone through just words to opt in and join the Organ Donor Register and I guess all you can do is put an honest and frank account of your life out their for people to read and think about... below you'll find mine.

Ever sat and wondered what it might feel like not to be able to breathe? ever wondered what its like to wake up in the night soaking wet because your temperature is so high and your choking on your own phlegm? ever wondered what it might be like not to have the energy to wash your own hair, dry your own hair to even get dressed? Ever wondered how it might feel to know that you have to use supplementary oxygen because your oxygen saturations fall dangerously low whilst sleeping? Ever wondered what it may feel like to wake up with a headache so severe you're head feels like its about to explode because you've retained too much carbon dioxide? Ever thought about how it may feel to take a cocktail of tablets every morning and a relentless, never ending amount of intravenous antibiotics some with unendurable side effects just so that you can stay alive?
I dont need to wonder, because I know, I live and breathe the above every single day, and at 26 years of age I was been told in no uncertain terms that my lungs are failing me and now age 27 I know that without a double lung transplant I will die.
Been made to face your own mortality is in my opinion one of, if not the hardest situation to come to terms with. How do you tell your family? How do you tell the ones you care about most? What if they cant cope, what then? How do you tell your mum when you know she's already endured the agony of burying a child?
If your anything like me then you will painstakingly paint on the "im fine" mask, grit your teeth and do whatever you have to do to get through the day. I get through everyday because I realise that dispite everything im actually quite lucky, I've had 27 years of memories and experiences (some people dont get that), I have the use of my legs (albeit I can't manage hills, some days even stairs are hard), I can hear, I can speak and I have a home to go to, food to eat, water to drink. There are people in this world in a far more difficult situation than I am and as crazy as that may sound, knowing just how lucky I am compared to some gets me through.

I joined the organ Donor register on my 16th birthday, and if you've taken the time to read this, then I'd ask you to take the time to think about Organ Donation, to think aboout the difference you could make to somebody. Think about you're own family, your mum, dad, son, daughter. What if it was them, what if they needed a lifesaving transplant. Would you accept one? would you be hoping that someone, somewhere had made that decision to donate their organs after their death so that the special person you love could go on and live their life?

Im not ready to give up, to go.. I have too much left to do, too much left to see and achieve. So im asking you from the bottom of my heart on behalf of myself and the other 10,000 people in the UK who so desperatly need a life saving transplant to think about, to talk about it and to do something about it.
"I am too positive to be doubtful, too optimistic to be fearful and too determined to be defeated"