Tuesday, 13 January 2015

A Good Start to January

It's been one of those quiet weeks getting back to some normality after the Christmas and New Year festivities. Rob and Rose went back to work - I remember how hard that used to be after Christmas, with the cold and dark mornings so don't envy anyone who had to do that this week.

For me it's been trying to get back to my exercise regime and back to healthy eating after all the Christmas excesses. I think that's probably the same for many too. I am prone to gaining weight now with being on steroids, so I'm trying hard to stay at least where I am now and tone myself up a little in the process. I also want to keep my new heart and lungs healthy too. I've been getting back into the swing of doing some gentle yoga and making sure I'm doing plenty of walking and keeping active.

I've also been really disciplined and have spent quite a bit of time on my writing: getting more work done on my book and organising myself with ideas for my next writing assignment. On the writing front I was delighted to get another article I've written published in 'My Weekly' magazine. It is about the morning I got my transplant call and explains about Pulmonary Hypertension, the intravenous medication I was on and its symptoms and then about how my transplant has dramatically changed things. There is also a part on the shortage of organ donors and they have published the links to NHSBT, which is brilliant. Hopefully it may inspire readers to sign up to the organ donor register. 

My Weekly - 6/1/15 Issue

It was also back to medical things too. My problems getting the correct dosage for one of my immunosuppressants, Myfenax, is still going on. It's been over six months of chopping and changing every few weeks now, so it's been back to more blood tests and liasing with the Transplant Team.

Weekly drug diet!

On the Friday evening just before we flew out to New York, the Transplant nurse phoned to say my white blood cell count had gone too high - I had been having regular checks because it had been going too low for months. If they are too high, then it causes rejection, so they wanted to increase my dose of Myfenax this time. The problem was I hadn't got the correct tablets to make the new dose and it was Friday evening and I was going away on the Sunday, so it got a bit stressful.

In the end, after a few phone calls the team decided and reassured me it could wait until we got back and that I shouldn't worry - easier said than done! I was also worried because Rob had had a really bad cold that he hadn't quite got over and as we were going to be so far away from home I was worried I may catch that and become unwell too. As we set off for the airport I had a lot of pain in my eye and when I looked, it had filled with blood. So back home again we went, to check it out, and establishing it was likely to be just a burst blood vessel, we set off once more. I think at that point I would have felt relieved if we'd got to the airport and been told, 'Sorry, but you can't go!' All went well after that though, once I got myself anxiously on the plane, it was a trip of a lifetime and another big milestone, so I'm pleased I didn't buckle out.

Following all that, I started my new dose of Myfenax a few days before Christmas, a prescription from the Transplant Team was ready and waiting in the post as soon as I arrived home thankfully, so we are still monitoring very carefully how things are going. With all the regular checks, I have managed to keep well, while all the adjustments have been going on and that is the main thing. 

I'm not very good at giving blood - third time lucky this week!

I was back at the local hospital for my physio check too and this went well, so I have been discharged and just need to keep my daily exercises up for now.

Lastly, we are getting a grip on the wedding planning front - Sarah and Oli's wedding is in June, so only four and a half months to go - this is all really exciting and getting nearer now! 

It has been another very positive week and a great start to January. 

(This week's pictures are views from Brockhole Visitor Centre in Cumbria - taken during the Christmas break. For more on Brockhole and its gardens and grounds visit my gardening blog below.) 

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