Easter

It's very nearly Easter and time for a restful few days I hope. Lots of things have been happening during March and since my book launch for 'Life is for the Living'.

I've had a few clinic visits for tests and monitoring this month following my episode with CMV virus at Christmas. It's taken time to get over it and I'm still having my immunosuppression increased and being closely monitored as my doctors want to keep a balance of no rejection levels and no return of the CMV. I'm also being kept on the Valganciclovir drug to stop the CMV returning. My blood pressure has been rising again too - a side effect of the immunosuppression drugs. I've had a new drug Ramipril intoduced - as well as the Amlodipine which I'm already on- to help lower it and so far it seems to be doing the trick. I'm still waiting for blood test results, but if they are ok I'm due back at clinic next month again. It feels reassuring to be checked regularly at the moment and I've just decided to let the doctors do the worrying.

I've been feeling really well despite all this, and the only symptom I'm still experiencing is tiredness. The problem is I don't know if it is a symptom or not, as since Christmas I've been really busy with editing, publishing and launching my book. Mostly though, I've been running around with Ted, our puppy. I think I'd forgotten how much hard work having a puppy is - I was only 21 when I last had a puppy so it's a very long time ago! 

I'm usually up and about with Ted just after 6 in the morning, so it's early starts to the day - sometimes we are out and about in the park very early and I try and walk him twice a day. I think it may be the early starts that make me feel extra tired by the evening, as since I fell ill and even after my transplant I hadn't been getting up much before 7.30am. I'd always seen the  extra lie in as a bonus for not working anymore. So I think the extra tiredness may have come with one very cute cocker spaniel pup. On the plus side Ted is keeping me active and has helped me build my strength back up again since Christmas.

I'm planning a quiet Easter with lots  of fresh air, walking, reading and rest. And talking of reading - fancy a good book to read this Easter? I know a good one - Life is for the Living - look it up on Amazon  - £8.99 for a paperback and £3.99 on Kindle! The link is on the side bar.

Have a very happy and peaceful Easter everyone.

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.

Kath's DECHOX

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. 

Life is Worth the Fight

To transplant and Beyond

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