Disappointing News re Transplant

Yesterday I had a phone call from Leicester to tell me that my donor had a medical problem that rules her out as my donor. I am hoping that the problem is not a bad one for her – at least it will have been diagnosed earlier than it might have been. I am very grateful that she was on the donor list and hope she is OK.

We are obviously disappointed. While we were initially shocked by the date we were given, Bob realised that it worked really well for him work-wise and I would have the summer months to recover. We were psyched up for this to go ahead, kitchens notwithstanding!

Leicester have asked for a new search for a donor to be started asap. It might be we are lucky and get someone within maybe 4 to 6 weeks but of course it could be much longer. This has implications for my myeloma levels until we can go ahead.

Today I talked to my consultant and we have decided on a strategy which will have to be flexible, depending on the donor situation. I have had two PAD courses of treatment as described in the last entry – quite hard going too! But the first course has brought my kappa myeloma levels down from 479 to 193 which is a very good drop. We won’t know the second for a week or two as I have only just had the blood test, but hopefully it will continue downwards.

My normal blood test readings are all pretty good – bit borderline anaemic but should be OK soon and platelets, white cells and neutrophils all fine.

I can probably have two more PAD courses – they are very toxic. So as we don’t know how long it will be before my transplant takes place, we don’t want me to have two right now and then find we have a time gap when my levels could rise again. So we are going to play a bit of a waiting game. We will see what my second PAD cycle did to my levels and also may see whether a donor can be found quickly. In three weeks I see my consultant again and we will reassess the situation.

In the meantime I am still reducing my steroid dose – it has been quite a struggle to get through the withdrawal symptoms. I have come down from 160 mg a week to 10mg so far. If I have more PAD cycles it will be back up to a high dose, although maybe not quite so high as last time. I am still very tired after weeks of only having about 3 hours of sleep a night. I am still very puffed up and my ankles are permanently swollen at the moment.

I do need to keep eating as I need to put on weight for the transplant, but the indigestion and bowel issues that brings are not pleasant! I will maybe do that a bit more slowly now, but a note to visitors – I may look more bulgy than I used to!!

We are also considering what to do about the problem of my bone marrow tests. They have been unable to extract any fluid the last two or three times and the core biopsies have not been good either. So getting accurate readings has been impossible. My consultant is going to look into the equipment used (the needle actually bent the last time time!).

So in the meantime I guess at least I will get to see my new kitchen! And we have bought a purple carpet!! Can’t believe we have done that!