When you are a seriously sick patient, you find that a lot of time is spent having to be patient and wait for phone calls about blood tests, appointments and admission into hospital. Obviously to you these things are the most important things going on in your life, but to a busy medical profession they are only a matter of daily routine and an every day, even every minute occurrence. You find yourself getting impatient, wondering when the phone is going to ring or when the letter may drop through the letter box.While we waited for this, we took another short break in our cottage in the Lake District and I managed quite well, home from home, usual routines with medication and coping with the side effects and some nice visits out in afternoon. We were still blessed with gorgeous weather. I was also in touch with other PH patients that I had met through the PHA forum, which helped a great deal.
After what felt like a long wait, but in reality probably not that long, I was admitted back into hospital at the end of May to try the Sildenafil again. Rob had just completed his three months career break looking after me and was given a new role with his company. As luck would have it, on the first day of this new job I was admitted back into hospital! Sarah took me in that day and when I got there and settled in, I was lucky enough to meet two members of the PHA forum, one girl was in the bed next to me and the other girl was visiting her. We had a long chat together and it was nice to be able to meet them. They had both done lots of fundraising for the PHA and also helped to run the Papworth PH Matters support group and I decided it would be good to try and attend this sometime. The lady in hospital had similar problems to me and was on Epoprostenol and Sildenafil like me, so at six o'clock each evening during our stay, our husbands were busy making up our medications for us.
They started me on a very low dose of Sildenafil to minimise the side effects and I coped with this well. I also explained about weakness in my legs I was experiencing a lot and they looked at my iron levels, which had been low and prescribed a course of iron. I really hoped this would improve my walking ability. They ran some tests and my heart looked much improved on the echocardiogram and my walk test had improved. The consultant still wanted to increase my walking ability and there was talk of increasing Epopostrenol at first, rather than trying Sildenafil. I wasn't very keen on going through 'death by Epopostrenol' as I now called it and was going to fight this one, I would rather walk more slowly than my quality of life dragged down by even stronger side effects of this drug. Fortunately, Sildenafil was the option decided upon, I think with a little ear bending from my specialist PH nurse. Thank you, thank you, thank you!
The Sildenafil was increased slowly over a few days and after five days and tolerating it well, I was allowed home. Normally Sildenafil is given to a patient and if there are no adverse side effects, they are allowed to go home the same day. After all the sickness I had endured, it was decided to keep me in for observation and monitoring just in case. A positive visit this time, but quite stressful for Rob, starting a very demanding new job and having the worry of me in hospital to contend with.
I was now feeling quite pleased and although the drug side effects were heightened again (I don't think the Epopsotrenol really wants to share me with the Sildenafil), at least I had now achieved tolerating most of drugs that had been planned for me back in February. I felt I was stabilising at long last, only more time would tell, but things looked like they were on the up. I thought this would be good news on the transplant front also, I was now on the dual therapy and responding well, so when I went back to see them, which was fairly imminent, they would be pleased and hopefully say too early again, we will see you again in six months!
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