Wednesday, 6 August 2014
Ten Months Post Transplant
The sun feels like it has been shining for ages (probably in more ways than just literally) and I don't think I've ever spent so much time out in the garden enjoying those warm balmy nights.
The feature on my transplant story and seizing the day has now been published in the latest issue of Woman and Home magazine. They are also advertising their reader event 'Seize the Day' on October 29th. I'm really excited about this as I've been asked to be on the panel to talk about my story and making the most of life. Other speakers are Sherrie Hewson from Loose Women and Benidorm fame; Carole Ann Rice, a motivational business and life coach, who is also a best selling author and columnist; Kathleen McGrath, a sleep expert, who set up the Medical Advisory Service, which provides a helpline for insomnia; Linda Bartlett, another reader who completed the 3 Cities Cycle challenge from London to Amsterdam with little cycling experience before training.
The magazine, although on sale now, is the September issue and there is something very apt about that as it is the month of my transplant. I'm looking forward to meeting everybody and enjoying a great evening and yet another experience I never imagined I would have.
Following our trip to Downing St, we spent a lovely afternoon and evening in London, enjoying the sunshine and the vibrant atmosphere along London's Southbank. It was very colourful, busy and lively. I got chance to browse round my favourite bit, the second hand book market and even 'War Horse' put in an appearance down by the National Theatre. It was a lovely end to a hectic week.
Then it was back to my 'other life' - doctors and dentists and hospital appointments for Monday, Tuesday and Wednesday! So back to earth with a big bump. I was back at transplant clinic on Tuesday and everything was looking good. My lung function is still high and my chest x rays were good and clear. It is always a relief to have reassurance that my new heart and lungs are still doing fine.
Apparently when I had all the trouble with my mouth a few weeks ago it was because the myfenax drug had lowered my white blood cells and I had become neutropenic. This is being monitored closely now and although the myfenax was stopped for a week, it was restarted and I have to have my dose reduced now so it doesn't keep happening.
My blood tests were still showing that my white cell count is too low and this makes me even more vulnerable to infection at the moment. I've had to restart another drug again, valganciclovir, for a while just to try and prevent the problems with my mouth recurring again too. I'm having to go back to clinic in a week's time just to have my bloods checked once more and make sure I'm properly back on track and that my white cell count has improved.
I was also given the good news that my PH tests for my stomach all looked normal so I don't need to have the stomach fundoplication operation. That was a huge relief and weight off my mind as I didn't really want to have to have this done so soon after my transplant and when I already have to have some other surgery soon. I've also been back to the local hospital to see the mouth consultant and they are happy to discharge me now.
The transplant consultant explained that if all continues going well I should be able to go onto three monthly visits to clinic soon as long as my medication is settled. I will soon be a year post transplant and there will be a lot of emphasis on taking preventative measures for longer term problems that are very likely to arise such high blood pressure and loss of kidney function.
So ten months on and I'm delighted things are still going really well and I'm still always thrilled and surprised at what I'm managing to do and some of the opportunities that have come my way for some new experiences.
There have been some very special moments during this last month, but it is still those simple basic things that shock me when I realise I am doing them without thinking about it or struggling. Take for instance when we visited Downing St last week. There was quite a group of us going up those famous stairs with all the portraits of the Prime Ministers on the wall. Everyone was a bit in awe of them and admiring them, but all that was really going through my mind was, 'Oh my goodness I'm climbing up the stairs really quickly!'