BMT + 186

So, today is Monday, and I planned all along to post last Thursday as Thursday was + 182 which was 6 months since the BMT. But things last week were so busy with work, my daughter turning 18 and a day trip interstate for work on Friday. So, things last week felt pretty much 'normal' of life before the BMT.

I have had nothing much to say over the last few months, so have not posted. I was hoping for things to change a bit so I could post something exciting, something moving forward.

Life is pretty much back to 'normal'. I do get tired more easily and and have lost even more motivation to get out of bed of a morning (but then I've never been a morning person). My week is made up of work (going in late or finishing up early, so rarely working a full 8 hours) and appointments - hospital or other. This week I have a bone marrow biopsy on Wednesday and clinic on Friday, so back at the hospital twice this week.

So what is happening?

Every 2 weeks I have blood test and every 2 weeks I have been having a blood transfusion. Every 2 weeks I hope that is not going to happen! I was feeling pretty rough in the 2nd week after transfusion as my haem dropped back into the 70's and then pick up again after the blood transfusion, but any postive effects only seemed to last about 3 days then I started feeling out of breath again and very tired. I have a permanent 'headache' which has been with me since the transplant. It is not really an 'ache' but I call it the cicadas singing (at a high pitch). It improves when I get the transfusion, but starts coming back in full force as the levels drop. I wake up with it in the morning, and some days, laying on my pillow in a particular way it actually sounds like footsteps walking down our hallway (pounding in my head). As I get out of breath, the headache is like 2 hammers pounding the inside of my ears in time with my heartbeat.

I have started seeing an acupuncturist to see if they can offer anything, and I have to say since beginning (only been 3 appointments so far) that I do walk out of the appointment without the high pitch screeching in my head and I manage the rest of the day pretty well. By the next morning, the headache is usually back. However, I can also say that at this stage of the 2 week cycle I am feeling much better than I was say 6 - 8 weeks ago. So, a fortnight ago, I was very hopeful that my levels would be high enough to be able to delay the transfusion, but unfortunately they were low again, and today I again hope for better news as feeling OK.

I was told that being transfusion dependent after a major mismatched donor (in terms of blood group) was normal, and that it can take up to 6 months for the blood group to change over. Well, 6 months is here and nothing has changed for me. Last clinic appointment, it was suddenly changed to 6 months or more to change over - so the goal posts got moved! I know today part of my blood test was to test the antibodies to the B blood group in my blood, as I think they are a bit puzzled why nothing much is changing.

My marrow is apparently 99% donor - which is good. My platelets fell back to about 50, but then started coming up slowly but have plateaued at around 72, and not shifted from there. My white cells and neutrophils are on the low side of normal, or just outside it, but much better than where they were for a long time - so I'm happy with that!

So, it is really hard to try and explain what life is like post BMT. It is essentially a new normal with things very similar to before, but a bit slower and the hospital appointments etc worked into a weekly routine.

Anyhow, mainly happy to be alive, to be planning trips again and having taken a couple domestic trips already without any adverse effects. Friday I flew to Brisbane and back in the day (not ideal) and still feeling very tired from that and then a weekend of being out both days. I'm still not good to let myself go to bed in the middle of the day and have a sleep. I normally say I am going to do that, but 'I'll just finish this job first' and then 5 hours and 6 jobs later it's too late to try and have a nanna nap in the middle of the day!

So, nothing more really to say, but as soon as my blood group starts to change or something actually 'happens' I'll post again!