Tuesday, 14 October 2014

More Promoting Organ Donation

Monday and it was back to transplant life once more, back to blood tests and back to the doctor's again. While we had been in Norfolk, I had had to phone the transplant team a few times about my white cell count, which has been too low. I was advised it was still too low and therefore I still need to stay off one of immunosuppressant drugs, myfenax, until they start to increase. I needed to get another blood test so they can check my full blood count and decide what to do.

Last time this happened, I developed a really sore mouth and it got so painful and sore, I ended up having to go to two emmergency doctors, back to Papworth and then needed to be referred to a maxio/facial consultant, who then needed to see me several times before it was sorted out.

By Monday this was all happening again, so trying to nip it in the bud this time, off I went for an emmergency appointment with the GP. Unfortunately my medication changes have got a bit complex, as I had been taken off valganciclovir too. I was on valganciclovir for about ten months after my transplant and it helps protect against CMV virus. They also put me back on it me when my mouth was sore last time after I had just come off it to see if it would help. It can also affect the white blood cells too, so my GP wanted to consult with the transplant team before he prescribed me anything that may interfere with all the drug changes my consultant has tried to make to increase my white cell count. 

So I in the end I needed to wait for my full blood count results, which weren't ready until Friday. My white cell count was still too low, so I still can't start back on the myfenax yet. By staying off the myfenax my white cells should increase and this will help my mouth problems hopefully. On Tuesday I had to have another blood test for CMV virus and I will get those results next week, so things will be reviewed again then. The week after that all the blood tests need repeating again, so it is an ongoing business for a while.

The GP, I saw was a new one and said I was a brave lady having a heart and lung transplant; I replied to him that it's great my heart and lungs are doing fine and it's been amazing, but it's just a shame the rest of me is falling to bits! We had a good laugh, hopefully all will be sorted soon and settle down. 

Wednesday we had a busy morning as we went into John Henry Newman School in Stevenage to talk to 200 year twelve pupils  (lower sixth form) about organ donation and pulmonary hypertension. Rob and I had put a slide show together and had got leaflets and goodies from NHSBT to give out. The talk went really well and quite a few of them signed up straight away to the organ donation register and there was lots of discussion, so we felt it had been a success.

I then did an interview with Bob FM Herts and Home Counties radio speaking about my first year post transplant, my illness and our visit to the school. Following our personal celebrations last week, we wanted to try and mark my transplant anniversary by trying to promote awareness of both pulmonary hypertension and organ donation.

After the school visit, we have had a request to go back and talk to the year thirteen pupils and have also been asked to visit another school too, so we are going to be busy I think!

The start of my second year post transplant has got off to a good one and the campaign continues on! 

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