False Alarm no. 2

False Alarm no. 2



So there I was just about to settle down and relax with a DVD when the phone starts to ring. I answered and instantly heard the familiar sound of the Transplant coordinators voice, she asked how I was and I knew when I looked at my watch and realised it was 10pm on a Saturday night, that this wasn’t just a social call. I was right. “We’ve got some potential lungs for you” she said. So off I went to the Freeman hospital, Newcastle.


I didn’t seem to be waiting around as long this time, things moved much quicker, I had all my tests done, bloods, x-ray, ECG, blood pressure, oxygen SATS. They all came back fine and I was then told that the tissue typing was also fine.


That’s when it all got a little bizarre...


The coordinator said to me that the blood gasses that had been completed on the donor lungs were good and they were now going to physically inspect them and at this point she had to make me aware that these lungs were in fact from a donor who had smoked. She explained that the reason she had to tell me this was because of new consent which is currently been put into place due to stories such as this one http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.telegraph.co.uk%2Fhealth%2Fhealthnews%2F7827149%2FTransplant-patient-died-after-being-given-smokers-lungs.html&h=QAQAbDpAb


Of course just because someone smokes doesn’t mean they have donated unusable, bad lungs. The above story was to do with far more complex complications.


However, I was a little taken aback by her sudden announcement for my consent to use smokers lungs as honestly I didn’t want to swap the pair I have now for another pair of damaged failing lungs. I asked for some time to consider my options weigh up the pros and cons. Do I take the chance? Will they work? Time to consider what ifs, what if I say no I don’t consent, but this was my chance and turns out to be my only chance.


But time was a luxury I didn’t have. The decision needed to be made and made quickly. So I decided to bite the bullet and agree to consent. I had every faith that the surgeons involved would not give me unusable, unreliable lungs.


On closer inspection it turned out that the lungs were not suitable, the lower left lobe wasn’t inflating correctly.


So back home it was, to sit and wait for the phone to ring again. Here’s hoping it will be 3rd Time lucky. Please keep the Donor and their family in your thoughts, the lungs were a no, but several lives may still have been saved and without people like this, people like me wont get that second chance.

It’s all in the dress rehearsal

I'm finding it difficult to find the words to describe the events which have unfolded during the last 48 hours.

Take your worst fear, the thing that scares you most in the world then add to that the feelings of uncertainty, hesitation and indecision then balance that with the knowledge of the new lease of life that is literally within your grasp. Then feel the sinking feeling in the bottom of your stomach when it’s all snatched away and the transplant coordinator says to you “were sorry, but despite the lungs been a perfect match and despite you been perfectly fit enough for surgery the lungs are too big”.

That about sums up the whirl wind of the last 48 hours.

It has been a hard-hitting, very long and drawn out process, and if I'm honest when I was sat waiting for the transplant coordinator 99.9% of me wanted so much for her to say yes but 0.01% of me was so scared, so undecided and so mentally unprepared that I also wanted to hear no not this time. I hope that doesn’t sound selfish to anyone who is reading this.

I'm going to go and relax now, try getting some sleep and try to control the persistent, nagging cough which seems to have developed.  

I'm going to leave you with a verse from a song; I listened to it and can very much relate to it.

“Caterpillar in the tree, how you wonder who you’ll be. Can’t go far but you can always dream. Wish you may and wish you might, don’t you worry hold on tight, and I promise you there will come a day, when the butterfly flies away”.

I sit and wonder every day, dream about the future that’s slipping away from me. Wishing I could have back my life, be able to do everyday tasks without feeling exhausted and fatigued. Then I think about it, I smile and I fully believe I will get my transplant, my life back, my wings to fly.

Goodnight x

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.  

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.

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"

Reflections

Ever just sat and stared at your own reflection, looked right into your eyes and asked yourself where is your life going? Why does everything seem so distorted?



I did today. I guess I just feel so stalled or stuck. Like I’m standing still and everything and everyone around me is whizzing past at 100 miles an hour.


I hate the fact that I can’t do my job. I’m so intolerably bored and been a dancer and dance teacher wasn’t just something I did and something I thoroughly enjoyed doing, it was a huge part of who I am or who I was. I feel like I have this colossal emptiness and I don’t know how to fill it, part of me feels like its missing.

I suppose I’m just sick and tired of circumstance. I’ve always been so in control so motivated and now, now it’s like the C.F makes the decisions and I follow suit rather than it been the other way around and it’s the most unpleasant feeling in the world.

The journey begins here, the destination unknown.

Well here we are, I finally got round to creating a blog. Believe it or not (most will lol) its been sat on my laptop half created for over a year now. My reason for not completing it.. I suppose life just got in the way.

I love been busy, having things to occupy my mind with, but recently ive had to slow down and age 27 im currently awaiting a double lung transplant due to end stage Cystic Fibrosis. Dispite this though I am still trying to remain proactive and upbeat. Im enquiring about different online home study courses that I could perhaps complete and im also attending a weekly pilates class with my lovely friend Rachael with whom i've been friends with since middle school. Pilates is great you get the muscle workout without having to break a sweat and you dont get all breathless.

Im not going to call this a diary as such, if i know myself at all then i can honestly say im probabaly incapable of writing with the extreme commitment that a diary requires. So rather than a diary, i'm going to call this a note book where i will write down thoughts, feelings, quotes etc and you can ask any questions you want and I will try and be as honest as i possibly can be although even I have some secrets.

So this journey or next chapter of my life starts here, the destination unknown.

I hope you enjoy sharing it with me.