Saturday, 28 February 2015

March, a Dechox and Genetic Research

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. 

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.

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. 

Tuesday, 17 February 2015

February Clinic

On Wednesday I went back to clinic for my three month review - well it was supposed to have been three months since my last visit back in November, but in reality I was back just a week after and have been having my white cell blood count monitored with regular blood tests and adjustments in medication.

The white blood cell thing has been going on since last May when it became too low. With adjustments in my medication I was getting back to normal. Then I was taken off a drug - valganciclovir - which I'd been on for my first year after transplant and it went all awry and went too low again.

When your white cells get too low there is nothing to fight infection with so it can be dangerous, therefore I had more adjustments in my medication. Next thing, just before Christmas they got too high - when they are too high, there is a chance the white cells may start attacking your new organs as they react as though your new organs are an infection in your body, so more adjustments. 

I was thrilled at last week's clinic as they managed to get my blood tests back before I left and the consultant checked my white cell count and at long last it was just where it should be, so that meant no changes in my medication.

We've have also been monitoring my blood pressure closely as the majority of patients with transplanted hearts go on to develop high blood pressure, which is obviously a risk factor for heart disease and strokes. It is usually inevitable that patients require medication for high blood pressure. My blood pressure is gradually getting higher, so I have to arrange to have a twenty four hour monitor with my GP next so they can look what it is doing and decide whether it is time to start new medication. 

My consultant told me that 100% of Papworth heart transplant patients are on medication for high blood pressure after a year, so seeing I am 16 months post transplant now, I've done really well to avoid it so far. I've always known that this would probably happen so I am not surprised, I'm more surprised that I've got this far without needing it! 

We had an enjoyable and sociable clinic because we got to meet some friends old and new at the clinic and then when we went across to the canteen we ended up bumping into one of our transplant friends Jacqui, who just happens to work at Papworth. We'd just finished speaking with Jacqui when we spotted our 'PH' friends, Kathy and Michelle - so it was an enjoyable morning. That's what I love about Papworth! 

I was delighted to be given three months until next clinic this time with just the blood pressure test to organise in the meantime. This was short lived though and when my other blood tests were checked, the team phoned to say I need to have more tests because of my Tacro levels and kidney function, so I'm now back in a month's time. 

Luckily, I feel really well thanks to all the careful monitoring of my transplant team and hopefully it is just a question of maintaining the correct balance of the drug combination I need.

I was in the local news again the other week after a reporter phoned from the Hertfordshire Mercury following Grant Shapps' anouncements that the government is going to put organ donation on more forms such as passport applications and oyster cards. They had read an earlier blog of mine and picked up on it because Grant Shapps is a local MP in Welwyn Garden City, Hertfordshire and it was another great opportunity to get people thinking about organ donation.

We have had Valentine's Day too. Rob and I didn't really celebrate Valentine's Day in my pre illness days, as it is a bit hyped up and paying for flowers and cards can be a bit of a rip off. Now we use any excuse to celebrate and I was lucky, Rob bought me a new Pandora charm - the latest one in support of the British Heart Foundation -  so at least some of the cost went to charity and one we fully support at that.

Talking of the BHF - I'm taking part in their DeChox during March to help raise funds for them. My link for sponsorship is below.

Just returning to Valentine's Day, I cannot let this week go by without mentioning my dear friend Stacie, who has worked tirelessly - although she is poorly - to do everything she can to promote organ donation. She was on ITV's Good Morning Britain, on her local radio and in her local papers. You can check out Stacie's blog with all the links below. Our friend John Fisher supported and enabled Stacie to do this. John runs a transplant charity, 'To Transplant and Beyond', which provides support for anyone touched by transplant and they funded the Valentine's campaign she fronted. Hopefully it has got many people motivated to sign the organ do not register. 

This week's photos are taken on or near London's Westminster Bridge. ©Kathryn Graham

Sunday, 1 February 2015

21 Today!

This week was Rose's 21st birthday. It was a celebration I'd always hoped to see, but when I was first diagnosed when she was only 16, it didn't look very promising that I would ever see it. I couldn't really begin to think as far ahead as five years, but all that changed with my transplant thank goodness and not only did I get to celebrate with her, I was fit and well enough to go into London with all my family to celebrate. 

We enjoyed a great evening seeing a show in the West End - Matilda - that was a surprise for Rose. The following evening we all went to dinner at a restaurant in Borough Market with some family friends - Lisa one of her friends - had flown back from Valencia in Spain as another surprise. We had a fantastic and memorable time. 

For me, her birthday was another special moment, another big milestone and I'm just so grateful that I've been so lucky. Live and celebrate every moment, we cannot take anything for granted...

Happy times!