There were a lot of things that I wanted to write about today.I have some additions to make to my Transplant Wishlist, and to share a lovely day I had last week courtesy of my best friend, but I think they will have to wait till next time now as there are more pressing matters .
Yesterday was my 6 monthly check up at Harefield, which involved a very long day and lots of tests. Despite being on the list for 14 months I have somehow managed to miss out on meeting the head transplant doctor (Dr C) until yesterdays visit. He seemed a very nice man and someone who is very fair and personable, I think that I would feel very safe under his guidance and get on well with him.
However yesterday he had to tell me some pretty harsh informaion which I'm still finding very hard to deal with today. Basically, my weight has declined slowly again and I desperately need to put on some weight soon or I will be removed from the active transplant list.
The Dr laid it on the line to me. In his words, at my current weight, "I am seriously increasing my chances of not surviving the post operative period". In order to survive such huge surgery and the possible complications in ICU I need to be a much higher weight than i am now, and give myself (and him) a chance to get me through it. Thankfully, he has NOT removed me from the list at this time(something I am unspeakably grateful for), but wants me to let them know if there is any change in my weight status. I am on very thin ice. As I left the consultation room I began to cry and have been on and off ever since. I'm not in any way blaming him for expressing the facts so plainly, it is his duty of care to tell me the facts and severity of the situation. It is unbelievably hard to cope with though. For my whole life, keeping well has always been my top most priority, I can count on one hand the times over my 21 years when I have missed physio or tablets. 90% of my day is dedicated to tretments, etc. At this time especially, my reason to get up each day is to keep well until my transplant, I cannot begin to describe how much it means to me. The numbers of my lung function speak for themselves, I am in dire need of those lungs to come very soon.
I know many people would think "thats simple, just eat more" or list fatty foods or supplements to gain weight, you would be forgiven for doing so. However, you have to know my situation to fully understand it. For many many years I had problems with my tummy and have always had trouble putting on weight right from the word go. I would be vomiting well over 15 times a day, Every Single Day. After years of testing I am now on a cocktail of drugs which help a lot, but eating is still very difficult for me as I get full extremely quickly, and many rich,fatty foods make me sick or ill. My stomach dr is fantastic but with the best will in the world, he cannot provide drugs that aren't available, (there were several tablets that made a huge improvement but they were removed from the market as "too high risk"). Overnight feeding may be an option but for various personal reasons, I dont think this would be a viable answer for me. I know it sounds as though I am being intentionally difficult and awkward but I am the one who has had to deal with my stomach problems on a daily basis and after all these years, I know better than anyone what would help me to gain weight and what would simply cause more problems.Therefore typical weight gaining tips are not necessarily an option for me, and makes gaining weight nigh on impossible.
I am feeling pretty numb today. Although I knew all the facts, hearing them was one of the hardest things I've ever had to hear. I know that I have been trying as much as posible but I still feel as though I have let myself down in some way. I am determined to improve my weight and hopefully I will get there in the end. My life seems to be breaking down at the moment and as fast as I try to sort one thing something else becomes a problem. I only have to cast my mind around to find people in worse situation to me. It helps to put things in perspective and to count my blessings. In the meantime I will keep on trying my very best with renewed effort and keep you informed of my progress. Sorry for the bad news. xxx