Another blow

I never thought I would be writing something like this again and especially now as this year has been going so well for me so far and I was starting to feel happy and content, something I haven't felt in a long time. The things that have been happening to me this year I never imagined would happen to me at all or at least not for a while and not all in the space of such little time frame. Yes I still suffer with  chronic pain and other symptoms everyday of my life but the main thing is I have been well enough to stay out of hospital since November last year and that is a big achievement for me so I'm not going to complain and instead try to start to enjoy my life and make the most of every day. Also I have made some amazing new friends who have been so supportive and are always there for me no matter what and vice versa so life has actually been great. I'm not saying it's perfect cos I still get my down days and weeks of feeling low but never did I think I would feel this low again. It's like my life has been flipped 180 degrees in a space of a 20 minute appointment.

Thursday I had a follow up appointment with Prof. Heaton my surgeon as he previously discussed with me taking me off the rimfaxamin which I have been taking since November for my encephalopathy and since I have been taking them I haven't had an episode so he suggested that he wants to give me another 3 months and then review me to come off them completely. However within the last 3 months the enceph started to come back in small episodes with the shakes and slurry speech. So when he asked me how I was since my last appointment I told him that the enceph had been coming back in small episodes and then he gave me a list of symptoms asking me if I was experiencing them like shortness of breath, lack of energy, fatigue, pain etc.... and I said yes but I am seeing a respiratory specialist who thinks I may have asthma so I've had some lung function test and an echo.So he went into the system and searched for my test results and said no you don't have asthma but you have a condition called Pulmonary Hypertension (PHT) a rare complication caused from the blockage in my portal vein and the pressure around my heart and lungs are dangerously high causing all the symptoms that I am experiencing and that I am shunting too much blood. At this point I thought to myself great another diagnosis and probably more meds but if it helps my symptoms then I don't care. Then he went on to say that now is the time to think about some intervention as it is only going to get worst so the first port of call is to see the hepatologist Prof. O' Grady and then see a cardiologist who will be able to prescribe me the meds to help with my symptoms and he probably would want to send me to the Brompton as that is what they specialise in. In the meantime he will look over all my previous scans, tests and see if I need any more then to plan treatment which unfortunately will be more surgery. By this stage I felt like information overload and gutted as I didn't expect surgery. His facial expression and tone suddenly changed as he explained to me that he knows that he said earlier this year that he doesn't want to do any more surgery on me when I asked for wound closure because it's clear that every time they go in something goes wrong and I end up critical and he doesn't want to put me in that position again just when I am starting to get my life back. However, this can't go untreated as it will just keep getting worst eventually killing me. So he went on to tell me the two possible solutions. The first tackle the problem by attempting to unblock the portal vein which would be the best outcome. However he said with your insides being so messed up now he can't guarantee that will work without damaging anything else again and the second option is re-transplantation and when I heard that word I was in shock and tried to hold back the tears and carried on listening. He understands that my liver is doing good and it don't make sense on paper that I need another transplant but the only way to cure the PHT is through the liver which caused it in the first place. He has given me a time frame of 3-6 months that this will all happen.

I was just thinking to myself that this can't be happening to me again...I came to my appointment all positive and hoping just to talk things through about the rimfaxamin and to inform him that I have just been diagnosed with type 2 diabetes but that was it and I was in my gym clothes to go straight to the gym. After the appointment I came out the room and saw a friend that I haven't seen in a while talking to Sally the transplant co-ordinator and I went over to say hi and just broke down in tears in the middle of the waiting room. My friend Sydney then text asking where I was and she came up to meet me and usually we have a lot of banter and talk so much but I was just silent and I told her what happened and so she text her boss saying that she wasn't going back to work and we spent the rest of the day together. Mum was speaking to Jackie one of the other transplant co-ordinators and was crying to her. Mum then treated me and Syd to Nandos and then we went off to west end to try and cheer myself up even though I looked like a tramp from crying and wearing gym clothes. We was going to go bowling only to find that they had shut it down so we went to a bar but that was closed down too, the day was just getting worst and I was in pain so we ended up in Planet Hollywood and managed to salvage a bit of the day. I was just really grateful to have Syd there for me, don't what I would have done had she not been there.

Okay I think I've written way too much now so if your still awake at this point I'm sorry for rambling on.