Initially I was very anxious about the thought of being admitted and treated at a different hospital that I was not at all familiar with and really didn't want to go, but fortunately for me my Hammersmith experience was great. The staff and the quality of service is outstanding. I can't fault them for anything and my PHT consultant is very nice, has a lot of empathy and incredibly supportive. After I had all the tests she came to tell me the results that my pulmonary hypertension is at quite a significant stage and immediate treatment is needed. However, she doesn't suggest that surgery will be such a good option for me but will leave that decision up to my Liver surgeon who knows me best and will be the one to do it if need be. Her suggestion is that she starts me on a new drug called sedenafil which will reduce the pressure around my lungs and heart and will eventually allow me to walk without becoming breathless and tired and hopefully can live my life again and go back to work.
Last week I had another clinic appointment with Prof Heaton again to discuss the results from Hamersmith and he said now that I am on the new drug treatment there isn't an urgency of surgery now and he wants me to be on them for minimum of six months before he makes a decision as to what surgery would be best for me. Although my PHT consultant said that she don't think that surgery would be wise in my case Prof thinks otherwise. He thinks long term surgery will be the best option for me but wants my symptoms to be stabilized first as if he was to do anything surgical now it would be far too risky on my heart.
Since November I have had two major episodes of encephalopathy which required admission. The first being whilst I was in Hammersmith. I woke up with severe jerking especially my head and was slightly confused and the second episode followed my collapse at home. I was not answering my phone so mum came to my flat to check on me only to find tat I had passed out on my kitchen floor. I can't recall how I got there and the doctors think I must of fainted and just fell. That night i was in a lot of pain so mum called the ambulance and when I got to A&E my condition deteriorated with the onset of encephalopathy until I became very confused and couldn't string a sentence together as my speech was very slurry. I was at stage 2 and could not determine what year it was, how to eat and couldn't hold anything. Again they tried to get me transferred to Kings but still no beds. Also during my admission my blood sugars went crazy so was given insulin and started on metformin. When I was discharged I was told that next time I become enceplopathic to go straight to Kings as being such a complicated case they don't want to interfere with my treatment at Kings. However, i explained that the ambulance will only take me to my local hospital so I have no choice unless I risk taking a cab next time.
Since my diagnosis my overall quality of life and emotional
state has yet again gone downhill and I haven’t been able to enjoy all the good
things that I had achieved earlier in the year when things were going great. I
haven’t been able to start my job, my relationship with my boyfriend has
suffered and although I’ve moved into my new flat I haven’t had the opportunity
to become independent again as most of the time I have someone staying with me,
usually my mum, Sydney or Emily in case I have another fainting episode.
To top it all off I feel so upset as my support system is no longer going to be there due to people moving on in their careers and I only trust and talk to certain people so when they leave I will feel lost again and I really don't know how I am going to cope emotionally.
Well I think that's most of it. I will try to update more often next year, but hopefully with more good news.
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