It's only just over 2 weeks into the new year and boy has it already been emotional and heartbreaking. Having to accept that my PH is progressing quite quickly now and the thought of such an uncertain future is hard to deal with. My liver Surgeon is still very adamant on the portal vein reconstruction although it poses huge risks and no guarantees, plus the fact he wants to put me on the ECMO for at least 3 weeks before doing the surgery makes me much more reluctant. Then on the PH side my consultant is not as confident as my liver surgeon as my case is very unique and complicated which they haven't ever come across in this country and even worldwide. My history of complications post surgery be it major or minor is very extensive and i have yet to have any surgery that hasn't resulted in post-operative complications. Therefore it has left me with a big decision whether to take the risk of having surgery in the hope that my PH would be cured but if it goes wrong I could potentially be cutting my life short or spending months in hospital with even more problems.
My PH consultant also discussed what medication options are left for me and said that I am already the highest dose of the safest meds that they can give me without severely affecting my liver. The only other option is to have an IV port access to my heart and having a iv pump the medication through. However, with veins as bad as mine and my history with lines (cannula, picc & central), they never last very long as they either get blocked or infected very quickly and if that happens it could kill me instantly. Also the chances of having encephalopathy episodes are greater with that option and again that could also kill me. In the meantime am hoping that the increase in medication which I started last month will make a difference soon so that I can get out a bit more and it was suggested that I get a oxygen outlet installed at home and have a portable tank to carry with me when i'm out so that I am covered if I get too breathless.
As I sat in the doctors office and listening to all the very limited options I have, I felt numb, deflated angry and sad at the same time. Actually couldn't believe I was hearing such negative things as I felt like again I have lost control over my life and body. Fortunately, for me I have a great consultant who has a lot of empathy, explains things throughly until I understand and is just a very nice and warm person.
Then to top things off we found out that a good friend of my mums passed away recently and I also knew him as him and mum worked together for years and he would also visit me in hospital when I was ill and when I was young he use to tell me such bad jokes to make me laugh and put on silly voices when he rang to speak to mum. He was such a good man, so loving, funny and a dedicated family man. Yesterday was the viewing of his body and so I went with my mum as I wanted to pay my respect and say goodbye too. Looking at him so peaceful was so emotional as I just expect him to come out with his jokes and smile at me. He also died of a pulmonary disease which made it even harder and he knew exactly what I was going through. He was diagnosed a year before me and rapidly declined. At least now he is in God's hands and no longer in pain or suffering as he can breathe easy. Tomorrow is his funeral and cremation so will go with mum. It will be hard as the last time I was at the same crematorium I was saying goodbye to a very good liver friend of mine 4 years ago and am sure will bring all the memories again.
So as you can probably tell it's not been a great start to the year and I don't know what the rest of the year will bring but I still hold on to hope and my faith in God praying for strength, guidance, comfort and a miracle. Where there is life and God, there is hope.
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