Update from David
Thanks for your post Kathleen. I hope Ed's transplant was successful. Perhaps there are some early sign of engraftment already.
It's a difficult journey, with so many side effects from the medication and the transplant itself. I found it difficult to enjoy life at that stage, and sometimes I became irritable with my dear wife, who was so loyal, faithful and supportive.
I am at Day 90 today, and doing well. They are talking about reducing my medication and removing my Hickman line within the next couple of weeks.
Over the past couple of months I have been gradually re-gaining my strength and my counts have been improving, but with a few setbacks. I suddenly became neutropenic again for a couple of weeks, but a change in medication resolved that. My blood pressure also shot up, so I had to go back on hypertension medication, but I am gradually getting back off it again.
So be prepared for ups and downs and accept the fact that it will take anywhere between 6 months and 18 months before you can start to say you feel 'normal' again.
Best wishes to all of you, patients and carers, at the different stages of your journey.
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.
Last edited by David T : Thu May 23, 2019 at 04:49 PM.