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.
Sending some smiles!
2 months ago