Breathing is something we all take for granted as humans as we don't really think about it as it's just a natural process in order for us to survive. However, like everything in life when something is taken away from us or is difficult to do we start to appreciate everything and look at life from a different perspective. Since being diagnosed with pulmonary hypertension and being oxygen dependent now every breath I take is precious as I know the probability of my heart stopping suddenly without any warning or going into acute heart failure is high as proven earlier this year when I suddenly went into acute multi organ failure. Although I have been ill in the past this time was especially scary for me as apart from my very first encephalopathy episode it's the first time I have become acutely ill while being home and going about my everyday life and ending up in ITU, as in the past the only time i've ended up in ITU is after I have come out from surgery or when I've take a turn for the worst whilst still in hospital. Also being faced with the decision whether I would allow them to intubate if need be and to say that I was DNR and see the sadness in my mums face was emotional and so difficult.
Since being home my life has taken another turn and change in lifestyle which I am having to get used to. Over the years with my health deteriorating my independence has slowly being taken away from me which I'm finding very difficult to deal with as I am usually a very independent person. When I agreed to have a transplant for the second time I never imagined my life would go this way, I thought it would be like the first time that it would be the start of my future and I would go onto fulfil my goals and dreams in life, instead I am faced with a terminal illness on top of my liver disease, going to a hospice and no social or work life anymore. Had I known all this would be in my future I would have said no to the second transplant and it could of gone to someone more deserving and who could make the most of their life. I feel like I have failed my donor.
I know this post seems very negative but it's a reflection of how I have been feeling lately. My emotional state has been up and down so much this year but more on the downside. Since going to the hospice I finally found a great counsellor who gets me as well as challenges me and it's been a while since I had someone to talk too as my last counsellor was not great and after 2 years I did not benefit from our sessions. Hopefully in time with her help I can come out of my dark place and see the positives again in my life.
