Well maybe the blog is a little bit later than I promised but don't be mad it's a hard one to write or to organise in my brain to coherently explain really, I'm not even sure I can write it now but I'm going to try and attempt to.
Right so on March 29th Papworth had their meeting about me whereby they discussed my entire case everything that's happened and where we are or were or had gotten to at that point, this involved surgeons retired and current, consultants, transplant co-ordinators the whole lot. In that meeting they came to their final decision about whether I should be allowed to have a second transplant or whether it was even possible to do anymore, whether the Aspergillus had gotten to a point where it wouldn't be a danger to me all that lovely stuff. They came to their decision. Now whether rightly or wrongly we had agreed to have a phone-call on the Thursday. One of my original Transplant Co-ordinators rang me, I was in a lovely beer garden in one of my favourite places in Norwich, my co-ordinator really did try and convince me to come in and talk about the results but we know me I just wanted to know the answer. You could totally tell that it was not news he wanted to be telling me. I can't remember exactly what was said although Mark very sensibly recorded it so I can refer back to it should I ever need to or feel the need to depress myself. Ultimately and at the end of the day I was told they had come to the decision that I couldn't be re-listed for transplant.
I am okay with this. I understand the decision entirely:-
- The cavity has gotten bigger which means it is closer to the walls of my lung.
- The aspergillus although better is still there.
- There is NO way to test the aspergillus and see if it is dead or alive.
- There is still the blood flow issues of doing a Double Lung transplant on top of a already transplanted heart.
- There is still the join issues in the lungs whereby they may just collapse.
- The sack around my lungs is stuck to my lungs in reaction to the Aspergillus which is a good thing as of right now as that's what is keeping an aspergillus from getting into me but if they were to transplant they wouldn't be able to take out the lungs without peeling it off and there's a 99% guarantee it would release something into my chest cavity.
- Ultimately they came to the conclusion that if I had a second transplant I would with great certainty die.
All my doctors, surgeons and co-ordnators know me very well and they know the kind of risks I'm willing to take and I'm willing to take some risks let me tell you. I was willing to have the transplant before the whole Aspergillus thing occurred and even then it was a risky thing, I was still willing to do it when the fungi appeared but when they basically say to you "You will die Stacie." it would basically have been suicide. It was by no means a majority decision I had people fighting my corner and who still thought I could do it but at the end of the day a lot of people are influenced by their familiarity of me, they don't want me to die as much as I don't want to and by taking transplant away from me that takes away the potential for me to live a long life. So looking at my case without knowing me at all everyone would say no, they phoned hospitals all over the country and asked fellow consultants and surgeons who all basically said they would not touch me with a barge poll. Using a set of perfectly good lungs on me would be a waste they do need to go to some-one who can give them a chance and unfortunately I just cannot do that. It's sad but that is just the way that it is and I knew that it could go that way.
I think people thought that if this was the way that it was going to go that meant 'this is it, Stacie's going to die' and it does mean I will die but it does not mean I'm going to die NOW. I'm now essentially living with a chronic illness a bit like when I had PH but different. I am stable for now, although I wish we had stabilised me at a better point so I had a little bit of wiggle room the point is I am stable, which means I just have to adapt my life to my new way of living. I feel like the past 9 months has been me waiting for confirmation of how I'm going to live the rest of my life and now I have that confirmation. I haven't asked for any life spans or anything because I just do not need that I don't need a number applied to my life and ultimately they can't give me one anyway it would just be an educated guess that would then rule my life. I know if they said to me "If you can stay stable maybe you'll get a year or 2" I would then hit 2 years and just expect to die and probably start declining and I don't need that.
So this week I have a fair few things to do and get hold of people to see what we can get in my life to make things easier so stair lift potentially, shower options, potentially care options all that type of thing. I guess the idea now is just for me to get out there and live, my life isn't over it still has so much potential and I didn't name my blog frivolously there is a reason because I genuinely believe Life is worth the fight and it still continues to be I'm still fighting for my life, I won't let myself just fizzle out and die.
I will have bad days and there may be more of them but I know I have wonderful people in my life who make them better and make my good days just the most wonderful days. This was never going to be a death sentence for me because I have been chronically ill my entire life transplant just gave me a year off from that and you know what? I am thankful for every second of that year, it may have been like dangling a carrot in front of me but at least I got the experience and I get to appreciate and remember it.
I'm not sure how well this all flows guys but I hope it helps and answers some questions you've been having.
As always, thank-you for reading and chat soon