I had a pretty good night of sleep interrupted occasionally by bathroom needs, vitals and then labs at 4 am. Then I was awaken by the sunrise since my room windows face the east. I showered, ate breakfast, had my central line dressing changed and donated my weekly cultures of stool, urine and mouth swab. They have been giving me fluids and measuring all my outputs. My hemoglobin is 8.4 which is low considering that it was 9 on Friday when I got a transfusion. By my history, it should be close to 10. Nothing to worry about since they monitor everything closely and I will get more blood whenever it is needed.
The nurse just started the first chemotherapy called Fludarabine which I will have for a hour a day for five days. The side effects are not too bad, though the nurse put on a special gown and wore rubber gloves to protect herself in case she spilled any while hanging the IV. In an hour, I start on the Cytoxan which is supposed to be the worst as far as nausea but that is a one time 2 hour dose. Then, I get Allopurinol for 6 days. I also get ATG (Anti-thymocyte globulin) and MP (Methylprednisolone) for 3 days.. The first three supposedly kill off most of my bone marrow while the last two suppress my immune system. All this is subject to review and change as the doctors monitor my reactions and condition. The regimen is called a mini-BMT, not a full BMT. They do not eliminate all of my bone marrow, but weaken it so that my brother's donor cells can take over.
BTW, I have better wireless access (5 - 7 mbps so far) to the internet here than I have through my wired access through ComCast at home. Time will tell how the speed holds up.
Wednesday, May 02, 2007
Tuesday, May 01, 2007
Central Line
I have checked into the hospital after getting my central line put in. It took a couple hours of paper work and vital signs before they started the procedure and then about a hour to complete. I was settled in my room by about 4 pm.Priot to starting the procedure, they shaved my chest, but did not do a wax. It may be hard to see in the photo (that is reversed left for right by the camera on my laptop), but there is an incision up my my neck above the jugular vein on the right side. This area was numbed up with lidocaine, a needle was inserted and then a wire that went down towards my heart to measure the distance. A "straw" was inserted over the wire to hold the jugular vein open. Then about 4 inches lower, an incision was made and a tunnel made through the fatty tissue up to the other incision. A rod was pushed through attached to the catheter which was then pulled through. The catheter was inserted through the straw into the vein and the straw was split and peeled back like a banana. The catheter was pushed further in towards the heart and the upper incision was glued shut.
That is the place that is hurting this evening since whenever I move my head it tends to stretch the skin in the area. A stitch was placed around a little cuff on the catheter just where it exits my chest. There are two lumens that can be used for blood draws and IVs. The catheter has a divider inside for its full length. The red one is used for blood draws like the 14 vials of blood they took out when I got to my room.
My wife was with me all afternoon except for the placement of the catheter. My son rode his bicycle down to the hospital and back later, a round trip distance of 20 miles. We took a tour of the BMT ward and then walked about three blocks outside to Sally's for a cheeseburger. I have been back in my room for a couple of hours. I am feeling pretty good so far, but the chemotherapy starts in the morning.
Thanks for all of your comments and prayers. I really appreciate everything you are doing. By the way, do not send any flowers which are not permitted in the BMT ward. If you wish to call, my phone # is 612-273-0205. Cellphones cannot be used on the ward. If you wish to visit, I am in the BMT ward 4B, room 221. It is probably best to wait a few weeks though since I will probably be pretty miserable over the next week and susceptible to infections after that. Surprisingly, they do permit up to 3 visitors at a time, but make you wash your hands and wear a mask if you have any sniffle.
Monday, April 30, 2007
It's a Go for BMT
I just got word from the BMT Clinic that the BMT is moving forward. Both my brother (the donor) and I have been given a clean bills of health. I check into Fairview University Hospital at noon on Tuesday and have a central line placed at 1:30 pm. Chemotherapy to wipe out my old bone marrow starts on Wednesday. I have radiation on Monday and then receive the BMT on Tuesday, next week.
I went to work this morning for a few hours. Cleaned off my desk and filed a few more things. Then came home home and mailed my last Health Care Reimbursement Request for the year. There is plenty of things I need to do around home, but I think I will take a nap for a few hours.
I went to work this morning for a few hours. Cleaned off my desk and filed a few more things. Then came home home and mailed my last Health Care Reimbursement Request for the year. There is plenty of things I need to do around home, but I think I will take a nap for a few hours.
Friday, April 27, 2007
Transfusion #42
The last thing I did at the BMT Clinic yesterday was to get a blood test with type and cross for a blood transfusion today. Since I was now at a different clinic, I had to convince the lab technicians that they should take more vials of blood for the blood bank to match the extra antibodies that I have in my blood. I worked about 3 hours this morning and called the clinic to confirm that they had the blood for me. Again, I had to insist that they check with the blood bank to assure that they actually had the blood. So when I got to the clinic at 12:30 pm, I knew the blood was waiting.
But the nurse told me that they could not give me blood because my hemoglobin was at 9.1 yesterday and not below the 9.0 level the doctor had ordered. Again, I insisted that they check with the doctor since my hemoglobin was probably already below 9.0. I even pulled up my history of hemoglobin change on my laptop, showing that my hgb dropped at least one point per week and would be too low by the time I entered the hospital and they got me blood next week. I didn't need to talk to anyone else before they took me to a new area for the transfusion.
The first nurse tried two times to get the IV inserted and then passed responsibility over to another who did it on the first try. The BMT Clinic seems to transfuse blood at a faster rate so I was finished by 4pm just in time to stop by the pharmacy to pick up some Lovenox. This was my 42nd transfusion and 85th unit of rbcs.
In preparation for insertion of the central line on Tuesday, I need to be off of my Coumadin blood thinner. I am now back to giving myself injections of Lovenox twice a day. Coumadin takes about 5 days to clear my system while Lovenox takes less than a day. I can stop the Lovenox injections one day and have the surgery to insert the central line the next.
It has been a long week with at least 15 appointments. I have also been into work three times though worked less than 8 hours total. I still need to make it in one last time to clean up some of my files. I am looking forward to my last weekend before going in for the BMT
But the nurse told me that they could not give me blood because my hemoglobin was at 9.1 yesterday and not below the 9.0 level the doctor had ordered. Again, I insisted that they check with the doctor since my hemoglobin was probably already below 9.0. I even pulled up my history of hemoglobin change on my laptop, showing that my hgb dropped at least one point per week and would be too low by the time I entered the hospital and they got me blood next week. I didn't need to talk to anyone else before they took me to a new area for the transfusion.
The first nurse tried two times to get the IV inserted and then passed responsibility over to another who did it on the first try. The BMT Clinic seems to transfuse blood at a faster rate so I was finished by 4pm just in time to stop by the pharmacy to pick up some Lovenox. This was my 42nd transfusion and 85th unit of rbcs.
In preparation for insertion of the central line on Tuesday, I need to be off of my Coumadin blood thinner. I am now back to giving myself injections of Lovenox twice a day. Coumadin takes about 5 days to clear my system while Lovenox takes less than a day. I can stop the Lovenox injections one day and have the surgery to insert the central line the next.
It has been a long week with at least 15 appointments. I have also been into work three times though worked less than 8 hours total. I still need to make it in one last time to clean up some of my files. I am looking forward to my last weekend before going in for the BMT
Thursday, April 26, 2007
Fitted for Suit
Well, it has been quite a week of medical tests starting on Monday and wrapping up with a final review with the Dr and approval to move ahead this afternoon. Actually, the consent forms that I signed are still subject to results of tests that my brother had today but won't be known until Monday. The start of the process has been delayed until Tuesday, May 1, when I should check into the hospital.
The first thing that will be done is placement of a central line, a dual-lumen catheter that is inserted into my chest and goes under the skin to my jugular vein near my neck. This will be used for all IV and blood draws for the next several months. A review of that procedure was the subject of one of my consultations this week. I had other consultations about all of the chemotherapy and side effects. I signed about 6 different agreements for research studies relative to the main BMT or related tests.
One was related to the study of osteoporosis in BMT patients. I had a bone density scan that showed that I did not qualify since my bones are denser that average. [One benefit of being overweight.] I had a pulmonary function test that showed my lungs were operating at about 75% of normal. A chest x-ray, a CT scan, an EKG and a MUGA heart scan did not show any problems. In fact, my lungs seem clear from the blood clots that I had before though there has been some permanent damage.
The big test was a Bone Marrow Biopsy which still showed all of the same results that it has for the last two years. This biopsy was about average level of torture of the five that I have had. I did it with just local lidocaine and novocaine. There was pressure as they extracted the bone marrow sample with a hollow needle and then pain as they sucked out aspirate three more times. The December test took three attempts before they got a good bone sample.
So why am I being fitted for a suit. That was actually a joke with the doctor who I consulted with about the radiation therapy. I will get a TBI, total body irradiation. The radiation is given from both sides of my body . In order to assure that the radiation is uniform between narrow parts of the body, such as the head, versus wider parts such as through the arms and chest, the technician makes up filters to reduce the x-ray beam to the narrow parts. In order to make the filters, the patient's body is measured with wide calipers, similar to being measured "for a suit". The actual radiation will probably be given on Monday, May 7, and is at a level about 1/5th what they use normally. That will be after about 5 days of chemotherapy and just before the actual BMT.
The first thing that will be done is placement of a central line, a dual-lumen catheter that is inserted into my chest and goes under the skin to my jugular vein near my neck. This will be used for all IV and blood draws for the next several months. A review of that procedure was the subject of one of my consultations this week. I had other consultations about all of the chemotherapy and side effects. I signed about 6 different agreements for research studies relative to the main BMT or related tests.
One was related to the study of osteoporosis in BMT patients. I had a bone density scan that showed that I did not qualify since my bones are denser that average. [One benefit of being overweight.] I had a pulmonary function test that showed my lungs were operating at about 75% of normal. A chest x-ray, a CT scan, an EKG and a MUGA heart scan did not show any problems. In fact, my lungs seem clear from the blood clots that I had before though there has been some permanent damage.
The big test was a Bone Marrow Biopsy which still showed all of the same results that it has for the last two years. This biopsy was about average level of torture of the five that I have had. I did it with just local lidocaine and novocaine. There was pressure as they extracted the bone marrow sample with a hollow needle and then pain as they sucked out aspirate three more times. The December test took three attempts before they got a good bone sample.
So why am I being fitted for a suit. That was actually a joke with the doctor who I consulted with about the radiation therapy. I will get a TBI, total body irradiation. The radiation is given from both sides of my body . In order to assure that the radiation is uniform between narrow parts of the body, such as the head, versus wider parts such as through the arms and chest, the technician makes up filters to reduce the x-ray beam to the narrow parts. In order to make the filters, the patient's body is measured with wide calipers, similar to being measured "for a suit". The actual radiation will probably be given on Monday, May 7, and is at a level about 1/5th what they use normally. That will be after about 5 days of chemotherapy and just before the actual BMT.
Sunday, April 22, 2007
Keep moving forward
My son and I went up to the lake cabin near Bemidji, MN, on Friday and came back today. Yesterday, we went to a movie theater in Cass Lake. It is just a single screen theater to which we like to give business. Where else can you get a movie for $3.50 and large popcorn and two medium drinks for $8.75 these days. But then you have no choice of movies so we went to see "Meet the Robinsons", an animated Disney film about a genius orphan looking for a family. Without giving up the plot, the theme was Walt Disney's own, "... We keep moving forward...". It also is very appropriate to my decision going forward with the BMT.
While we were at the lake, the ice went out. This was the first time that we experienced this since we have never been there before in April . My mother-in-law says it always happens around her birthday which was on the Thursday. It was dark when we arrived on Friday night though we had enough light to see that there was just a little open water near shore. Since we had no running water and the septic tank was still frozen solid, we went into town for breakfast and a toilet. When we came back, we could see noticeable cracks forming in the lake ice. When we got back from the movie about 3:30 pm, we saw movement in the ice. We sat down near the lake and could hear the ice cracking, see it shifting and piling up in some places along the shore. It rained over night and when I looked outside in the morning, there was an expanse of open water out about 100 feet, parallel to shore. A rock that my son threw out on the ice had moved down the shore and about 50 feet closer as well. Later as we were packing to head home, we noticed a path of open water going straight across the lake. One the cracks opened up about 100 feet wide over the space of at most 30 minutes. I have evidence of the changes in digital photos.
Since I see positive signs in many things, I see it in the open water as well. Just like Moses was parting the Red Sea. I believe the ice is going out in my medical situation. Both my wife and brother mentioned that Evel Knievel was on the "Hour of Power" this morning. The show is available on line if you wish to watch it. After many years of high and low living, he recently told the devil to get out of his life and Jesus Christ to come in. He was baptized by Dr. Schuller and followed by many other people doing the same. Has the ice gone out of your life as it has in Evel's?
Tomorrow, I start my pre-BMT tests and attend a BMT class. In one week, I check into the hospital. Check out CaringBridge as well for more posting by other members of my family.
While we were at the lake, the ice went out. This was the first time that we experienced this since we have never been there before in April . My mother-in-law says it always happens around her birthday which was on the Thursday. It was dark when we arrived on Friday night though we had enough light to see that there was just a little open water near shore. Since we had no running water and the septic tank was still frozen solid, we went into town for breakfast and a toilet. When we came back, we could see noticeable cracks forming in the lake ice. When we got back from the movie about 3:30 pm, we saw movement in the ice. We sat down near the lake and could hear the ice cracking, see it shifting and piling up in some places along the shore. It rained over night and when I looked outside in the morning, there was an expanse of open water out about 100 feet, parallel to shore. A rock that my son threw out on the ice had moved down the shore and about 50 feet closer as well. Later as we were packing to head home, we noticed a path of open water going straight across the lake. One the cracks opened up about 100 feet wide over the space of at most 30 minutes. I have evidence of the changes in digital photos.
Since I see positive signs in many things, I see it in the open water as well. Just like Moses was parting the Red Sea. I believe the ice is going out in my medical situation. Both my wife and brother mentioned that Evel Knievel was on the "Hour of Power" this morning. The show is available on line if you wish to watch it. After many years of high and low living, he recently told the devil to get out of his life and Jesus Christ to come in. He was baptized by Dr. Schuller and followed by many other people doing the same. Has the ice gone out of your life as it has in Evel's?
Tomorrow, I start my pre-BMT tests and attend a BMT class. In one week, I check into the hospital. Check out CaringBridge as well for more posting by other members of my family.
Wednesday, April 18, 2007
Transfusion #41
My next transfusion is scheduled for tomorrow afternoon. This will be #41 and 83rd unit of rbcs. My hgb was 8.8 yesterday so I am a little tired but not as bad as last week when it was a point lower. I also made it to the dentist, the lawyer, the bank and the pharmacy yesterday. I only worked 2 hours after lunch and came home for a nap. Today, I worked a full day.
I had a good trip to Scottsdale last week. Flew out on Thursday and back on Sunday. During that time I spent at least 26 hours in meetings and discussions in between. I had leg pains at night from too much standing and skipped the BBQ and star gazing out in the desert on Friday night. I am still working on the trip report, but got my expense report in and payment back in two days. Certainly a record time for me if not the company.
Countdown is 5 days to start of tests, 12 days to check into the hospital and 19 days to the actual BMT. My next post will probably be on Monday after my initial appointments.
My brother has started a series of daily scripture promises which we are posting on the Caring Bridge web site that my daughter started last November. That site also has a guestbook that you may wish to use. If you don't already know my identity, you can find out there.
I had a good trip to Scottsdale last week. Flew out on Thursday and back on Sunday. During that time I spent at least 26 hours in meetings and discussions in between. I had leg pains at night from too much standing and skipped the BBQ and star gazing out in the desert on Friday night. I am still working on the trip report, but got my expense report in and payment back in two days. Certainly a record time for me if not the company.
Countdown is 5 days to start of tests, 12 days to check into the hospital and 19 days to the actual BMT. My next post will probably be on Monday after my initial appointments.
My brother has started a series of daily scripture promises which we are posting on the Caring Bridge web site that my daughter started last November. That site also has a guestbook that you may wish to use. If you don't already know my identity, you can find out there.
Tuesday, April 10, 2007
Transfusion #40
After a little torture, I had my 40th transfusion and 81st unit of RBCs today. Seems like my veins are starting to hide or becoming scarred so it is getting harder to get needles in. It took 4 trys yesterday to get the blood sample and 3 today to start the transfusion. The day hospital was also busy and short staffed so it took me 2 1/2 hours yesterday and 7 1/2 hours today away from work. I had my MacBook Pro with me today so got some work done of my report that I would like to turn in tomorrow.
My Hgb dropped rapidly since last Wednesday when it was 9.8. It was down to 8.0 yesterday, so dropped 1.8 points in 5 days. It was probably 7.8 or less today and I was really dragging. This is the lowest it has been since last April 17 when it was 7.9. Interestingly, that was also over an Easter weekend, remembering the blood that Christ shed for me. Over the past year, we have attempted to keep my hgb above 9.0, allowing me to work a full 40 hours per week.
I am heading to Scottsdale, AZ on Thursday for the COFES conference and will be back on Sunday. Next week I need to wrap up everything I am working on just as if I will not return to work. I will make it back into the office for a few hours the following week if only to pick up my expense check for the AZ trip.
Countdown is 13 days to start of tests, 20 days to check into the hospital and 27 days to the actual BMT.
My Hgb dropped rapidly since last Wednesday when it was 9.8. It was down to 8.0 yesterday, so dropped 1.8 points in 5 days. It was probably 7.8 or less today and I was really dragging. This is the lowest it has been since last April 17 when it was 7.9. Interestingly, that was also over an Easter weekend, remembering the blood that Christ shed for me. Over the past year, we have attempted to keep my hgb above 9.0, allowing me to work a full 40 hours per week.
I am heading to Scottsdale, AZ on Thursday for the COFES conference and will be back on Sunday. Next week I need to wrap up everything I am working on just as if I will not return to work. I will make it back into the office for a few hours the following week if only to pick up my expense check for the AZ trip.
Countdown is 13 days to start of tests, 20 days to check into the hospital and 27 days to the actual BMT.
Wednesday, April 04, 2007
Countdown -32 days
If all goes as planned, I will have my BMT in 32 days on May 7. But it still all depends on a week of tests starting in 25 days on April 23. I saw the Dr today and all is still go from his perspective. My Hgb was 9.8 today so I should not need another transfusion until next week just before I head for the COFES conference in Scottsdale on Thursday.
We had a great party here for my sister (65) and my son (18) on Sunday. I overworked my legs and arthritic knees and had terrible leg cramps early Monday morning. My right knee still hurts when I walk but I don't think that there were any blood clots.
I had fun showing off our new 46" wide screen HD TV which I decided to get before going in for the BMT. I figured that it would great to have while sitting around the house for months after getting out of the hospital. I am also enjoying it right now.
We had a great party here for my sister (65) and my son (18) on Sunday. I overworked my legs and arthritic knees and had terrible leg cramps early Monday morning. My right knee still hurts when I walk but I don't think that there were any blood clots.
I had fun showing off our new 46" wide screen HD TV which I decided to get before going in for the BMT. I figured that it would great to have while sitting around the house for months after getting out of the hospital. I am also enjoying it right now.
Wednesday, March 28, 2007
Transfusion #39
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.
33 days until hospital checkin. 40 days until BMT.
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.
Wednesday, February 28, 2007
Unit #75
Well, I will have my 75th unit of blood (packed red blood cells) on Thursday. My Hgb was 9.6 on Tuesday, but normally not low enough for a transfusion. But with my history or dropping about .2 per day, it would be down to about 8.2 by next Tuesday. It will probably be 9.2 anyway on Thursday. This is also my 37th transfusion. Average time over last 4 transfusions is 9.8 days between. Other blood counts are normal.
I have a Dr appt next week on March 7th, but most likely no transfusion. Will start planning the details of the BMT which is only about 2 months away.
I have a Dr appt next week on March 7th, but most likely no transfusion. Will start planning the details of the BMT which is only about 2 months away.
Thursday, February 22, 2007
Transfusion #36
Still sounds like a broken record since I had another transfusion today, only 9 days since the last. This makes the count 73 units of blood. I was in for my weekly blood test on Tuesday and discovered my hgb was 9.1. Yesterday, I felt so tired that I went home from work after lunch and slept the whole afternoon. After the transfusion today, I still took another nap as well. 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.
My other blood counts are normal.
Monday, February 12, 2007
Victorious Engineer
Before I explain the title of this blog, my Hgb was 9.1 today and I will have transfusion #35 and my 71st unit of blood tomorrow afternoon. When I went in for my blood test today, I really thought my hgb would be lower since I felt more winded than usual and have been having frequent headaches, another symptom of low oxygen levels.
Last week, I saw a TV commercial that stated that elevated CO levels cause the same symptoms and that CO detectors become less effective with age. Ours was over 6 years old and should be replaced every 5 years. Since temperatures here were below zero for a whole week, our furnace had also been working overtime. I bought 2 new CO detectors, one with a digital display. The display has been reading zero every day downstairs near the furnace. The other unit is upstairs near our bedrooms.
Back to the title, I received a personal invitation to the "The Congress on the Future of Engineering Software" last week and approval from my employer to attend. The conference is on April 12-15, within about 2 weeks of my planned BMT. Doctor says it is OK for me to travel out to Scottsdale, AZ which is also near a branch of Mayo Clinic. Anyway, I appreciate the vote of confidence from my employer as well as my family and the doctor. I have something to contribute to this conference and to gain for use after my recovery from the BMT.
I AM getting there on the title. One of the principals in the conference is a very talented journalist named Joel Orr. A good first name, don't you think. Well, back in 1999, I received a book written by him as a gift after hints to my wife. Remembering the book, I went to my bookcase. There it was, "The Victorious Engineer". Not a coincidence, but a "Godincidence" which I consider further support for my decision to move ahead. I will be victorious over this disease as Christ was over death.
In reviewing the book again, I could quote positive encouraging statements from almost every page. For example, on the title page:
"A man who wins may have been counted out several times, but he did not hear the referee." H.E. Jansen
In the preface, "Of all human types, the engineer is one of the most God-like. Engineers design and make things of all kinds."
On the back page, Joel Orr states, "But all that comes to me is a quiet bubbling thankfulness ... and to God for giving me this wonderful life." He ends with "The Lord bless thee and keep thee; the Lord make His face shine upon thee; the Lord lift up His countenance upon thee and give thee peace."
After reading one of his articles years ago, I sent him an email asking him if he was a Christian. To paraphrase his answer since I don't have the exact words of his reply:
"If I am ever indicted for being a Christian, may there be enough evidence to convict me."
Last week, I saw a TV commercial that stated that elevated CO levels cause the same symptoms and that CO detectors become less effective with age. Ours was over 6 years old and should be replaced every 5 years. Since temperatures here were below zero for a whole week, our furnace had also been working overtime. I bought 2 new CO detectors, one with a digital display. The display has been reading zero every day downstairs near the furnace. The other unit is upstairs near our bedrooms.
Back to the title, I received a personal invitation to the "The Congress on the Future of Engineering Software" last week and approval from my employer to attend. The conference is on April 12-15, within about 2 weeks of my planned BMT. Doctor says it is OK for me to travel out to Scottsdale, AZ which is also near a branch of Mayo Clinic. Anyway, I appreciate the vote of confidence from my employer as well as my family and the doctor. I have something to contribute to this conference and to gain for use after my recovery from the BMT.
I AM getting there on the title. One of the principals in the conference is a very talented journalist named Joel Orr. A good first name, don't you think. Well, back in 1999, I received a book written by him as a gift after hints to my wife. Remembering the book, I went to my bookcase. There it was, "The Victorious Engineer". Not a coincidence, but a "Godincidence" which I consider further support for my decision to move ahead. I will be victorious over this disease as Christ was over death.
In reviewing the book again, I could quote positive encouraging statements from almost every page. For example, on the title page:
"A man who wins may have been counted out several times, but he did not hear the referee." H.E. Jansen
In the preface, "Of all human types, the engineer is one of the most God-like. Engineers design and make things of all kinds."
On the back page, Joel Orr states, "But all that comes to me is a quiet bubbling thankfulness ... and to God for giving me this wonderful life." He ends with "The Lord bless thee and keep thee; the Lord make His face shine upon thee; the Lord lift up His countenance upon thee and give thee peace."
After reading one of his articles years ago, I sent him an email asking him if he was a Christian. To paraphrase his answer since I don't have the exact words of his reply:
"If I am ever indicted for being a Christian, may there be enough evidence to convict me."
Wednesday, February 07, 2007
OK this week
Turns out my Hgb was 10.0 on Tuesday so that I don't need a blood transfusion this week. But figuring the typical drop in Hgb, I scheduled one for next Tuesday after a blood test on Monday. Other blood counts were 346 for platelets, 6.6 for white cells and 19 for Factor 2, all of which are normal.
Though just a formality, I received official approval from my insurance company to proceed with the BMT. Doctor has also approved my travel to a conference on April 12-15. I still need to get company approval for the travel expenses.
Though just a formality, I received official approval from my insurance company to proceed with the BMT. Doctor has also approved my travel to a conference on April 12-15. I still need to get company approval for the travel expenses.
Thursday, February 01, 2007
Transfusion #34
Sounds like a broken record, but I had another transfusion today, only 9 days since the last. This makes the count 69 units of blood. I was in for my weekly blood test on Tuesday and discovered my hgb was 9.2. Yesterday, I felt so tired that I went home from work after lunch and slept the whole afternoon. After the transfusion today, I still took another nap as well. I have also had a lot of headaches and have been very itchy lately. I take Tylenol and Benedryl several times a day in addition to my regular medicines. 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.
My other blood counts are normal.
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