Hi Clare
I only take the one immunosuppressant now, Prograf (Tacrolimus) started out on this plus Mycophenolate and Prednisilone, for about the first eight years then gradually weaned off Prednisilone as it can contribute to having a Type 2 diabetes and then stopped Mycophenolate due to low white cell count and various 'Herpes" related illnesses, Shingles, Bells Palsy, also had CMV which a lot of patients get post transplant. I too am well looked after by the Transplant team at Imperial College for which I am truly grateful, nothing is too much trouble, visit every 6-8 weeks. Life is good at the moment. Good to hear from a fellow transplant recipient.
Hi TopoGigi, thanks for your message. I take Neoral, Cellcept (Mycophenolate) and Prednisolone and seem to manage fine with them. The main issue for me (and one that I must stress had nothing to do with my transplant as such) was that I too contracted CMV from the donor. As you will know, many people will have had this at some point in their lives without realising, as it feels just like a bad dose of flu, but like you I had not had this virus pre transplant and knew the likelihood of me getting it was high. Five months post transplant I got it! Nobody was worried of course, it just meant having to stay in hospital to receive the IV antivirals. More of a nuisance than anything. The problem with me, however, was after going home I started to feel very strange. Extremely weak and when I went to go upstairs to the bathroom I could not understand why my feet kept hitting the stair instead of standing on top of it. Things progressed rapidly and I was worried I'd had a bad reaction to the medication I had been given. Nobody could u detests daughter what was wrong until my own GP came to my home and tested my knee and elbow reflexes (non existant) and a few strength tests (no strength). She knew immediately that I had got Guillain Barre Syndrome (GBS). This is an autoimmune neurological condition and I had got it because of the CMV. My antibodies, instead of attacking the virus had instead turned on my nerve cells, eati g away at the myelin sheath covering each cell. This meant that my brain was sending signals to my muscles to move, but the message was not getting there. I eventually ended up in hospital, unable to move and not knowing if it would travel to my chest muscles which control my breathing. Altogether I was in hospital for over 4 months.
What I absolutely need to stress here is that CMV does not automatically cause GBS. I was just very unlucky. Many people who get GBS do eventually recover - everyone is different. I was flippantly told by a rather ignorant Dr (who did not know my full case) that I would not walk again. I was devastated and my own consultant had to start to rebuild my confidence from scratch (I made a complaint about the other dr). From that point I was not going to let anyone tell me what I could or couldn't do - how could they know what my future was?!
I left hospital unable to move my legs but thanks to two important people who never let me give up I can now move my legs properly and am able to walk across the room. Things according to the mean Dr I was never going to achieve. I have a cracking wheelchair that I use for work or if I go out, but round the house I just hold onto furniture for support.
This unforeseen rare occurrence was nobodies fault - no blame fell at anyone's door. My transplant consultant was devastated and expressed his sincerest apologies, which made me respect him a thousand times over. We both knew he had nothing to apologise for but his sinceretity really touched me.
Sorry, I have waffled on here, but it wasn't the sort of thing you could cover in a few lines. The important thing to take from this is that I never regret having the transplant.