+ 433 days

Is this the best day of my life? Not sure - but it's a damn good one.

Today I found out that my haemaglobin was 101 and that is the first time it has been in triple digits in 4+ years (without needing a transfusion).

My last transfusion was on the 15 Jan - so it's been 6 weeks since then, and I am very excited/pleased/delighted/happy.

I did keep wondering at what stage do I celebrate? Over the last 2 blood tests, there was an indication that things were going well - I went from 87 to 94 to 95 - so I suppose at that stage we were just cautiously watching to see if the trend up continued. There is something magical about the number now being over 100 - even though not in the normal range yet (that starts at 115) but I am so aware of how much better I am breathing.

I have been a very lucky post BMT patient but the one thing that was effecting me was that I have been transfusion dependent since having the BMT with transfusions needed every fortnight. I was told that should start changing within 6 months, but it wasn't happening for me, and I was getting to the stage to accept the transfusions every fortnight and understand that was what my outcome was - and really, compared to so many others, it really wasn't that bad.

My biggest issue with the ongoing and regular transfusions was the limitation it put on me to go traveling overseas for any length of time. In 7 weeks I am due to go to Sth America for 5 weeks, and have to admit I was starting to feel very nervous about how that was going to work, and had already spoken with the team about getting 'topped up' before I went.

My husband said I was determined to go - so is it the power of the mind?

Whatever it is, I am so thankful.

Not out of the woods just yet - still some issues with my liver and still on tablets, and they are still trying to investigate the uptake in my marrow with the donor cells (which is very good, but not perfect yet) but in my mind, these are minor compared to where I have come from and what else others are going through.

Ironically, it will get to a stage where I still have to keep going back to the hospital to then get blood removed from my system as my iron levels are way too high. Normal numbers are around 300 - mine are now 6000+ due to the transfusions and the bodys inability to shed additional iron at the rate needed. So after all these years of transfusions, my blood will be taken, but unfortunately not any good for donation.

And now must go and write to my donor to thank him again.