A Brief History
For years, I had been doing platelet pheresis donations. This started when we lived in Delaware and for more 3 years, I did about 5 donations a year at the Blood Bank of Delaware. After moving to the Philadelphia area, it took me a while to get set up to do donations at the Red Cross here. In November of 2000, I did my second or third platelet donation at the Red Cross, after which they told me I couldn't do any more donations until I had gotten my counts checked which I did right away.
For the next 6 months or so, I tried to get information from the Red Cross about what my problem was until they finally said I should go see my doctor. I went to my primary care physician and he said I did have a low platelet count and I should see a hematologist. I finally got to my hematologist (I’ll call him Dr. H) in July of 2001 at which time my hemoglobin (part of the red cell count) was 12.8 which was low normal, my white blood count (WBC) was 1.7 thousand (should be in the range of 4.5 to 10.5), and my platelet count was 103 thousand (should be in the range of 200 to 450).
After that, I saw Dr. H every 4 to 6 weeks for a complete blood count (CBC). My hemoglobin was pretty steady, declining slightly until December of 2003, when it was at 11.9. In that same period, my WBC and platelet count declined steadily, reaching 1.0 and 52 respectively. Between December of 2003 and May of 2004, the counts were at 10.5 (hemoglobin), 1.0 (WBC), and 37 (platelet). During this entire time, I felt fine and was completely symptom free. Dr. H was clearly most concerned about my white blood count because the white blood cells are the ones that fight disease and infection. He told me if I ever had a fever of 100.5 or higher, I should call and maybe get admitted to a hospital because the white blood cells could easily get overwhelmed. For 3 years, I never had to call and had only 2 brief treatments to see if they had any effect (folic acid and vitamin B-12).
He also did a bone marrow biopsy and aspiration in July of 2001 and every summer after that. From the first 3, Dr. H could make no definitive diagnosis, and said his best guess was that I was developing a Myelodysplastic Syndrome (MDS). He also indicated that it was possible that I would spontaneously remit.
In May of 2004, things changed. On May 27, I had my fourth bone marrow biopsy and since the results take 2 or 3 weeks to come in, I set up an appointment with my hematologist to follow up on June 24 (my wife and I were vacationing at the Jersey shore during the week of June 12 – 19). On Memorial Day, May 31, I felt pretty bad and at 11:30 PM, I found I had a fever of 101.5, so I called the hematologist’s office. When the doctor on call discovered that I had no other symptoms than a fever (like coughing, etc.), she said I didn’t need to come in, which was a relief to me.
The next day (Tuesday), I called Dr. H and told him about the fever (it had subsided a bit by morning) and that I was quite sore in my coccyx area. I didn’t think it was from the bone marrow biopsy (which was also in that area) because I could see the puncture and it looked fine. My best guess was that I was bruised following a fall while cleaning up after a wedding. He saw me that day and said he thought I might have an infected pilonidal cyst, so he put me on an antibiotic, sent me to a surgeon, and set me up for another appointment on June 10. On Wednesday, I saw the surgeon who confirmed that I had an infected pilonidal cyst and he drained it, leaving the cyst there. If you want to know a bit more about pilonidal cysts (and be warned, you may not), click on this link for pilonidal cyst .
On Thursday, June 10, I went back to Dr. H, thinking I was getting another CBC (complete blood count) and a check on my infection. What I didn’t expect and got was the results of my bone marrow biopsy which showed that I definitely had MDS and that my blood counts were falling fairly quickly. He told me that I needed a bone marrow transplant in the near future. While I knew somewhere inside that I might get this news, it still hit me pretty hard because I knew that while the bone marrow transplant was my best option, it is a very risky procedure.
Here ends the brief history. I will follow with more details and more recent history in subsequent posts.
For the next 6 months or so, I tried to get information from the Red Cross about what my problem was until they finally said I should go see my doctor. I went to my primary care physician and he said I did have a low platelet count and I should see a hematologist. I finally got to my hematologist (I’ll call him Dr. H) in July of 2001 at which time my hemoglobin (part of the red cell count) was 12.8 which was low normal, my white blood count (WBC) was 1.7 thousand (should be in the range of 4.5 to 10.5), and my platelet count was 103 thousand (should be in the range of 200 to 450).
After that, I saw Dr. H every 4 to 6 weeks for a complete blood count (CBC). My hemoglobin was pretty steady, declining slightly until December of 2003, when it was at 11.9. In that same period, my WBC and platelet count declined steadily, reaching 1.0 and 52 respectively. Between December of 2003 and May of 2004, the counts were at 10.5 (hemoglobin), 1.0 (WBC), and 37 (platelet). During this entire time, I felt fine and was completely symptom free. Dr. H was clearly most concerned about my white blood count because the white blood cells are the ones that fight disease and infection. He told me if I ever had a fever of 100.5 or higher, I should call and maybe get admitted to a hospital because the white blood cells could easily get overwhelmed. For 3 years, I never had to call and had only 2 brief treatments to see if they had any effect (folic acid and vitamin B-12).
He also did a bone marrow biopsy and aspiration in July of 2001 and every summer after that. From the first 3, Dr. H could make no definitive diagnosis, and said his best guess was that I was developing a Myelodysplastic Syndrome (MDS). He also indicated that it was possible that I would spontaneously remit.
In May of 2004, things changed. On May 27, I had my fourth bone marrow biopsy and since the results take 2 or 3 weeks to come in, I set up an appointment with my hematologist to follow up on June 24 (my wife and I were vacationing at the Jersey shore during the week of June 12 – 19). On Memorial Day, May 31, I felt pretty bad and at 11:30 PM, I found I had a fever of 101.5, so I called the hematologist’s office. When the doctor on call discovered that I had no other symptoms than a fever (like coughing, etc.), she said I didn’t need to come in, which was a relief to me.
The next day (Tuesday), I called Dr. H and told him about the fever (it had subsided a bit by morning) and that I was quite sore in my coccyx area. I didn’t think it was from the bone marrow biopsy (which was also in that area) because I could see the puncture and it looked fine. My best guess was that I was bruised following a fall while cleaning up after a wedding. He saw me that day and said he thought I might have an infected pilonidal cyst, so he put me on an antibiotic, sent me to a surgeon, and set me up for another appointment on June 10. On Wednesday, I saw the surgeon who confirmed that I had an infected pilonidal cyst and he drained it, leaving the cyst there. If you want to know a bit more about pilonidal cysts (and be warned, you may not), click on this link for pilonidal cyst .
On Thursday, June 10, I went back to Dr. H, thinking I was getting another CBC (complete blood count) and a check on my infection. What I didn’t expect and got was the results of my bone marrow biopsy which showed that I definitely had MDS and that my blood counts were falling fairly quickly. He told me that I needed a bone marrow transplant in the near future. While I knew somewhere inside that I might get this news, it still hit me pretty hard because I knew that while the bone marrow transplant was my best option, it is a very risky procedure.
Here ends the brief history. I will follow with more details and more recent history in subsequent posts.
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