Tuesday, 21 February 2012

Transplant Continuing Care Again June 2011

Things seemed to be fairly stable and at the end of June, my next visit to the transplant team loomed close. This was really still hanging over us, but as things were stable, we thought the outcome would probably be that I would be monitored closely again. The same routine happened, a visit to speak to the nurse, height and weight measuring, medication updates and then in to see the consultant. This time it was a different consultant, the previous one had been a locum consultant.

We went through my history again and where we had got to with the current drug increase, plus we discussed the drug side effects and my limitations. I hadn't had any more faints, that was the big plus for me, but I was still limited in how far and how fast I could walk, although my walk test had improved since my previous visit; I had chest pain both on exertion and at rest; I got tired very easily and needed stop and rest frequently; the calves of my legs ached terribly after I had been standing or walking for fifteen minutes and the jaw pain was still quite bad. Plus I was still experiencing nausea and diarrhoea, which had worsened when Sildenafil had been added to my drug cocktail.

The consultant went through my history and he discussed the severity of my PH and how my PH appeared very aggressive. His thinking was the PH had been diagnosed late and on diagnosis was at end stage. He explained gently that when I had been fainting my heart had been giving up and this was of some concern still, he was also concerned that I had had fluid in my heart and the right side was dilated. He also had an x ray or CT scan of my lungs up on his computer screen, which showed how damaged my pulmonary arteries are, which are markedly dilated and scarred. Although my fainting had stabilised for now and my latest echo showed much improvement, he was concerned about my past history and the severity of my PH on diagnosis. He believed my heart had been under a lot of strain and possibly for a long time without treatment, considering my fainting started years ago. There is no way of telling whether my earlier fainting was PH or not, myself, I am totally convinced it was, without any doubt.

He went through some of the statistics again with us on survival rates after transplantation and survival rates for PH. For transplantation it is fifty per cent after five years and for PH it is fifty percent after three years following diagnosis and treatment. He considered that given my late and severe diagnosis and the aggressiveness of my PH that the three year outlook for me may not be that  positive. I was already on end stage treatment and given my drug side effects, may struggle with much further increase if any.

All this considered he felt it was time that I should be admitted back into hospital and have a full assessment for a double lung transplant.

He confirmed our worst thoughts really, although we had tried to be positive about the situation, this scenario had not escaped our thoughts. So another blow and another step on the journey of this illness, another route, another path to go down. All quite scary. It would be so nice to get some good news, but being positive, this was another option for treatment, with the possibility of a better quality of life.

I could not really ask for more care in these circumstances, now under two very specialised teams in a world renowned hospital. Much more than a lot of people get opportunity for.

It was at this point that Rob really began to consider his position at work. What would he want to do if they put me on the transplant list? Would he be happy commuting from Hertfordshire to Canary Warf every day, working a ten/ eleven hour day with a commute of an hour and a half either side and having to give total commitment to his work while we waited for the phone call? Did he really want to work like this and me be at home not feeling that well, only for me to be rushed into hospital in emergency circumstances and then possibly face a long recovery? Precious time that may never be recovered for either of us. I think he made up his mind there and then really, if I go on the transplant list, he was going to stop working and we would have some quality time together while we still can. Time that is free of work commitments and pressures. Time for us and the family together. We did our sums, could we stretch our savings for two years? At least by then he could draw some pension early to help us if we were still not out of the woods.    

We would need to see what the outcome of the assessment would be.

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