Well to say a lot hasn't been going on lately would be an understatement. But I am now officially one step closer to transplant and my 3 day assessment has been booked. It's been a relatively long time coming but I don't think I was really ready up until this point. My last post was called 'everything happens for a reason' and I can tell you I believe in this statement more than ever now. Things keep happening and to me they are so bad almost world ending but it turns out it really was for the best!
So rewind nearly a year ago when Nicki got her call for transplant. I was in hospital myself very very poorly with the flu. I could barely get out of bed so when she called me to say there may be lungs and she was heading to Papworth it was literally one of the worst days of my life. I don't think I could have got there even if I was allowed I was so weak but due to it being a transmittable virus of course I wasn't allowed anywhere near her or the hospital. We always had an idea in our heads of what would happen when the call came and not once did we counter in the fact I may not there with her! It was so hard being miles away and not being there to see her off to theatre or being there when she woke up. But looking back we all agree this did happen for a reason. Had I have witnessed first hand all the tubes and those first hard days post transplant it may have put me off wanting that myself or terrify me more.
But then after my last post just as I was coming around to the idea I had what I thought to be another knock back which I really struggled with. So just after my last post I was admitted to hospital to stay in for ivs and my oxygen was lower than usual and they wanted to try to get on top of it and turn it around if they could. The drug I was given gave me horrible side effects which sent my temperature up to nearly 40 degrees and my heart rate was nearly 150 beats per minute. I was shivering with a fever and it made my muscle problems the worse they had ever been I was in agony. So after no sleep and high on strong painkillers I got a phone call from a transplant co-ordinator saying something flashed up in my blood work as changing from my last set and there was an issue with my antibodies. He was questioning me on whether id had any blood transfusions or pregnancies or major surgeries. Now had I not have been through this process already with Nicki I wouldn't have yet learnt what role anti bodies play in transplant! But my mind went into absolute overdrive. Basically the amount of anti bodies you have affects potential donors for you to be a match with. The higher % they are the less likely you are to match with a % of the population. I was convinced I was done for and mine were so high i'd either be told transplant wasn't an option or i'd be very unlikely to find a match if I went on the list. I spent 6 weeks until my next appointment dreading it and thinking that was it I had no options and it turned out that wasn't the case at all. My anti bodies are 28% now which some people are 0 which is the best it can be but others can be 95% and not get on the list. The doctor is unsure why I was called as they had only changed 1%! So anyway I was quite annoyed about it all but actually again that whole experience made me realised how bloody much I wanted it when my time came. So again that whole scenario proved to me how upset I was thinking it might not be an option for me. Scary stuff!
So yes now I wait. My assessment is 3 days in January and we will see whether I can be listed and whether they feel I am now ready to go active on the waiting list. I did my lung function for the first time in 14 months last week in clinic and my lungs are now only functioning at 28% of what they should be. I hadn't done my blows in so long as I had another pneumothorax and I was so scared of popping my lung again.
I'm finding my life a bit of a waiting game at the moment. So hard to plan anything when you don't know whether you will even be well enough to go on the day but you cant not live your life either. Me and Neil found our perfect wedding venue and decided to book it because life's to short. But, its not until August 2017 as we need time to save and they had no spaces next Summer in the school holidays and we want to get married there. But its so hard because I have no idea where I will be in 18 months time. On the list and plodding on ok? Had the transplant and get to be amazingly healthy and enjoy my wedding day to the full? Still waiting and so sick I would just rather postpone until can enjoy it? Just so hard! Or god forbid the worse case scenario I was listed and ran out of time waiting. I'm feeling positive most of the time but 1 in 3 CF patients die waiting for lung transplant as there are not enough donors. So Please register to be an organ donor and save up to 9 people after you've gone. The most amazing thing anyone can give to another person is the gift of life xx
https://www.organdonation.nhs.uk/register-to-donate/
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