A study of Time, Trust and Team-building.
Nearly 1 hour north of where I lived, in a standalone Cancer Center apart from the massive Hospital complex, I met with the transplant program’s chief architect and leader. I cannot understate how important this meeting was, because the choices were basically suffering through daily short-term misery forever, or undertaking a risky but often successful procedure complicated by my case of myleofibrosis.
The meeting lasted nearly two hours, as we got to know one another through q&a, bouts of humor, and discussions of case histories.
What I Learned
There are various kinds of bone marrow transplants, some being simple, others being far more complex. According to Medline Plus, there are two basic types:
- Autologous bone marrow transplant — The term auto means self. Stem cells are removed from you before you receive high-dose chemotherapy or radiation treatment. The stem cells are stored in a freezer. After high-dose chemotherapy or radiation treatments, your stems cells are put back in your body to make normal blood cells. This is called a rescue transplant.
- Allogeneic bone marrow transplant — The term allo means other. Stem cells are removed from another person, called a donor. Most times, the donor’s genes must at least partly match your genes. Special tests are done to see if a donor is a good match for you. A brother or sister is most likely to be a good match. Sometimes parents, children, and other relatives are good matches. Donors who are not related to you, yet still match, may be found through national bone marrow registries.
My type is an Allogeneic bone marrow transplant. This gives the Doctor the ability to choose from a world-wide databank of volunteer donors. The doctor looks for a wide range of factors. My direct relatives would only be a 50% match, and the database allows for seeking candidates that are up to 100% matches. In addition, younger blood is always preferred, especially for senior candidates like myself.
The bottom line was that without a bone marrow transplant, I’d have a fairly sketchy life — suffering the side effects of myleofibrosis, an enlarged spleen as it tried to take over blood cleaning duties from my scarred bone marrow, and a future of blood and / or platelet transfusions on a rising scale. With a BMT (bone marrow transplant), I could expect the myleofibrosis to disappear, along with its side effects. I could look forward to a diminished or eventually no need for blood transfusions. I could expect a normal energy level for my age. All of this — eventually — because a transplant is a transplant, and no two people are the same when it comes to reactions, abreactions, or ability to put up with surprises — and pain.
I signed on. There was paperwork, lots of it. Medicare will cover the procedure and hospitalization this requires, but it needs to be applied for as part of a study. Post-hospitalization, there is a heavy drug regime. The copay can initially be near $300, depending on the type and complexity of your BMT (Myelofibrosis candidates require a greater number of drugs initially).
I was told to expect a number of preparatory meetings, a bone marrow biopsy or two, and various information and training sessions. After release from the hospital, I would need 30 days of full-time home care, for cooking, drug administration, cleaning, and helping walking or climbing stairs when this became a possibility.
All this was communicated during the summer of 2021, with a proposed transplant date late in September.
Next stop — the hospital’s head of cardiology. I did, after all, have a pacemaker/defibrillator due to my “heart failure” back in 2016.
This would be no simple scenario for me or the doctors and nurses and aides I would soon come to rely on after admission.