I didn't expect it to be so soon, but I had another transfusion yesterday (Tuesday). This makes the count 67 units of blood. I felt so tired Monday morning that I went home from work at 11am and took a 2 hour nap. I then called the clinic and got in that afternoon, a day early for my blood test and Aranesp shot. My Hgb was down to 9.0 so they got me in for a transfusion on Tuesday instead of Thursday. I felt like my hgb was even lower then and needed a nap this evening as well. It was 12 days since the last transfusion and the running average over last 4 times is now 10 days. As typical over the last couple of months, I made an appt for a transfusion for next week (Thursday) as well.
My other blood counts are normal.
Wednesday, January 24, 2007
Wednesday, January 17, 2007
BMT Planned
Well, I met with my U of MN doctor today and decided to plan the BMT for around May 1st. This will be the best for my family since I will spend the first 3 to 6 weeks in the hospital and then will need to be isolated at home for another 8 to 11 weeks. The first 100 days are the most critical while the new bone marrow takes hold and my immune system is restored. The doctor will contact the BMT Center and we will meet next on March 7.
My Hgb was 10.2 today so I can wait until next week for another blood transfusion. Next week will be wild with a dentist appt as well. I should work a little extra this week to compensate. I am thankful that I feel as good as I do right now and it seems strange that I am going ahead with the BMT. "Walking through the valley of the shadow of death" (Psalm 23:4) is taking on a whole new meaning.
My Hgb was 10.2 today so I can wait until next week for another blood transfusion. Next week will be wild with a dentist appt as well. I should work a little extra this week to compensate. I am thankful that I feel as good as I do right now and it seems strange that I am going ahead with the BMT. "Walking through the valley of the shadow of death" (Psalm 23:4) is taking on a whole new meaning.
Wednesday, January 10, 2007
Transfusion #32
I didn't expect it to be so soon, but I will have another transfusion tomorrow (Thursday). This will make the count 65 units of blood. When I went in for my blood test and Aranesp shot today, my Hgb was down to 9.4. On Monday at Mayo Clinic, it was 10.1 and I did not expect it to drop .6 in two days. I ended up in the same situation as last week where my Hgb could drop below 9 by the weekend. I could not chance making it to next week since Monday is a holiday again (Martin Luther Day). I already had an appointment for a transfusion scheduled for tomorrow; just did not think I would need to use it. I was scheduled for a transfusion last week as well and then did not need it. I cannot predict the next week and cannot guess what my Hgb is going to be when I get it checked. Probably another symptom of my failing bone marrow and time to address the problem with a BMT.
My other blood counts are normal.
My other blood counts are normal.
Monday, January 08, 2007
Mayo Results
Well, it seems like I have been to Mecca. Got back from the Mayo Clinic in Rochester about an hour ago. After driving down this morning for a blood test at 10 am, I met with Dr. Alayew Tefferi about 3:30pm. I actually met with a med student from India for about 45 minutes while she reviewed my case and summarized it for the Dr. I spent only about 10 minutes with the Dr.
In summary, he cut right to the chase, saying that I was seeing him because he was THE expert. He said that I had chronic myeloid disease, a general term to cover all the variations of MPD and MDS. It does not matter what you call it since it eventually all leads to AML, acute myelocytic leukemia, when the bone marrow shuts down and all blood counts drop. Medicines and transfusions can reduce the symptoms but it is just a matter of time, maybe 5 years. He did say that my current marrow was not that critical, with less than 5% blasts (undeveloped cells). He looked me straight in the eye, with his hand on my knee and said "If you were my brother, I would recommend a BMT, sooner rather than later". He said my brother's marrow stem cells were the best option and if I delayed further that they should be harvested and frozen. As I was driving home, listening a classical music station on the radio, I stopped at the Trinity Lone Oak Church in Eagan for a stretch and a short prayer asking God to tell me what to do. Then I got to thinking. What better sign than one of the top (self-acclaimed) experts in the world telling me what he would tell his brother. Time to start planning in earnest.
Interestingly, my Hgb was still up at 10.1 today though still a typical drop of 1 point over the past week. Looks like I can delay a transfusion another week. I still need to go in for a Aranesp shot this week. Maybe that stuff is working though I am still working the chocolate milk theory.
In summary, he cut right to the chase, saying that I was seeing him because he was THE expert. He said that I had chronic myeloid disease, a general term to cover all the variations of MPD and MDS. It does not matter what you call it since it eventually all leads to AML, acute myelocytic leukemia, when the bone marrow shuts down and all blood counts drop. Medicines and transfusions can reduce the symptoms but it is just a matter of time, maybe 5 years. He did say that my current marrow was not that critical, with less than 5% blasts (undeveloped cells). He looked me straight in the eye, with his hand on my knee and said "If you were my brother, I would recommend a BMT, sooner rather than later". He said my brother's marrow stem cells were the best option and if I delayed further that they should be harvested and frozen. As I was driving home, listening a classical music station on the radio, I stopped at the Trinity Lone Oak Church in Eagan for a stretch and a short prayer asking God to tell me what to do. Then I got to thinking. What better sign than one of the top (self-acclaimed) experts in the world telling me what he would tell his brother. Time to start planning in earnest.
Interestingly, my Hgb was still up at 10.1 today though still a typical drop of 1 point over the past week. Looks like I can delay a transfusion another week. I still need to go in for a Aranesp shot this week. Maybe that stuff is working though I am still working the chocolate milk theory.
Tuesday, January 02, 2007
Hgb - Chocolate Theory
Surprise, my hemoglobin was 11.1 today, the highest since last June when it hit 11.5. But at that time, it was after cutting my Anagrelide from 2 pills per day to 1. At that time my platelets also hit a high of 1050 which was not good. Within one week, I was back to 1.5 pills per day to get the platelets back down. I was still on Procrit at that time as well.
So what did I do different in the last week? Was it the eggnog, the turkey or the Aranesp? I had my second Aranesp shot last Tuesday, but then I had a little Hgb rise to 10.2 after Thanksgiving turkey as well. I also drank a gallon of chocolate milk last week and ate many helpings of chocolate candy. Chocolate seems like the best theory to me, so I will go have some more fudge.
Anyway, I do not need a transfusion this week and will be at Mayo Clinic on Monday. BMT decision time is getting closer.
So what did I do different in the last week? Was it the eggnog, the turkey or the Aranesp? I had my second Aranesp shot last Tuesday, but then I had a little Hgb rise to 10.2 after Thanksgiving turkey as well. I also drank a gallon of chocolate milk last week and ate many helpings of chocolate candy. Chocolate seems like the best theory to me, so I will go have some more fudge.
Anyway, I do not need a transfusion this week and will be at Mayo Clinic on Monday. BMT decision time is getting closer.
Monday, January 01, 2007
iWoz vs I AM
I recently read the autobiography of Steve Wozniak titled "iWoz". Steve was the creator of the original Apple computer. You can read my review of the book on my technical blog njerd.blogspot.com
After reading the book, I realized that an autobiography is an "I was" story. Considering my health situation, I have started my own autobiography, not to publish, but as a legacy for my family and future generations. Believe me, it is difficult to do under the circumstances, but something I wish all of my ancestors had done. It is difficult to remember those early years, even the later years. But every time I work some more at it, I cannot help but think of the future. What is in store for me over the next year? Will I survive a BMT? If I do, what torture do I have to endure from GVHD (Graft vs Host Disease)? Why me?
Then I remembered what God told Moses in Exodus 3:14, "I am who I am" and that Moses was to tell the Israelites, "I AM has sent me to you". God says his name is "I AM", not "I WAS". God is the same yesterday, today and forever. I just need to remember that through my belief in His grace that "I am" forever as well. This body is just my earthly home though I would like to live here as long as possible.
After reading the book, I realized that an autobiography is an "I was" story. Considering my health situation, I have started my own autobiography, not to publish, but as a legacy for my family and future generations. Believe me, it is difficult to do under the circumstances, but something I wish all of my ancestors had done. It is difficult to remember those early years, even the later years. But every time I work some more at it, I cannot help but think of the future. What is in store for me over the next year? Will I survive a BMT? If I do, what torture do I have to endure from GVHD (Graft vs Host Disease)? Why me?
Then I remembered what God told Moses in Exodus 3:14, "I am who I am" and that Moses was to tell the Israelites, "I AM has sent me to you". God says his name is "I AM", not "I WAS". God is the same yesterday, today and forever. I just need to remember that through my belief in His grace that "I am" forever as well. This body is just my earthly home though I would like to live here as long as possible.
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