Nov 26, 2018 Latest post:
Mar 28, 2019
Myelodysplastic Syndrome, Myelofibrosis, and Myleoproliferative Disorder are the difficult to pronounce medical terms to describe Kevin’s condition. In layman's terms… the bone marrow is no longer producing sufficient numbers of red blood cells, white blood cells and platelets. Why the bone marrow is doing that is due to mutations of some of the stem cells that produce blood cells, and scar tissue forming within the bones. There is no stopping the progression of the condition so the only cure is a bone marrow transplant.
The condition probably started many years ago but was not discovered and diagnosed until 2017 after a long and slow decline in white blood cells and red blood cells. Initially it was thought that the anemia was diet related due to iron deficiency, then possibly a B12 vitamin deficiency. The treatment for those deficiencies did not improve the blood counts. It was not until a simple infection became severe and necessitated an eight day hospitalization, three surgeries and massive amounts of antibiotics to stop the infection did the doctors decide there was something else happening that was causing a slow immune response. Every available test was used to rule out possible causes.
Eventually, a Hematologist did several tests and the first of many bone marrow biopsies to see what was happening within the bone marrow. A tentative diagnosis was made.
All the above occurred while living in Ecuador.
Kevin was in the USA when again he became seriously ill and was admitted to a hospital where again, every possible test (except pregnancy) was given and they ruled out all other possible diagnoses and confirming the disease. Kevin’s condition was considered a moderate risk based upon a scale that calculates the risk level of the disease.
Chemotherapy with a drug that targets the bone marrow and temporarily decreases the reproduction rate of the mutant cells was used for 15 months. Every 28 days a cycle would begin and there would be seven separate sessions of chemotherapy over a nine day period. A total of 105 sessions occurred. As the months progressed, so did the disease and the blood counts continued to decrease to about half of a normal adult male. Blood transfusions were used to increase the hemoglobin levels.
While Kevin appeared normal during the process, the condition expressed itself in a significantly decreased energy level. To compare it to a normal person, The symptoms are consistent with a normal person who lives at a low altitude moving to an altitude of 12,000 feet where there is a significant lower level of oxygen. A normal person can function fine at that level with no physical activity but after walking short distances and attempting to do physical labor, the normal person feels physically fatigued, exhausted, and short of breath. Due to Kevin’s low hemoglobin level, He feels those same symptoms at low altitudes.
The low hemoglobin level creates an inconvenience and it is annoying. The greatest danger is the decreased white blood cell levels. White cells are the immune system and a decrease in white blood cells increased the risk of minor infections becoming major or fatal infections. Thus the need for a bone marrow transplant. (The new bone marrow cells will migrate into the bones, set up shop, and begin reproducing more blood cells.)
The transplant itself starts with several days of chemotherapy to destroy 90+ percent of the current bone marrow. A day after receiving the final dose of chemotherapy, the new marrow is infused via an IV, the infusion process takes approximately one hour. The grafting process (migration to the bone marrow and begin reproduction of blood cells) will take several weeks. The month post transplant is the most dangerous due to having almost no immune system.
The Mayo Clinic does its bone marrow transplants as an out-patient procedure (better to stay out of the hospital where all the highly contagious diseases are treated… and spread). Kevin and Veronica (Kevin’s primary care giver) stay at a housing facility (Gift of Life Transplant House) designed to house transplant patients and caregivers. The risk of contracting contagious infections is greatly decreased and staying at the house is more akin to staying in a customized hotel (with kitchens) rather than a hospital room. Phlebotomists from the hospital come to the house to draw blood samples daily so the patients do not have to go to the hospital helping to assure lower risks of contracting an infection. The only time a patient goes to the hospital is for out-patient follow up or when a patient requires continuous hospitalization for significant complications necessitating constant care and monitoring.
Side effects of the chemotherapy, post transplant medications, and the decreased immune system are the most observable, annoying, and challenging. It will take at least three months before Kevin can return home after the transplant, frequent follow up visits to the clinic will continue for another year. How Kevin’s body responds to the all the changes is the unknown variable, The complications and side effects could be minor, or major, especially if there is a graft-versus-host complication. We will know Kevin’s physiological response as the healing process proceeds.