Since my diagnosis of Pulmonary Hypertension just over 2 years ago it has been a constant battle with staying on top of both illnesses and whenever I get sick it's like what is the cause this time? what do they treat? and there is always disagreements with both teams. When I see my liver surgeon he says all my symptoms are due to the progression of my PH and when I see my PH team they say the underlying cause is my liver. I have no idea what is going on except that I feel like things are not getting better despite the new medication that my PH team has put me on alongside the sidenafil that I am already on.
Earlier this month during my daycase at Hammersmith Hospital the PH nurse specialist came to see me and we talked through things and it was clear to her that I was getting more depressed with my current situation. The main issue being the fact that having a child could kill me and so since my diagnosis they have been trying to drum it into me the importance of not becoming pregnant which has been very difficult for me to accept. It's not that I can't biologically have children it's more the risks of carrying and giving birth to a child is the issue, but due to my liver disease I cannot take any oral contraception which gives me a greater probability of falling pregnant. We also talked through my symptoms and after filling out the same symptoms and quality of life questionnaire that I fill in at every appointment and telling her how I feel on a daily basis she told me that it's due to the progression of my PH so she suggested some lifestyle changes to try and make my life easier and suggested I get a wheelchair to use when I go out and need to walk for long periods of tired so that my heart won't get too pressured from forcing myself when I am already tired and out of breath. She also explained what to expect in the future like what are my wishes if and when the time comes I won't be able to mobilise at all or is very limited, making a will and other unpleasant things like if anything happens to me and I need to be resuscitated do I want to be or not. It's important that while I am still mentally and physically able to do things that I get things in order. She suggested that I be referred to my local hospice and palliative care for further support and guidance which my GP has done since. During the doctors rounds the consultant decided that they increase the dose of my newest medication, ambrisentan in the hope that it will help me symptomatically and slow down the progression. They asked if my liver doctor has any plans of further surgery for me in the future and as I explained to my liver doctors already that with regards to having another transplant I refuse but my liver surgeon suggested a portal vein reconstruction in the hope to improve my PH but I said that if it won't cure or improve my PH dramatically then I would not go ahead it with it as I don't think my body can take any more trauma and putting myself voluntarily in a vulnerable situation when I know from my past that I never come out of any surgery without more complications is just not an option. There has to be greater outcome for me to agree to have anymore surgery done. I think they wanted to know because if they were planning anything surgical then now is the time to start thinking about doing it because my pressures are at the lowest it's ever going to get, no treatment is going to improve them any further so if they were to change it will be that it will get higher from here on out.
Well that's the story far, as for me emotionally, I am a wreck. My life seems to be going more in the wrong direction and all my dreams and hopes for my future feels like are being robbed from me and everyone around me is just getting on and living there lives. I often feel that I am just surviving and existing but not living anymore. My doctors and nurses just keep telling me to enjoy my life while I can but how can I when what makes me happy has been taken away from me or are very difficult to do. Sometimes I feel like it's not my liver or heart that will end up killing me but most probably my depression.
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