When I arrived at clinic the other week I was greeted at reception then asked if I could sit and wait instead of going off for all my usual rounds of tests. I was advised that someone was going to chat to me about my blood tests. Feeling a little confused I sat and waited and wondered what it all might be about. At first I was worried something was wrong with my last blood tests I'd had at the doctor's that had now come through, then I decided they must have me muddled up with someone else and when 'the person' came to chat to me they would realise they'd got the wrong patient!
Eventually it turned out the PH Research Team wanted a chat about the Genetic Research they are currently undertaking, which I had taken part in at the outset a few years ago. Although I don't have PH, my DNA is still the same constitution so they can still use it and I am able to continue in the research project. They asked if they could take some further blood samples and obviously this could be done alongside the blood samples that were being taken for transplant clinic, hence trying to see me before I wandered off and had my tests done!
The study is planned to include relatives if it determines the need in the future. It includes looking for the presence of known mutations in genes that can cause PAH - which in my case has already been done and fortunately I'm clear - and it also includes looking for other new mutations that may cause it and this is where my DNA will still be useful. PAH patients taking part will go through other regular testing, which will run alongside their usual clinic tests, but as I have been transplanted, I will only have blood tests. There may be a time in the future when my daughters will take part, but only if they wish to. The studies will involve part or whole genome sequencing.
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| No more cakes until April! |
The study is being supported and funded by the British Heart Foundation and this brings me on to March and the Dechox challenge. The Dechox Challenge is being run by the British Heart Foundation so that they can raise funds to enable them to continue supporting vital research such as the 'National Cohort study of Idiopathic and Heritable Pulmonary Arterial Hypertension', which is the study I'm taking part in. They also support research studies into various aspects of heart transplantation too, so as their research could potentially make a massive impact on both mine and my children's future I've decided to take part in the challenge and help to raise some much needed funds.
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| Last chocolate was 5th February! |
The challenge launches on the first of March and I registered to do it a couple of weeks ago just after my clinic. I haven't eaten chocolate since, so my Dechox will go on for over six weeks if I manage to stay the course. I am also going to give up sweets, biscuits, cakes and puddings just for good measure too! If you can help support a good cause, please click on the 'Dechox' link, otherwise wish me luck as the chocolate and cake cupboard is constantly calling and if you know me don't forget how I love Cadbury's Creme Eggs at this time of year!
A little group of us - all involved with heart transplantation - have joined forces so we can motivate each other along the way - click below to see all our stories:
Thanks to everyone who has sponsored us already and please help us raise these much needed funds, any amount, however tiny is welcome!
This week's photos (first two) were taken on a beautiful winter walk around Elterwater in the Lake District.
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