Friday, 17 February 2012

Yet More Tests and a Big Celebration! April 2011

Before my birthday, I needed to go back for my follow up appointment following my discharge from hospital. This was also timed with some further tests that I had agreed to have to help research for treating and testing PH. I had already been involved with some research when I came to Papworth on my first visit: I agreed to take part in a blood sampling project for PH patients and also I took part in a test which involved blowing into some apparatus, which could give some measures needed to determine the progress of my PH as an alternative to getting them by having right heart catheter procedure.

 This time the tests included a walk test, which is standard in measuring PH symptoms, but as well as walking, I had to blow into a tube linked to a computer beforehand and after I had finished as well. I also had a bike test, where I was wired up to heart monitor, computer and had to blow into a tube while I exercised on the bike. This would also give some accurate information on my PH. I did not perform too well on my walk test, not achieving even three hundred metres, but I still felt so unwell since my last visit to hospital. The bike test was not too good either, I hadn't long eaten lunch with some struggle and the tube in my mouth made me gag because I was nauseous before I even started. The peg on my nose had also been put on in such a way that it really hurt me. All in all I felt a bit stupid as well as unwell, peddling on a bike, all wired up with my shirt unbuttoned, being observed by a doctor, a physiotherapist and my husband with my mouth in a tube and a peg on my nose. To be honest I felt too unwell still to be having to be bothered to do all this, although I did want to help others if I can and on this day that's the only reason I did it.
There is no cure at the moment for PH and it can still only be controlled to a certain extent by drugs, although in the long term the outlook isn't so good, only a three year survival rate for fifty per cent of patients is predicted, from diagnosis and first treatment. PH affects all age groups, genders and race. It is important for me to try and help others in the fight against this disease, especially the children, for whom I hope against hope there will be a cure one day other than transplantation. I will be surprised if a cure will be found in my lifetime, but there is a lot of research and advancements are being made all the time.

Following the tests I saw a doctor. Here it was discussed how poor the tests were and also the problem of my nausea and the need to increase my medication still. It was decided that I would be admitted again in the near future to try again with the oral drug, sildenafil and also to have some tests to measure how I was progressing.

My fiftieth birthday came and I really enjoyed myself, we had planned to go out for some lunch with the girls, but I didn't really feel up to it and I wasn't bothered about this, I was just so pleased to be at home with my family. They made a huge effort, lovely presents, balloons, flowers and Sarah had had a special cake made for me. Really, I felt privileged to still be alive and loved every minute with Rob and our girls. The sun shone, as it had done for a few weeks now and I enjoyed my new summerhouse. We did manage the meal together a few weeks later, which was a lovely occasion again.  

The only thing that really marred my birthday was the fact that my dad was really very poorly again, I had a phone call to say he was back in hospital and again in a terrible state on the eve of my birthday. I had spent months hoping I would stay alive and well myself, looking forward to this day and it hadn't crossed my mind that dad may get worse again, they didn't expect he would live the night. Now the worry was swapped to whether my dad would survive my birthday. Luckily he did, but it was nerve racking each time the phone rang, until we got the call that he had picked up.

Two days after my birthday a visit to meet the Transplant Team back at Papworth was looming.
Happy Fiftieth Birthday, Kathryn!

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