I'm glad to say that I had a rather uneventful year on Inrebic, in spite of the COVID-19 pandemic that started in the Spring of 2020. Life got incredibly busy with the pandemic and with some physical problems my wife began having just before the pandemic broke. The long and the short of it was that from March of 2019 the demands on my time became intense. On the one hand my wife needed quite a bit of support and on the other, my pastoral ministry demanded more time in unexpected ways.
You might have thought that a pastor would have time to burn during a pandemic when the church was closed down for three or four months. You would be wrong. First there was the learning curve in figuring out how to continue weekly Bible lessons for the church and then learning to make it work. I settled on making YouTube Videos and ultimately found that in addition to my normal sermon preparations, YouTube took me an extra day each week. I have a new appreciation of the many YouTube personalities that make it look so good. My efforts are pretty rough - but they accomplish their purpose.
Dealing with my wife's health issues and my own issues was also a source of stress. Everyone in the medical profession seemed more concerned about COVID than about any other physical issue. The virtual doctor visits cost the patients just as much as an actual visit - but in my opinion they are almost worthless. You get to tell the doctor how you feel - but they cannot take your vitals or listen to your heart and breathing or anything else. They are just guessing about how you are based on what you have told them. I ended up canceling a couple of virtual appointments that I had and I very much felt like my doctors did not much care one way or the other - if they knew at all.
I also went for several months without getting a blood draw because of the pandemic. I knew that the lab would be backed up and that there would be an increased risk for catching COVID at the lab. So I waited until June to get back into monthly blood draws. At that point I found that my platelets were continuing a downward trend. I wasn't happy about it, but I figured (or hoped) that it was because of the Inrebic. By August my platelets were down to the low 80's. I had a virtual appointment scheduled with Dr. Gerds for September, so I started getting ready by checking on my previous appointments where I read his notes. Realized that he was saying I was not interested in a transplant.
When I was intermediate-1 risk I was not interested in a transplant. An SCT is no bargain and I have had a dozen friends die during or after transplants due to the complications. It is not something that you just do for the heck of it. I had hoped that my myelofibrosis would progress slowly enough that I could make it to 75 years of age without a transplant. I figured at that point I would not seek to have a transplant. But I have always said I would definitely try a transplant if I became high risk before I was 70.
So, when I had the appointment with Dr. G. I pressed him about the platelets and he said it was because of my disease - not because of the Inrebic. (RATS). Then I asked him to tell me where I stood and he walked me through the MIPSS70 assessment to show me that I was at High Risk with only a 34% chance of living five years. (I suspect that I am very close to the cut-off between intermediate-2 and High Risk - but I'm close enough that it doesn't really matter.)
To make a long story shorter - Lola and I decided to move ahead with getting me a transplant while the getting was good. It is upsetting in many ways and daunting. But it seems like the only reasonable thing to do, given the progression of the myelofibrosis and my poor prognosis.
Now I just wish we could get it over with.
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