Just a short post to let you know that I had my 39th transfusion and 79th unit of blood yesterday. My Hgb was 8.9 though I felt like it was lower. I feel more tired these days for the same levels of hgb. It had been 14 days since the last, but the average is still 10.5 days between. White cell count was 4.7 and platelets were 325, both about the same for the last several months. There seems to be a slight long term drop in platelets, but that is what the anagrelide is supposed to do. It could indicate my bone marrow is making less platelets with the same dosage of anagrelide, but nothing alarming. If anything, like the increased frequency of transfusions, it could indicate that my bone marrow is starting to fail. Eventually, all my counts will drop to zero without a BMT.
33 days until hospital checkin. 40 days until BMT.
Wednesday, March 28, 2007
Saturday, March 24, 2007
Things to do
It is just 4 weeks to go before I start my physical tests for the BMT and then another couple more weeks before the actual BMT. But what should I do with this time? I have a lot of things that I have been putting off for years, but now need to be done just in case I don't survive the BMT recovery process. During this time I would like to get up to the Bemidji cabin, possibly over Easter, and then have the COFES conference on April12-15. I won't be doing any traveling for probably a year after the BMT.
We also have a birthday party scheduled for my son (turned 18 yesterday) and my sister (turned 65 today). Also planning a birthday party for my mother-in-law (93) and me (59 on May 9th). I will miss my son's high school graduation at the end of May, but I am very proud of him. He has been accepted and is registered at the U of MN College of Biological Sciences in preparation for medical school. He already has been awarded full scholarships based on his 4.0 grade average and community participation. It will be good to have him around as I recover over the next couple of years.
Anyway, what is on my list? Top priority are a will, a medical directive and power of attorney. Then there are all the secrets about where I have all the money hidden. Actually, since I have managed all the finances, I need to document my use of Quicken, banks accounts, 401k plan, insurances, etc. Also need to complete our income tax forms for last year.
On Friday, I met with my supervisor and the benefits administrator at work. We discussed all the Short Term (STD) and Long Term Disability (LTD) benefits. It appears that I have optimized my STD such that I will have just 3 hours short of 26 weeks. I have worked extra hours to make up for time that I needed for Dr appointments, blood tests and transfusions and was last sick only 3 hrs back in November. Since our STD is a rolling year total, any time I took before November will drop out of the total of 26 weeks which will be over on October 26th. I also accumulate vacation while out on STD so will have that pay to bridge the gap to LTD if I need to. Unfortunately, 14 weeks of STD is at 65% pay and LTD is at 60% pay. I also found out that after the 26 weeks of STD, I will no longer be an employee, but can continue with the same benefits plan if I pay for it directly. I still need to check into taxes on this income as well as Social Security disability. Anyway, plan for the worst case and hope for the best.
Another item that I worked some more on this evening is my life story. The outline and about 10% of rough notes totals 14 pages so far. It is not an easy thing to do, but something I recommend that everyone does. We have some stuff from my mother and diaries that she kept for years, but it would be great to have something similar from my father and other ancestors.
I am also trying to clean out old stuff that may have seemed valuable to me, but certainly not to anyone else. Again, there are a lot of memories and stuff to document. How any one know what is really valuable unless I make some notes?
Just thinking about all this makes me wonder if I am doing the right thing in getting a BMT. But I have to trust the advice of the doctors to move ahead and the power of God to carry me through it.
We also have a birthday party scheduled for my son (turned 18 yesterday) and my sister (turned 65 today). Also planning a birthday party for my mother-in-law (93) and me (59 on May 9th). I will miss my son's high school graduation at the end of May, but I am very proud of him. He has been accepted and is registered at the U of MN College of Biological Sciences in preparation for medical school. He already has been awarded full scholarships based on his 4.0 grade average and community participation. It will be good to have him around as I recover over the next couple of years.
Anyway, what is on my list? Top priority are a will, a medical directive and power of attorney. Then there are all the secrets about where I have all the money hidden. Actually, since I have managed all the finances, I need to document my use of Quicken, banks accounts, 401k plan, insurances, etc. Also need to complete our income tax forms for last year.
On Friday, I met with my supervisor and the benefits administrator at work. We discussed all the Short Term (STD) and Long Term Disability (LTD) benefits. It appears that I have optimized my STD such that I will have just 3 hours short of 26 weeks. I have worked extra hours to make up for time that I needed for Dr appointments, blood tests and transfusions and was last sick only 3 hrs back in November. Since our STD is a rolling year total, any time I took before November will drop out of the total of 26 weeks which will be over on October 26th. I also accumulate vacation while out on STD so will have that pay to bridge the gap to LTD if I need to. Unfortunately, 14 weeks of STD is at 65% pay and LTD is at 60% pay. I also found out that after the 26 weeks of STD, I will no longer be an employee, but can continue with the same benefits plan if I pay for it directly. I still need to check into taxes on this income as well as Social Security disability. Anyway, plan for the worst case and hope for the best.
Another item that I worked some more on this evening is my life story. The outline and about 10% of rough notes totals 14 pages so far. It is not an easy thing to do, but something I recommend that everyone does. We have some stuff from my mother and diaries that she kept for years, but it would be great to have something similar from my father and other ancestors.
I am also trying to clean out old stuff that may have seemed valuable to me, but certainly not to anyone else. Again, there are a lot of memories and stuff to document. How any one know what is really valuable unless I make some notes?
Just thinking about all this makes me wonder if I am doing the right thing in getting a BMT. But I have to trust the advice of the doctors to move ahead and the power of God to carry me through it.
Tuesday, March 20, 2007
Blurry vision
My Hgb was 10.1 today so I will try and make it until next week for my next transfusion. My other counts were normal, but then my eyesight was a little blurred this morning. I didn't notice anything at breakfast reading the newspaper, but when I got to work I had a hard time focusing on my computer screen. I noticed some problems last week as well.
I called and got right into the eye doctor who said she did not find any problems though I was still having problems focusing there. The thought was that maybe my eyes were dry so she gave me some sample eye drops to try. Of course, she dilated my right pupil which really caused blurry vision. Thankfully, it was an overcast day as I drove to get my blood test. I then went back to work and sat in a meeting for an hour. It cleared up OK and did not bother me for the rest of the day. Though my prescription did not change, I will get new glasses through our work optician, safety lenses free and $40 frames. I could spend more, but am not fashion conscious.
I called and got right into the eye doctor who said she did not find any problems though I was still having problems focusing there. The thought was that maybe my eyes were dry so she gave me some sample eye drops to try. Of course, she dilated my right pupil which really caused blurry vision. Thankfully, it was an overcast day as I drove to get my blood test. I then went back to work and sat in a meeting for an hour. It cleared up OK and did not bother me for the rest of the day. Though my prescription did not change, I will get new glasses through our work optician, safety lenses free and $40 frames. I could spend more, but am not fashion conscious.
Monday, March 12, 2007
Transfusion #38
As expected, I will have my 38th transfusion and 77th unit of blood today (Tuesday). I was surprised that my hemoglobin had dropped to 9.0 today. That is down from 10.6 on Wednesday, only 5 days ago. That's the biggest since a drop from 10.2 to 8.2 in 7 days back in December. But the worst was back in March last year. My hgb dropped from 7.4 on a Wed morning to 5.9 by midnight on Thursday. I went to the emergency room with irregular heartbeat, was admitted to the hospital and had 4 units of blood on Friday. Now, we try to keep my hgb above 9.0 so I feel a lot better and am able to work.
Actually, it has been 12 days since my last transfusion and the average is 10 days between. I felt very tired and short of breath this weekend and my heart has been beating harder. I took a day vacation today since my wife is home from school teaching this week. Probably would have had to come home from work today anyway to take a nap. In spite of all this, I made three quick trips to Home Depot this weekend. I disconnected the water to our old refrigerator, replaced two venetian blinds and fixed the vanity and shower faucets in the master bedroom. I just worked a little at a time and rested in between.
I also completed 3 health care reimbursement forms to recover $2200 in medical expenses. Not too bad considering I have only paid in $500 so far in the first two months this year. Actually, this was recovering part of over $2500 that we have paid on medical expenses so far. The advantage, of course, is that the HCRA is taken from my paycheck before taxes. I also found out that the Aranesp shot that I get every two weeks costs about $4400 of which I paid 10%. At that rate, it does not take too long to pay the $2500 yearly maximum on my insurance.
Thank God for insurance. Over the last three years, my total cost for health care has been $487,292 though I have only paid $8113. The BMT is supposed to cost about $250,000 and my lifetime maximum is only a million. I still need to find out how much insurance has actually paid since they don't pay all that is billed. For example, the Aranesp shot is actually billed at $6800, $2400 of which the provider is not paid.
Actually, it has been 12 days since my last transfusion and the average is 10 days between. I felt very tired and short of breath this weekend and my heart has been beating harder. I took a day vacation today since my wife is home from school teaching this week. Probably would have had to come home from work today anyway to take a nap. In spite of all this, I made three quick trips to Home Depot this weekend. I disconnected the water to our old refrigerator, replaced two venetian blinds and fixed the vanity and shower faucets in the master bedroom. I just worked a little at a time and rested in between.
I also completed 3 health care reimbursement forms to recover $2200 in medical expenses. Not too bad considering I have only paid in $500 so far in the first two months this year. Actually, this was recovering part of over $2500 that we have paid on medical expenses so far. The advantage, of course, is that the HCRA is taken from my paycheck before taxes. I also found out that the Aranesp shot that I get every two weeks costs about $4400 of which I paid 10%. At that rate, it does not take too long to pay the $2500 yearly maximum on my insurance.
Thank God for insurance. Over the last three years, my total cost for health care has been $487,292 though I have only paid $8113. The BMT is supposed to cost about $250,000 and my lifetime maximum is only a million. I still need to find out how much insurance has actually paid since they don't pay all that is billed. For example, the Aranesp shot is actually billed at $6800, $2400 of which the provider is not paid.
Thursday, March 08, 2007
BMT Schedule
I talked with the coordinator at the U of MN Fairview BMT program today and scheduled my BMT, actually a Peripheral Blood Stem Cell transfusion. I will start on Monday, April 23, for 5 days of outpatient tests to confirm that I am healthy enough to proceed and establish a baseline for comparison during recovery. One of the first procedures with insertion of a central line that will be used for months for IVs, antibiotics, chemotherapy and the actual BMT. They will then test me from top to bottom.
My brother will also have a physical that week, though a lot less thorough, only taking about 1/2 day. Hopefully, this can be completed in Missouri where he lives since he will not need to be at the BMT clinic until a week later.
On Monday, April 30, I will check into the BMT Unit 4B at Fairview - University hospital. On Tuesday, May 1, they will start chemotherapy to kill off my bone marrow. From May 3 to May 6, my brother will receive growth factors to mobilize stem cells from his marrow to his blood. This procedure is done on an outpatient basis, once a day. On May 7 and 8, stem cells will be filtered from his blood and shortly afterward transfused into my blood stream.
Then the miracle happens, a rebirth, close to my actual 59th birthday on May 9th. Somehow, the stem cells find their way into my bone marrow and start producing new healthy blood cells. If all goes well, I should be out of the hospital early in June and back to work by the end of the summer.
My brother will also have a physical that week, though a lot less thorough, only taking about 1/2 day. Hopefully, this can be completed in Missouri where he lives since he will not need to be at the BMT clinic until a week later.
On Monday, April 30, I will check into the BMT Unit 4B at Fairview - University hospital. On Tuesday, May 1, they will start chemotherapy to kill off my bone marrow. From May 3 to May 6, my brother will receive growth factors to mobilize stem cells from his marrow to his blood. This procedure is done on an outpatient basis, once a day. On May 7 and 8, stem cells will be filtered from his blood and shortly afterward transfused into my blood stream.
Then the miracle happens, a rebirth, close to my actual 59th birthday on May 9th. Somehow, the stem cells find their way into my bone marrow and start producing new healthy blood cells. If all goes well, I should be out of the hospital early in June and back to work by the end of the summer.
Wednesday, March 07, 2007
Getting closer
I met with my Dr today and we talked again about scheduling the BMT. He called the BMT clinic to get things rolling. I need to call them tomorrow and start deciding on the details. In general, it may start the week of April 16th with about a full week of various physical tests to assure that my health is good enough to proceed. The BMT may be close to my 59th birthday on May 9th.
On the current front, my Hgb was 10.6 today so I don't need a transfusion this week. I have one scheduled now for next Tuesday, a span of 12 days since the last. But since the last was a little early at 7 days, the average interval of about 10 days should continue. My other blood counts are normal.
I thought for sure that I needed a transfusion this week since I was so tired. I went to bed at 7:30 last night, slept until midnight, watched TV for a couple of hours and then slept until 6:30 am. I was still tired most of today. But then, fatigue is part of this disease.
On the current front, my Hgb was 10.6 today so I don't need a transfusion this week. I have one scheduled now for next Tuesday, a span of 12 days since the last. But since the last was a little early at 7 days, the average interval of about 10 days should continue. My other blood counts are normal.
I thought for sure that I needed a transfusion this week since I was so tired. I went to bed at 7:30 last night, slept until midnight, watched TV for a couple of hours and then slept until 6:30 am. I was still tired most of today. But then, fatigue is part of this disease.
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