Health update

Wow, it's already September and I haven't even posted one post regarding my health yet. However, looking at my drafts folder I have started many but never got round to finishing any hence why I haven't posted anything. Well instead of continuing the drafts I thought I might as well start a fresh new one and just combine everything into one post which I intend to finish and publish tonight.

So where to start?! Well I guess the best place to start is with what has been  the biggest and main issue over the past few months which this time it's not so much my liver but my heart. As you all know I was diagnosed with Pulmonary Hypertension in November 2013 which is secondary to my liver disease caused by my portal vein thrombosis which I developed post hernia repair surgery. After starting drug therapy and having a good effect at the beginning after a few months things started to become static again and towards the end of last year I started to feel that things were getting bad again as I was becoming more breathless again, regular chest pains and feeling of fatigue and dehydrated. According to repeat tests during my day case at Hammersmith hospital earlier this year it showed that things had got worst and I only got 30% on  my lung function so a new plan of action was required as I was not fit for any surgery. They decided to start me on a new drug last November which I would take alongside the current medication i'm already on in the hope that my condition would get better and my symptoms would subside. They said it would take 3 months before I would feel any effects of the new drug and that they would review me again to see how much the medication is helping me. The downside of the new medication is that it often has significant effect on the liver and due to my liver disease they started me on a low dose and I have to get bloods done every month in order to keep track of what damage the meds are having on my LFT's and if they are affected too much then I would not be able to continue on them. Fortunately so far the new meds haven't had a significant effect on my liver but it hasn't seemed to improved my symptoms as I still feel the same and sometimes even worst especially when I was in the Philippines I found the severe humidity did not help my situation and I found that I couldn't do half the things I can usually do when I'm in the UK and wherever we went out especially to the malls my mobility  was compromised a lot and was dependent on the use of a wheelchair. I often felt so much pain in my chest when I was walking anywhere and also all my joints where very painful especially in my feet and legs and sometimes it would even reach my shoulders and back which made mobilising and sleeping virtually impossible or very painful, thankfully i brought enough  supply of pain killers cos if it wasn't for the pain killers I would not have coped. Whilst in the Philippines I missed numerous blood tests and hospital appointments, so since i've been back I've managed to get in touch with  both my heart and liver teams and last Thursday I went to see Prof Heaton at  clinic and luckily he was in that day. He said that he was worried about me during my trip but since he hadn't hear from me he assumed that everything went okay. I explained how I felt when I was there but he said he wasn't surprised because he suspected with my situation that the heat would be too much but was surprised I didn't suffer anything serious or life threatening which he was mainly worried about. Then he went on to explain that most of my issues now are around my heart and lungs and that he is still very adamant to do the surgery on my portal vein  or even another transplant which will hopefully help my pulmonary hypertension but explained that if he was to do it now that 100% I will die during   the surgery or as soon as they give me the aesthetic as my heart is too weak to cope with anesthesia thats why they did not give it to me when I had my endoscopy before I went to Philippines. He said that he wanted me to go see my pulmonary hypertension team to see if they can lower my pressure around my heart so that it will be safe enough to operate in about six months time. He also said that he would respect my decision if when the time comes I don't want to go ahead with the surgery it is up to me as it still comes with huge risks and he can't guarantee no post op complications which I am known for always getting. I think he saw from my face that I wasn't keen on any more surgery as I never have the luck with them.

My PH team at Hammersmith Hospital are amazing too  but my last appointment with them was the most heartbreaking. It felt like someone took my dreams and threw them out the window like it didn't matter and that I should just stop dreaming and face reality that I will never live long, I won't have the family I always wanted and basically just accept that yes this is going to kill me someday and they even mentioned the words palliative care which to me says it all. They wanted me to come in for a few days when I got back from the Philippines but I expressed that I didn't want anymore invasive procedures and would appreciate it if I could see my consultant in outpatients first instead so hopefully within the next few weeks I will get an outpatients appointment and hopefully I get to see my consultant who has just come back from her maternity leave as I need more information on why the other consultant suggested palliative care and is there really nothing more they can do for my heart and lungs without surgery? Also since being back I haven't had the strength to go back to work yet as I still feel very weak, tired all the time and in pain daily. It's killing me not being able to work but I don't want to risk it and let my colleagues down by falling ill on the job. I know that I really should be going into A&E but to be honest as much as possible I want to avoid any admissions so as long as I can cope at home I will.

Sometimes I feel like i'm fighting a losing battle so it's time for me to say enough is enough, my body is tired and I know leave my life in God's hands. I can't complain as I have been truly blessed already to have made it this far, I've survived and beaten many odds but I am fed up of spending time in hospitals being poked and proded all the time and I see it as it's not the length of of your life that matters it's the  quality so before my illnesses completely takeover my whole body I want to enjoy the years I have left. I want to travel, see the beautiful places of the world, spend time with my family and friends and hopefully find true love before my time is up and I can't do that from a hospital bed. So whilst I still have a little strength in me I want to start ticking things off my bucket list and this when it starts.