Thank you for all the messages of good luck for the hospital whether it was by text or tweet. I was dreading Wednesday's appointment if I'm honest. It's always good to go to transplant clinic in one way because it'd good to touch base and to see the lovely staff especially the coordinators who are my main point of contact. On the other hand it is a very long and tiring day, from the 1 1/2 plus journey there and back, the inevitable traffic jams we get stuck in, the different tests I have to undergo and the worry of what will be said. I've had some difficult visits at Harefield before when my weight was very poor etc and in the back of my mind I'm always thinking "what am I going to have to face this time? What am I going to have to work at to make things right". My raison d'etre at present is to keep myself going for transplant, so if Harefield say jump I have to say how high.
Fortunately, this visit was probably the best I've had at Harefield. I had my bloods taken as soon as we got there and apart from one test that needs to be rechecked everything was fine. Lung function was almost the same as last time which is in itself amazing to be so steady. Xray and ECG were fine and my weight was slightly up on 6 months ago. Its astounding to think that just over a year ago my weight was such a huge insurmountable problem that led to me being suspended from the transplant list. Back then my weight was 41.9kg now it's 50kg and stable.
The doctors and co-ordiantors were pleased with me and we had a really good chat about how much I'm struggling and how there isnt anything to make a difference to how I feel now. They have assured me that I haven't been forgotten and that as soon as a match comes up for me I'll be called in. It sounds silly but when your waiting at home everyday for a call that never comes, just to be reassured does make you feel safer, it was good to have a really long discussion and tell them exactly how I'm feelingand to know that they are happy that I'm doing all I can to maintain everything at home.
Since my visit I have been absolutely exhausted, some days I've hardly got out of bed as I just feel so tired and worn out. It's really disconcerting to feel even weaker than usual and reminds me just how fragile I am right now. I've been up and down emotionally this week, I don't really know why but I keep reminding myself that it will pass soon.