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.
Monday, April 30, 2007
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.
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