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May 5, 2016 Latest post:
May 13, 2019
In March of 2000, during a workup to have my gallbladder removed, it was discovered that my liver was enlarged. Follow-up tests led to a diagnosis of Myelofibrosis, a rare disease in which my bone marrow was slowly turning into scar tissue. The only cure for Myelofibrosis is a bone marrow transplant, so my brother and two sisters were tested to see if they were a match for me. As it turned out, they all matched each other perfectly, but I didn’t match any of them!! A trip to Mayo Clinic indicated I was basically symptom free, so a bone marrow transplant wouldn’t be recommended at the time. For several years, I was just monitored and required no treatment. During this time, my spleen took over making red and white blood cells for my bone marrow and eventually became very enlarged...to the point that I became somewhat known for it on the medical circuit! By the summer of 2012, I had become so anemic that I began blood transfusions and was placed on a new drug. As hoped, my spleen shrank, but a side effect of the drug was anemia, so I required regular transfusions about every three months. After a couple years, the transfusions became even more frequent, and I was having some related health issues. In August of last year, we made the decision to visit a doctor at the Nebraska Med Center who had training in bone marrow transplants at Mayo Clinic. At my first visit, he suggested we explore the possibility of a transplant. We hoped that if everything fell into place, this would happen last fall; however, during the screening process which included some pulmonary tests, I ended up hospitalized with Pneumonia. It was discovered that I have a fungal infection in my lungs that required several months of oral meds. I had some real ups and downs for a few months with keeping my hemoglobin level up which resulted in having transfusions once or sometimes twice a week. In the past couple months, a new med was administered which seems to have helped stabilize my condition enough that the doctors are in agreement that we can proceed with the transplant. Because I don’t have a related donor, I was very fortunate to have at least two or three perfect donors identified through Be The Match—what a blessing!!!
Soooooo…I will be admitted to the Med Center next Wednesday,May 4 and will begin four days of chemo on May 5. I will have one day of rest and then will receive my transplant on May 10. I’ve always been an adventure lover, but this is one adventure I would not choose if I didn’t think it would be successful. We’ve been reminded several times that this is not only a risky procedure, but in my case “high risk” due to the fact that my lungs are so compromised. Joe, the girls, our sons-in-law, other family members, my church family and many friends have been so supportive in helping to make decisions and lending listening ears. I don’t take any of this for granted—and I thank God daily for His provision through all of these people.