Transplant update (long one!)

Well despite some worries that I may need some IV antibiotics I made it to transplant clinic yesterday. I've never seen so many patients on oxygen in one place, obviously I knew there were going to be patients there in similar positions to me but it made me feel slightly less 'unique'. I over heard some of the conversations, unfortunately I wasn't in the waiting room long enough to actually join in (which is unusual!). A patient opposite me (I had read this article about him some months ago but he looked so well I didn't even know it was him) was telling another patient he received his lung on christmas day 2008, after 11 false alarms! 11!
Not so long after my consultant called us in, we got seated and he began to run through some of the assessment results. Based on the information they have obtained about my lungs he is as sure as he can be that a lung transplant is now our best option. He spoke positively and admitted he was very keen in light of a couple of the results to get me on the lung transplant list as soon as possible. I may have waited a while for the assessment results but that time has given my doctor time to talk to my London team about my results and about what is going on in my lungs in general. The assessment has given them confidence that they're doing the right thing by me. But, there are a couple of buts. A couple of my blood results came back abnormal. One of my clotting factors came back low. If this is low the risk of excessive bleeding during transplant is increased which with such a huge procedure could be a problem. The condition can be genetic but has never been picked up before so I had more blood taken and we're hoping, as is sometimes the case the result was just a bit out. It isn't impossible to transplant with such a condition but the opinion of haematology alot of caution is needed. My consultant reassured me they did a lung transplant on a patient just last week with a more complex clotting condition and the surgeons were able to replace the missing factor during the transplant and the patient continues to do well. Also my creatinine clearance came back high. Creatinine clearance is global kidney function, the higher the level the less efficient the kidneys are at cleaning the blood. Kidney function for transplant is vital, the anti-rejection drugs post transplant can hit the kidneys hard and because of this it isn't unheard of for transplant patients to later need kidney transplants. He advised me poor kidney function can be treated with dialysis but in the transplant recovery period this isn't ideal. Again this has never been a problem for me and no signs of a decline in kidney function have ever been spotted. I had more blood taken to check this as during the assessment when my blood was taken I was nil by mouth waiting to go to theatre for the RHC and was probably dehydrated so we're hoping it was just that. I have to call the co-ordinators Monday and check the results. If this time they're normal my case will be passed to Dr Yonan and I will be offered a place on the list. If they're the same discussions between the surgeons, haematology and the renal team will need to take place and I may need to see both teams for further investigations. Overall my consultant was very positive that at some point I will get on the transplant list, he praised me for my hard work, the amount of hoops I've had to jump through to get where I am and told me I had been through more than enough. This time last year our doctor-patient relationship was none existent so I was a little taken a back by the praise but I'm now thankful my hard work to get where I am and just stay alive is being acknowledged by the right people.

Late night rambles

After the shocker of a bad few days last week, I finally gathered from my lungs it is infact infection. I was happy about this, why? Well because infection is something that can get better and go away, it isn't just my lungs deteriorating, it is infection that is 'fixable'. I'm on lovely big doses of antibiotics at the moment and coughing green gunk with every bit of energy I have but I am getting there. And I managed to fit in an awesome few days away on a spa break last week. It was at times hard work, ok so sitting around in a spa for a few days may not seem like it but I do have less than 15% lung function now, just the sight of a flight of stairs makes my toes curl up. But it was so worth it. It gave me much needed head space to get things into prospective. I looked out over the balcony in the spa and just felt relief, I felt lucky, I felt lucky to be me, to be where I am and to lucky I'm still here.
It amazes me in the face of so much adversity, facing so much uncertainty only then do we really appreciate who are, what we have and in my case what I'm still able to do. And it was then I thought 'if I don't make this transplant list then I was never meant to and I can accept that now'. 12 months ago I didn't even come close to accepting that.
Fact is I've learned to love my life, it may not be perfect but it is my life and it is the best I can make it. Being offered a chance at transplant would be amazing but I think I can accept it now if I don't get the opportunity to go on the list.
Tonight my thoughts turn to Jessica Wales. She's been waiting for new lungs for 4yrs, 4yrs too long.

The machine currently keeping Jessica alive...

The prospect of losing Jessica because she can't hold on any longer for a donor horrifies me, the fact she's held on for 4yrs already horrifies me even more and to think her wait could now well be in vain is just horrible. The fact that I could also be potentially facing this myself, well I think I would need tips on how to cope because I don't know how I would, my mind is yet to even get that far ahead. Nobody deserves to wait that long for an organ donor, someone to give their organs after their death when they're no longer alive and no longer need them. Not difficult really is it? The really sad thing? Jessica is one of many desperate for a transplant tonight, why would you not want some good to come out of the bad? Why would you not want to give someone (or more than one person in many cases) the chance to live after you've died? Would you not want someone to do the same for you? Nobody likes talking about dying but I believe facing upto our fears makes us more human. Think about it, talk about it, do something about it.

It takes alot to scare me now. Having been through what I've been through. Right now I'm scared. My mentality, with transplant in particular has always been 'hold on a bit longer and you'll get there, just a bit longer to the next appointment'. I'm so stubborn that that has not failed me yet. As silly as it may sound, seen as I was given just days to live in a hospice exactly 12mths ago its only recently that I've really realised that its going to take more than my stubborn mind set to keep me alive. And that as much as I desperately want to cling onto life and the chance of a transplant my body might just fail me before that's possible. Right now things are bad, I'm determined I will not fall before this (hopefully) final hurdle. I'm not religious but I talked to a family member recently that is and since then I've been praying, I don't quite know to who or what, just praying. Please keep everything crossed that my clinic appointment on the 22nd goes well.