After our initial meeting with the transplant consultant mid December, things went quiet for some time. We were aware it would take over six weeks to check if there were viable donors. My three children were all tested, and were deemed viable donors. I had tests for my lung function (good) and my heart (moderate valve stenosis, but cardiology said it was ok and just needed monitoring), and completed some dental work that got interrupted by my diagnosis. I had been given a provisional date in March, but as March approached we had heard nothing.
Waiting is one of the challenging things. There can be long gaps between tests and results. It is in the nature of things, and with so many things to be tested it takes a while. Haematology is one of the most complex areas of clinical practice, and there are many factors to consider before key decisions can be made. Nevertheless, waiting can be hard.
Almost to schedule, just before the end of February I was advised a fully matched unrelated donor had been found. Then the NHS app started bleeping. An appointment with the transplant team arrived. Following that appointment a nurse rang to invite me for a bone marrow aspiration. I was then told that a PICC line was to be scheduled, and from then on blood samples, transfusions and any drugs could be administered without more needles.
So, I am waiting for the bone marrow test to be completed which will take about two weeks. If the blasts are not too high, then I can progress directly to transplant. If they are over 10% then probably I will need chemotherapy to reduce them. Fingers and toes are crossed that they have not slipped over 10% in the five months since my previous marrow test.
I’ve checked in with my dentist who will do an examination – dental treatment won’t be viable for a while.
So now we wait, but with a feeling that things are happening. There is a small risk the donor won’t work out, but I understand that others are available. Meanwhile the weekly blood tests and transfusions continue, I try to walk three or four times a week and do other things to keep fit, and avoid high risks of infection.