What a rollercoaster the last few days have been. I had the pleasure of meeting my surgeon on Wednesday at transplant clinic. Great man, in the respect that he does actually save lives, with organ donation, yet he does not come across as thinking he is some god, which is a fatal mistake of some doctors in my opinion...
I sat in the waiting room wrapping my oxygen tubing round my fingers, a bag of nerves. After a while one of the co-ordinators came out with my consent forms which she asked me to sign to which I replied "what? Now?!" and I signed.
She came back out and led us through to a room with several people in it, two students that were interested in the field of transplant, the consultant anaesthetist, the surgeon, she took a seat and my parents sat beside me and the room wasn't actually that big! The appointment was over an hour long. The surgeon went over the basics of the procedure, what was important pre transplant, survival rates, post transplant complications. He stressed how important keeping physically mobile was to recovery, survival rates increase by over 50% if your able to do at least something every day, even if its just pottering round the house and next week I'm going to talk to a local physiotherapist and see if I can get access to pulmonary rehab. I got a sense of 'this is going to be no walk in the park, this is big...' and I've never felt like that before. I've focused so long to actually stay alive long enough to make the list I don't think I'd appreciated, fully, what being on the list actually meant.
Survival rates, I knew roughly but to have them directed at you face to face is a bit shocking, on average 50% of double lung transplant (bilateral) patients are alive in 5yrs, for single lungs its slightly less at 46%. Those are averages, no one can say for sure how long a transplant will actually last and they have patients celebrating their 18th, 19th and some 20th years post transplant. Only 10% don't make it through the actual operation and post op period, which when you consider how big the procedure actually is and whats involved that is a good figure. They can't say how long you'll be in hospital because no one can for see what complications there could be, 3wks is the minimum.
There is a whole host of post transplant complications which he went through but the basic things I needed to know we're weight control post transplant is very important, the medication can make you gain weight, they do not have enough data for post lung transplant but they know in heart transplant patients that if the BMI goes over 30 75% do not even make it beyond 2yrs. That, to me, is shocking, it really does make that much of a difference. And antirejection drugs. Without those he explained, you don't breathe, they are the reason you keep breathing post transplant, they come before anything else in your life, even food and drink. You must not miss a single dose, the immune system can be switched back on very quickly and if you miss doses rejection starts to take place almost straight away. I could not ever be imcompliant post transplant, I would feel too guilty on the donor family, the transplant team and my parents and family that are going to see me through this. We then discussed the pros and cons of bilateral then single lung. Basically bilaterals are harder to come by, I am small framed now, the size has to be 100% perfect or the lungs won't fit, I'm 5'4 and a size 6, my donor would have to be my size or smaller, I'm hoping that isn't as difficult as it sounds. Bilateral means the wait will be longer because of the sizing and the fact that sometimes one donor lung is good and another isn't for whatever reason, the operation will be bigger and longer, the recovery will be harder and longer but the survival rates are better. Single means the size doesn't have to be perfect so the wait is shorter, they're easier to come by, the op is shorter so it's easier to recover from but the survival rates aren't as good. On Wednesday he was undecided about which was our best option and said it was up for discussion in a meeting to be held yesterday. The surgeon said he can only advice on what he believed was best and if I came back to them and said it had to be one or the other they would be guided by me, he explained it was my lungs, my op, my call, my life. I'm not used to being able to have so much of a say in things. I talked to alot of online friends that are on the transplant list (thanks to those that listened to me waffle and ask questions!) and waited for some feedback from the meeting. The team decided bilateral was our best option, I'm young for a lung transplant patient at a smaller centre, the survival rates are better and due to the fact I don't have a 100% accurate diagnosis it's a safer option. Blood was taken and when tissue typing and antibody screening is done I will go active on the transplant list, this will take anything from 3-6wks. In the hope that it may shorten my wait for a match I have decided to sign up for the ex vivo/lung reconditioning study. I will talk a bit more about that in my next blog.
Thankyou to everyone that's supported me over the last 12mths, I couldn't have done it without you :-)
Sending some smiles!
4 weeks ago