Update from David
Hello again folks,
Thank you for your kind words, and the the encouragement from those of you who have experienced a SCT. I managed to get home on 17th March, and what a huge relief that was. Although I received great treatment throughout the long months in hospital, I was reaching the limits of my endurance and my morale was flagging. A big part of it was not enjoying my food any more because my sense of taste was all messed up and I felt slightly nauseous all the time due to the anti-rejection drug.
I started off on twice weekly outpatients visits for blood tests, a Hickman line dressing change and a consultants appointment. Some of the medication was reduced quite early on, which made me feel much better. Now I am down to one appointment a week, well ahead of schedule. I have experienced some very unpleasant symptoms, which I won't go into, but I am never sure if it is GVHD or the medication, Thankfully they only seem to last for a few days. I was warned about fatigue, but it seemed to pass after a couple of weeks. During that time I sometimes felt extremely cold, no matter how much heat and clothing I used. It turns out that all the energy from the body goes into blood cell regeneration, taking heat away from the rest of the body.
Now my platelets are up to 130 and my Hb is over 100. WBC and neutrophils were doing well but have dropped back a bit, but the doctors don't seem worried.
Most recently I have had to start taking stronger anti-viral drugs because they detected the CMV virus. We all carry it, but when your immune system is fragile and being artificially suppressed it can be very nasty.
So the bottom line is that I am doing well, enjoying my food again and my hair is just starting to grow back. I still consider myself extremely fortunate and savour every day. The past nine months seem like a bad dream and I am tempted to overdo things. Fortunately I have a wife to nag me into following the doctor's advice.
Now that the spring weather is here I am doing a bit of work in the garden, although even there I have to be careful about cuts, scratches, contact with soil and sun exposure. Apparently the chemo takes away your UV resistance and makes to more prone to skin cancer.
If anyone is starting out on the SCT journey, all I can say is that a successful SCT is completely life changing. I don't want to be over optimistic at this early stage, but I really do feel as though I can put the MDS and AML behind me and look to the future again.
David, Age 60, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. No genetic mutations. Developed into AML with FLT3 mutation while waiting for a SCT. Allogenic SCT - MUD in Feb 2019. Relapsed June 2019. Azacitidine, Venetoclax and DLI.