I had been feeling “off” for a little over a year. I wrote it up to being over weight, and the occasional blood sugar drop. I was going to the doctor for regular checkups, but nothing turned up. There was the issue of not ever being able to do blood work. Because neither the nurse nor the PA could ever get a good stick on me, it was always written up as something that would be done next time.
This past summer, I changed doctors. The new practice had on-site labs, and dedicated phlebotomists. They did the long overdue blood work, and there were some abnormalities that indicated I was slightly anemic. At the time, it wasn’t that big of a deal, but the new doc was through. He sent me to a gastroenterologist for a full workup to look for internal bleeds. After a colonoscopy, endoscopy, and capsule endoscopy, nothing turned up.
After the clean GI exams, the next stop was a hematologist. More blood tests were done, with the only result being a decreasing hemoglobin. Next was a bone marrow biopsy, which showed no signs of any issues, other than it having an extremely low density and that it was not producing red blood cells. Finally, I was referred to specialists at Emory Healthcare.
I had my initial appointment there with Dr. Szabo and did a ton of blood work. After the holidays, I was also scheduled for a CT scan to check my liver. This past Tuesday, I went for the results. While the report from the scan was good, the results from the blood work was not. I had gone from slightly anemic during the summer to severely anemic in December. In fact, it was low enough that they walked me from the appointment directly to hospital admitting.
Over the course of four days, I was given six units of blood, which brought my hemoglobin back to acceptable levels. They had also pulled more blood for labs than I can possibly count and did another, and more extensive bone marrow biopsy, we had an answer as to what was causing everything.
Dr. Szabo and Dr. Bodo gave me a diagnosis of Myelodysplastic Syndrome, which is basically unheard of in someone my age. This blog will chronicle my journey through this process, and maybe connect with other people who are going through a journey of their own.