Friday, December 29, 2006

Transfusion #31

I didn't expect it to be so soon, but I had another transfusion yesterday (Thursday). When I went in for my blood test and Aranesp shot on Tuesday, my Hgb was down to 9.4. The week before on Wednesday, it was 9.3 and I had a blood transfusion the following day. I really expected it to be higher this week, but ended up in the same situation as last week where my Hgb would drop below 9 by the weekend. I had no problem in getting in for a transfusion this week. Actually, the lab now draws enough blood for a type & cross match when they do the standard blood test. I am already scheduled for a transfusion next week, anticipating they will be busy after the New Year holiday.

My other blood counts are normal. I have ordered a copy of my records to take to Mayo Clinic on January 8th and look forward to making a decision of what to do next. BMT?

Thursday, December 21, 2006

Transfusion #30

Well, I had another transfusion today. While pretty routine now, the biggest story was in the scheduling. Prior to my previous transfusion on Wed, Dec 13, my Hgb was 8.2, so it was no surprise that my HGB was 9.3 yesterday. Because of the Christmas holiday coming up, I pushed for a transfusion on Friday. But there was no room at the "Inn". All of the alternative clinics at the Fairview U of MN medical center were booked up. The earliest that I could get in was on Tues, Dec 26. By then, my Hgb would certainly be close to 8 and wouldn't have the energy to really enjoy Christmas.

My doctor said he would "throw his weight around" to get me in, but called me back this morning saying that "he was not heavy enough". I had two alternatives: check into the hospital or go to the emergency room, either of which insurance might not pay for. Of course, if I did have real shortness of breath or heart problems like I did back in March (Hgb dropped to 5.9), I would have no problem going to the emergency room.

So after deciding I would wait until Tuesday, I received a phone call at work this morning. The Day Hospital where I have my transfusions had a cancellation and my blood was ready. The big snow storm (2" for us) caused someone to cancel, providing time for me. It also turned out that I no longer need to wait 2 days for a blood match, since my Coombs test is now negative.

So I had my 30th transfusion and 61st unit of packed red blood cells during mid-day and made it back to work for a few hours this afternoon. Instead of dragging this weekend, I should be at my highest energy (Hgb) level since June. I also have made an appt for Jan 3 for another transfusion so that I don't get caught in the after New Years scheduling rush.

Since I probably will not post again until next week, remember that "Jesus is the reason for the season." Have a Merry Christmas.

Thursday, December 14, 2006

BMB Results Delayed

I saw the doctor yesterday, but he did not have the final results of the BMB yet. Still very similar to previous ones so far with more blasts (young cells) and fewer red blood cells. The term myelodysplastic and myeloproliferative are still being used. Will know more later and then get opinion from Mayo in about a month. Since it does appear that the RBC production has dropped since I stopped the Procrit, he prescribed Anasesp which is similar. I will get a shot every two weeks when I am in for my blood test. My BMB puncture wound is healed, at least on the outside. I have had little pain since the BMB and main discomfort was from the bandage.

Monday, December 11, 2006

BMB Experience

Even though I have had a Bone Marrow Biopsy (BMB) three times before, the one this morning was a different experience. I had my first in March, 2005, at the Masonic Day Hospital, the same place as today. My wife came with and drove me home afterwards since I had some sedative prior to the procedure. Today, I did not have a sedative since I was driving myself. My second BMB was in May, 2005, at Mayo Clinic where I had no sedative but don't remember a lot of pain. I drove back home afterwards. My third was while in Fairview Hospital in January for other tests as well. I must have had a sedative at that time as well, even though I didn't go anywhere afterwards. Next time I think I will have a sedative.

Some things may be changing with my bones as well since it took four attempts to get the bone marrow sample this morning. Though I did not have sedative, I did have some local Lidocaine to numb the tissue in the test area. The local anesthetic does not numb the interior of the bone. The first attempt hit upon scar tissue or hard bone that the tool could not penetrate easily. (A bone marrow biopsy uses a special tool that twists into the bone. You may feel pressure at the site and hear a crunching sound as the tool twists into the bone.) The second and third attempts hit soft marrow that crushed easily and did not provide a good sample. These two attempts were the most painful, once making pain shoot down my left leg. The fourth attempt was good retrieving a sample about 2 cm long and about 3 mm in diameter. Four samples of aspirate were also sucked from the bone marrow, about 10 ml total volume.

Even though I had three or four holes drilled in my hip bone, there was little pain afterwards and I drove back to work. But after a couple of hours at work, I decided to go home to my recliner since sitting in my desk chair was somewhat uncomfortable. A couple of Tylenol helped as well.

I also had a blood test this morning. While my hemoglobin was 10.2 last Tuesday, it was only 8.2 this morning, the biggest drop in six days that I have had. Maybe the bigger difference is error in the tests or variations by different lab technicians. I will get the results of the BMB and will have another transfusion on Wednesday.

Tuesday, December 05, 2006

BMB Scheduled

I was in for my weekly blood test today and learned that I am scheduled for a bone marrow biopsy (BMB) on Monday, Dec 11. Doctor wants it in prep for my appt with him on Dec 13. I think he also wants it prior to my visit to Mayo in January. The last BMB was on January 11 while I was in Fairview Hospital. My Hgb had dropped to 7.2 after over 3 months being stable at about 9.5. The BMB is the key test as to whether I need the BMT in February.

Surprisingly, my hemoglobin was 10.2 today. I would have guessed that it was closer to 9.2 considering how it has been going recently. White cell and platelet counts were normal. I will probably need a transfusion next week as well, but that is better than needing one this week. Maybe, it will get back to every other week.

Thursday, November 30, 2006

Heinz 57

Maybe I now have Heinz 57 steak sauce running in my veins. That is, I now have had 57 units of red blood cells transfused, most likely from 57 different donors. Each unit potentially leaves a trace of its anti-bodies behind. But since red blood cells live about 120 days, any that I received before the last 20 units are long gone. It took me about a year to get the first 29 units, but only six months to get the rest.

I was surprised that my Hgb was only 8.7 on Tuesday, requiring the transfusion that I had this morning. It was only 10 days since the last one and the average time is now 16 days for this year.

Tuesday, November 21, 2006

Mayo Appointment

My procrastination is over. I finally made an appointment with Dr Alalew Tefferi at the Mayo Clinic in Rochester, MN on January 8. I could have gotten in as early as December 20, but delayed until January. This way I should be able to have one bone marrow biopsy that would satisfy Mayo and still be timely for U of MN prep for possible BMT in February. Dr. Tefferi is recognized as one of the leading authorities on MPD in the world. Not a day goes by where he is not mentioned on one of the MPD email lists that I subscribe to.

On current status, I had a blood transfusion yesterday, #27 for a total of 55 units so far. My Hgb was down to 8.6 and platelets were 445. White cells were down to 8.1, indicating improvement on my sinus head cold which has almost cleared up. I took my last Azithromycin today and currently only have a slight headache.

Saturday, November 18, 2006

Rough week

I traveled to Texas on Monday and woke up with a dry, sore throat on Tuesday. Though I could not speak very well I attended about 8 hours of the conference. The place, Gaylord Texan Resort, was so large and spread out that I had to walk too much. Tuesday night I slept for 12 hours. I attended most of the meetings but skipped the social times which would have required standing and talking. The flight back on Thursday was great. I caught an earlier flight and took a couple of Benedryl. It wasn't until evening that I got some pain in my right ear. I took some Drixoral, slept ok and went to work on Friday (yesterday). Since I had a blood test set up, I called ahead and was able to see the physician assistant as well and got an antibiotic prescription.

Last night I took the initial dose (2 x 250mg) of Azrithromycin along with another Drixoral about 5 pm, but within an hour started experiencing rapid and irregular heart beat. This was similar, but not as bad as I had in March when I went to the emergency room. We called the triage doctor on call who advised me to just rest and see it through. By 9 pm, I was feeling better, but skipped my evening Anagrelide pill which also sometimes affects my heart rate. This morning, I am just into trying to throw this infection off. Now just congestion, sinus pressure, drainage and coughing up nasty stuff.

My blood tests results were mixed again. White cell count was up to 10.9 as a result of the infection. Platelets were 422 which is good. Hgb was 9.0, meaning I am scheduled for another blood transfusion on Monday. Its a good thing I had the last transfusion before going to Texas or last nights episode would have been more difficult with any lower Hgb. The average time between transfusions has dropped to 11 days over the past month.

Sunday, November 12, 2006

Two years

I knew it was close but just realized today that it has been exactly two years since I entered the hospital with a lump and labored breathing. See "The Mystery Begins", my second blog entry. The lump turned out to be an ingrown hair and the labored breathing was a pulmonary embolism, possibly 3 blood clots in my right lung. I have had at least two clots since then. With a 20% mortality rate for a blood clot, by all rights, it is a miracle that I am still here today.

So what does the future hold? A BMT has a mortality rate of 40 to 60 percent, depending on many factors. Or is that a survival rate? Is the glass half-full or half-empty? When asked this question, an engineer might say that the glass was twice a large as it needed to be. How many years of life do you or I need?

Here are some wise words from this morning's sermon by Dr. Robert H. Schuller, titled "The 10 Commandments of Thankful Living", :

"I'm seventy-eight years old and it still shocks me to say that I have never had anything happen in my life, including tragedies, near disasters, that did not turn out to be blessings in disguise. "
"Are you disappointed or discouraged today? Don’t turn the TV set off. Don’t close the book. Don’t walk out of the movie ... the story isn’t over yet. Give your story a happy ending. Thank God for the hope that springs eternal. Because of Jesus Christ, we know that life has no end."
"God will always have the last word, and it will be beautiful! Hallelujah."

With God, the glass will not become empty, but is being continually refilled. Just like when Jesus turned water into wine (John 2:1-11). "Everyone brings out the choice wine first and then the cheaper wine after the guests have had too much to drink; but you have saved the best till now."

Tuesday, November 07, 2006

BMT Option Back

I had a couple of surprises today. My hemoglobin was only 9.1 and my doctor says to start planning for a BMT (blood marrow transplant).

It was only 8 days since my transfusion last week and I expected my Hgb to be about 9.6, the average of my Hgb measured a week after the last 6 transfusions. I was already scheduled for a transfusion on Thursday, in preparation for the trip to Texas next week. If I wasn't, the doctor would have scheduled one anyway. I hope I make it through next week, but will be in for a blood test on the 17th, right after I get back.

Back in August, the doctor said that a BMT would be too risky and a last resort. Today, he said that he recommends we proceed with one. It turns out that my last two Coombs (direct antiglobulin) tests have been negative, meaning that my immune system is not destroying my red blood cells as we thought it was before. I also stopped taking Procrit a month ago and did not see any immediate change. The doctor does not think that the Coombs test result is related to the Procrit. This is all complicated by the fact that my Anagrelide medicine, needed to reduce platelets, also reduces red blood cell production. We need to take another BMB (bone marrow biopsy) to see what is happening where the blood cells are produced.

The current thought is to wait until January for the BMB which would followed by a BMT within one month. The doctor recommends a mini-BMT where the chemotherapy and radiation does not completely wipe out all of my current bone marrow and also does not kill me off before the new stem cells can engraft in the bone marrow. The new bone marrow would hopefully finish off the old bone marrow. He also says that my brother's marrow (stem cells) could still be used, but that umbilical cord stem cells may be used instead. Cord cells are taken from the umbilical cord blood (UCB) of a newborn baby. That is beneficial since UCB has not accumulated a lot of antibodies. The U of MN has one of the most experienced UCB transplant units in the country. (Note that the linked Fairview web site is one of the top returns when searching for "cord bmt" in Google.)

My current thought is to get another opinion from Mayo Clinic in Rochester, but would go with the U of MN and Fairview for the BMT.

Sunday, November 05, 2006

The Heart

Tonight, I was reviewing old bookmarks that I have saved and came across the following on the Christians Unite joke website. Look under the Doctors category for joke titled, "The Heart". Are you a lamb in His flock? Will the doctor find Jesus in your heart?

"Tomorrow morning," the surgeon began, "I'll open up your heart..."

"You'll find Jesus there," the boy interrupted.

The surgeon looked up, annoyed "I'll cut your heart open," he continued, to see how much damage has been done..."

"But when you open up my heart, you'll find Jesus in there," said the boy.

The surgeon looked to the parents, who Sat quietly. "When I see how much damage has been done, I'll sew your heart and chest back up, and I'll plan what to do next."

"But you'll find Jesus in my heart. The Bible says He lives there. The hymns all say He lives there. You'll find Him in my heart."

The surgeon had had enough. "I'll tel! l you what I'll find in your heart. I'll find damaged muscle, low blood supply, and weakened vessels. And I'll find out if I can make you well."

"You'll find Jesus there too. He lives there."

The surgeon left.

The surgeon sat in his office, recording his notes from the surgery, "...damaged aorta, damaged pulmonary vein, widespread muscle de generation. No hope for transplant, no hope for cure. Therapy: painkillers and bed rest. Prognosis:, " here he paused, "death within one year."

He stopped the recorder, but there was more to be said. "Why?" he asked aloud. "Why did You do this? You've put him here; You've put him in this pain; and You've cursed him to an early death. Why?"

The Lord answered and said, "The boy, My lamb, was not meant for your flock for long, for he is a part of My flock, and will forever be. Here, in My flock, he will feel no pain, and w! ill be comforted as you cannot imagine. His parents will one day join him here, and they will know peace, and My flock will continue to grow."

The surgeon's tears were hot, but his anger was hotter. "You created that boy, and You created that heart. He'll be dead in months. Why?"

The Lord answered, "The boy, My lamb, shall return to My flock, for He has Done his duty: I did not put My lamb with your flock to lose him, but to retrieve another lost lamb."

The surgeon wept.. The surgeon sat beside the boy's bed; the boy's parents sat across from him. The boy awoke and whispered, "Did you cut open my heart?"

"Yes," said the surgeon.

"What did you find?" asked the boy.

"I found Jesus there," said the surgeon.

Friday, November 03, 2006


Well, I reached a milestone of 51 units of blood received since June 2005. Over the last 9 times, the average time between has been essentially 2 weeks. I also have one scheduled for next week (Nov 9) to get ahead of the curve and prepare me to make it through the conference in Texas, Nov 13 - 16.

This has been a strange week health-wise. On Monday after my blood test at noon, I went back to work for a hour, then felt very tired and went home to bed. I worked a little at home to account for 6 hours. Tuesdays, I was all energized and worked 10.5 hours. Wednesday, I had the blood transfusion and worked 6 hours, 3 during the transfusion. Thursday, I worked 5 hours before going home with a bad headache at 1 pm and slept for 3 hours. Today, I felt better and worked 10 hours. In all that, I ended up taking 3 hours of sick time.

I may have some small virus since my white cell count was up to 7.3 on Monday. My Hgb was 8.6 (typical), but my platelets were up to 555. Strange though that I have energy one day and not the next. Other MPD patients have much more bouts of fatigue though.

I downloaded a new iTunes song this past week. Sung by Janet Paschal with great lyrics which I wish I had for you. The title says it all: "It won't rain always". Check it out for $.99 at the iTunes music store, the only way I buy music any more. iTunes is free for either Mac or Windows.

Sunday, October 29, 2006

The Whole World

I got home from work a little early on Friday and watched the end of "Millionaire". The last contestant went out on a $2000 simple question about which continents the Sinai Peninsula was between (or part of). The obvious two choices were "Africa and Europe" or "Africa and Asia". The contestant chose it wrong as I would have. It actually is in Asia though part of Egypt which is part of Africa. It just didn't seem right that it (and Israel) are considered part of Asia. They are part of the Middle East or South West Asia.

Anyway, I Googled and found a web site named "". I spent about an hour taking their quizzes on where the countries are and didn't do very well. Just think, I am nearly 60 years old with a PhD and still have so much to learn. You can never stop learning.

Last night, I fired up "Google Earth", a fantastic application. This is one program that sucks up bandwidth and taxes the dual processors of my new MacBook Pro. I can fly around the whole earth and zoom into any area composed of satellite images all stitched together. I spent a couple of hours visiting North Korea, Japan, Tonga and the UP of Michigan. I relived my honeymoon trip to Brockway Mountain Drive and Tahquamenon Falls.

As I was doing this, I thought of the song, "He's got the whole world in his hands". With Google Earth, you can start with the earth at about 3 inches in diameter and it first zooms in so that the diameter of the earth and North America fills your screen. You can give the world a spin with your mouse or zoom in at any point to see houses and cars. You have the whole world in your hand and in your control. Imagine how great a God we have that can do this with the universe and still zoom in to touch our lives.

Thursday, October 26, 2006

Blood History

I thought I would do something different this week, otherwise it has been typical. I keep a medical history log in a spreadsheet. So far I have 192 entries starting six years ago. My records are sparse for the first four years with 17 entries up to October 19, 2004 when my orthopedist scheduled me for knee surgery (see my first blog entry). I actually started the log in early 2005 by reconstructing the history to that point. About six months ago when the doctor started experimenting with different medicines, I started a chart showing how my hemoglobin and platelet count varied with the changes in medication.

If you click on the graph shown here you can see a larger version. The date scale is not linear though pretty consistent with one entry per week over the last three months. Note that the top red line is my hemoglobin and the dark blue line is the platelet count (scale on left). The vertical bars are infusions with the red bars being my blood transfusions. The other lines are pills or shots. If anyone is actually interested in the details of the medications, just post a comment asking for more info.

So what does this show? In June 2005, I was hospitalized with a bad infection and high fever after getting a pneumonia vaccination. Before that my Hgb was steady around 10 and and my platelets were normal count around 400. Then my platelets started up and doctor prescribed Hydrea. But the side effects caused me to switch to the Anagrelide (yellow) that I have been on ever since. The brown line is my Coumadin level which is varied to keep my Factor 2 between 15 and 25. That controls my blood clotting which is also affected some by the platelets. All the other medicines are attempts to control my hemoglobin and red cell count.

It will be interesting to see if stopping the Procrit will have any effect on my Hgb and frequency of blood transfusions. Over the last month, my Hgb has been inching down based on my regularity of getting my blood tests on either Tuesday or Wednesday. With my Hgb of 9.4 on Tuesday this week, I will probably go in for my blood test on Monday next week. One of these weeks, I have to get an extra unit of blood to get me through the week of November 13 when I plan to be in Dallas. Maybe I can get blood earlier next week (Nov 1) and then again the following week (Nov 10) when I also have my next doctor appointment. That should put my Hgb over 10 for the trip.

Friday, October 20, 2006

Cycle Continues

I am still on my regular cycle of blood transfusions every two weeks, like clockwork. I had my 24th transfusion yesterday, total of 49 units of blood so far. My blood counts were hgb=8.5, wc=4.5, platelets=433 and Factor 2=23. I was surprised that my Factor 2 was up after being low last week. I don't remember eating anything much different. My stools seem to have been normal over the past week as well. It has been over a week since I had my last Procrit shot. Procrit is supposed to stimulate red blood cell production. It will be interesting to see if it has any effect on my frequency of transfusions.

I had a hard time going to work this morning, but went since I had a meeting. Both my wife and son were home from school so I took a 1/2 day vacation in the afternoon. I am getting a little depressed about working though I am fortunate to be able to do so. I feel trapped because I have to work to get the insurance and pay the bills. There has to be more to this life, even the unknown portion that I have left.

Yesterday, I received a beautiful get-well card from my niece and her family. Made my day! It had some drawings of a fox, an octopus, a tank, a volcano and a person drawn by the kids. The card said "I am the Lord who heals you" and "Praying His healing power will restore you to health soon".

My daughter, my Harvard theologian, has some deep spiritual thoughts on her Grace Freewill blog. Check it out if you haven't recently. It helps me grapple with what I am going through, expecially her recent studies on the books of Job and Kierkegaard. Maybe, I just need to be a "knight of faith" and should proceed with the BMT. Like Abraham, prepare for the worst outcome of a BMT with the faith that God will heal me through the process.

Saturday, October 14, 2006

More blood in stool

Since my last doctor appt, I took 3 stool samples in for testing on Wed. One the three showed blood confirming what it looked like to me. I assume the doctor still feels it is a bleeding hemorrhoid.

My other blood counts were typical: Hgb of 9.5, white cell count of 4.5, platelets a little lower to 439 and Factor 2 of 14. I reduced my Coumadin for one day to raise the Factor 2. I took my last Procrit shot on Monday. It supposedly took the Procrit some time to take effect so I expect I wouldn't see any big change this week. We suspect that it not helping anyway and my Hgb will not change from its current two week cycle.

I will probably need another transfusion on Thursday, but also need to break the two week cycle. I plan to attend a conference in Texas during Nov 13-16 which is 4 weeks away. I will try to get extra blood on Nov 2 or 9.

Saturday, October 07, 2006

Blood in Stool

Well, this was a busy week with a few surprises. Last Sunday night after my last blog entry, I had stomach cramps and then a strange bout of diarrhea. It had some dark stool plus something that looked like a worm. I took a sample in for test on Tuesday and blood was found. The "worm" must have just been something undigested. On Wednesday, the doctor said it looked like it might have been from a hemorrhoid, but gave me some cards to collect more samples. I have not been constipated and my hemorrhoids have not been hurting or itchy lately. This morning, I had another loose stool with another bloody piece. It has been about 18 months since I had a colonoscopy, but maybe I will need another.

I also had a transfusion on Thursday starting at 7 am and was back to work by noon. Friday, I had an all day conference at the Mystic Lake Casino, almost an hours drive south of here. I left home at 6:30 am (again) and did not get home until 6 pm. Even with a blood test, dr appt and transfusion, I still worked 42 hours for the week. When I got home Friday night, I went straight to bed for a couple of hours.

On Wed, my Hgb was 8.8, white cells were 5.0, platelets were 638 and Factor 2 was 15. Because of increased platelets and itchiness that I have had recently, I have to increase my Anagrelide again. I am also taking Benedryl for the itching from the histamine produced by excess platelets. I also have more headaches and take Tylenol several times a day. Today, I had vision distortion coupled with the headache and took a two hour nap after lunch. Also since it doesn't appear that the Procrit is helping any, I will stop taking it for a month to see what happens with my Hgb. That will at least save the insurance company $2000 per month.

I did get outside today, shopped at Sam's Club, raked and blew some leaves around and fired up the old '76 Malibu. It started right up after I borrowed the battery from the van. It had not been started for close to a year and took a little cranking to get gas to the carburetor. One of the spark plugs is broken, so it misses a bit, but runs surprisingly well. I need to get rid of it since it is just rusting away next to the garage. It has not been on the road for three years.

Sunday, October 01, 2006

Memorial Service

We had a memorial service this afternoon for my mother at my sister's church in Bloomington. It was a beautiful service with many Minneapolis area people attending. I showed my slide show tribute to my mother during the service. I reduced it to 145 slides and synced it with music from Fernando Ortega: I will sing of my Redeemer and Hear me calling, great Redeemer. I also had the strength to get up and talk about my mother and thought I would summarize it here:

I was a Mommie's boy (at which point my sisters seem to say, Amen!) I was born on Mother's Day in 1948 and every birthday I had since, my mother would say I was the best Mother's Day gift she had received.

I was with my mother many times during the last week of her life and I was there with my sister when she died. Though she could not communicate with us, I believed that she was praying for me and others while we were praying for her. During the last moments of her life, my sister and I were reciting the 23rd Psalm. As the gates of Heaven opened for her and she went on through, I could sense the power of God and the joy within her soul.

I thanked the many people at the service who have been praying for me. The 22 blood tranfusions that I have had over the past year have kept this earthly body of mine alive. But it was the big blood tranfusion that Jesus Christ gave me on the cross that will keep me alive for all eternity.

Saturday, September 30, 2006

Blood stats

Not a whole lot to report this week. I actually worked 41.5 hrs while getting in my blood test and taking Andrew to the doctor for his nose checkup. My blood stats are 9.8 for hemoglobin, 5.0 for white cells, 502 for platelets and 16 for Factor 2. Of primary interest is that my platelet count has actually dropped from 573 last month even though I reduced my anagrelide by 1/3. The last time my Anagrelide was dropped to this level, my platelets shot up from 259 to 1050 in 5 days though I also had just finished by the IgG transfusions.

I am sure that my hemoglobin will drop next week and I will have another blood transfusion . I also have another doctor appointment so may learn about what to expect next.

Saturday, September 23, 2006

Busy week

After getting back from Michigan (Mom's funeral) on Sunday, I took vacation on Monday to be with Andrew during and after his sinus surgery. Tuesday, I had an eye doctor's appoinment and went home to sleep for a couple of hours to recover from the eye drops. Wednesday was a wild day. I had my blood test at 7:30am, took Andrew the doctor at 10:30, got a call to go back for a blood type & cross match at 2:30pm, stopped at DHL to pick up my repaired Mac laptop and still managed to work 7.5 hours before getting home about 7pm. I actually worked 9.8 hours on Thursday, trying to make up the time I had missed.

Since my hemoglobin was 10.2 a week ago, I really did not expect it to be 8.6 on Wednesday. I didn't expect it to be 10.2 before either. So I had a blood transfusion on Friday, but was not able to connect my laptop to the university network and to our work computers. Seems like my daughter's university network account has expired and I was out of range of the hospital's guest network. I ended up taking some sick leave to account for the missed hours.

So the count is 22 transfusions, 45 units of packed red blood cells and an average of 18 days between transfusions this year. The last 4 transfusions have been 14 or 15 days between since I slipped from transfusions on Wed to Friday.

Sunday, September 17, 2006

Mother Butterfly

Sorry for the delay in posting, but my mother died last Monday. My sister called from the hospital just before lunch and my mother died in our arms about 3 hours later. It was difficult to tell whether she could comprehend anything we said to her in those final hours, but I imagine that she was more concerned about us and was in perfect peace, knowing she was going to a better place in heaven. We recited the 23rd Psalm as she took her final breaths. I personally gained strength from this experience, like a direct channel to heaven was open for her and we shared in the power of God accepting her soul. May I be as peaceful and trusting in the end.

Thankfully, my blood counts were good on Wed. My hemoglobin was 10.2, where by past experience the week after a transfusion, it should have been closer to 9.3. My platelets were fairly level with previous weeks. Anyway, it gave me added strength for the week and the funeral on Saturday.

I didn't work the rest of the week, but spent a few days putting together a photo slideshow tribute of my mother's life, from her baby picture to her obituary. I had a lot of recent pictures from her 89th birthday party on August 20. I even scanned pictures from my mother's home on Friday night. The funeral home had a large screen tv which I used to cycle through the pictures throughout the visitation. One of these days I will get these posted on my web site as well.

The many tributes to my mother were tear-jerking. I was composed until my niece, Lori, spoke about my mother as a "Super Woman" who just kept going, working and serving everyone in any way she could. Lori related a story of when she was 8 and asked my mother if she could eat Thanksgiving dinner in the new living room with her big cousins. Then she accidently dumped her full dinner from the tv tray unto the new carpet. My mother did not get mad, but cleaned up the mess while comforting my niece and making her feel at ease. That was my mother, always gracious and never getting mad. After Lori's story, I was an emotional wreck and could not speak myself. Thanksfully, there was no shortage of tributes to my mother's life.

Remember the butterfly story about my father in my last post and the butterfly that showed up in the floral arrangement when I was in the hospital in Nov 2004. Why, there was also a butterfly at my mother's birthday party, there was one on the newspaper section of her obituary and also one on the program for her funeral. Coincidence? No, God-incidence as I once heard in a sermon. The butterfly has now emerged in a new heavenly body.

Saturday, September 09, 2006

Mom's status

Since I posted on Tuesday, I have had another blood transfusion (43 units over 21 sessions since first June 2005) and my mother has been going down hill. I visited her after my transfusion on Thursday and her response was minimal. Andrew and I visited again Thursday night and she seem to acknowledge when I said "I love you". I went to visit her today as my sister (Lola) relates in the following from an email message:

"Some of you know and some of you don't but my Mom had another stroke on Monday, the 4th of Sept. We were supposed to take her home this week but now she will soon be going home to heaven. She was able to talk with us some the beginning of the week but as the week has progressed she has gone into a coma. Joel, ( my brother), Don, another friend and I went to see my Mom this afternoon and had a little prayer service for her and sang a few songs. She seemed to try to open her eyes a little when we sang and prayed. It is difficult to see her like this but we know her greatest joy would be to wake up in heaven in the arms of Jesus. Please pray for us and for her these days. It may be a few days or it may be a week. It is hard to say how long it will be. Only God knows that."

My problems are forgotten in light of the current family situation. So many memories of my 58 years with my mother come to mind. She has had a good life of 89 years and is ready to go to be with Jesus and my father who died almost three years ago. As I sit with her it reminds me of sitting with my father five years ago and wondering what he was thinking. I related an analogy of a Butterfly on my Story2Tell website at that time. Likewise, perhaps my mother is like a Butterfly as well or soon to be in a beautiful new body in heaven.

Tuesday, September 05, 2006


Again, my hemoglobin is down to 8.4 and I am scheduled for a transfusion on Thursday. This makes 43 units of red blood cells since my first and an average of every 18 days during this year. Other blood counts were essentially the same though platelets were down some to 534. Strange since they should go up with my reduction of Anagrelide.

Again, my mother is back in the hospital with another stroke. This one was caused by bleeding into her skull on the right side. A 2 inch spot was visible on the CT scan and is putting pressure on her brain. It happened early Monday morning and I met my sister, Charlotte, in the emergency room at 7:30am. Mom is still aware and recognizes people, but has extreme difficulty speaking. She was doing better today, but doctors don't hold much hope for her going home again. Sunday, she was moving on her own with the walker, had control of her bladder and would have gone back to Lola's today. A day later and everything has changed.

Thursday, August 31, 2006

Weekly Update Again

It has been another week in what is a repeating two week cycle. Since the blood transfusion last week, my hemoglobin is back to 9.3. It probably was up to about 10.5 after the transfusion and by next Wednesday will be back down to around 8.5 again. Platelets and white cell counts were exactly the same even though I reduced my Anagrelide over the past week. Factor 2 was 16, almost half of the 31 last week, but within range of target 15-25 range. I didn't eat any spinach and fewer greens this week. It is a boring report but good that it is repeatable. Not much, but the frequency of my transfusions has changed in the last year. Then, I was on my third one with about 5 weeks between them.

On the iron storage measure, my ferritin level is 2272 where normal range is 12 to 300 for men and 12 to 150 for women. My doctor is still not concerned and my ferritin has actually gone down some since May. Marilyn's ferritin level is 7 and is getting an iron infusion tomorrow.

I just got back from visiting my mother at the nursing home. She will probably get to return to my sister Lola's house next Tuesday. Once she heard that she could get out if she could get around with a walker, she started moving. Just needed some incentive. Bad news is that she will need a catheter and bag for her urine for the rest of her life. I was also there on Tuesday when we attended an organ concert and sing along. She seemed to enjoy that as much as I did.

I was up at 3am this morning and drove Anna and Andrew to the airport. They traveled with two cats and are safely at Anna's new appartment in Cambridge, MA this evening. Tommorow, they tour MIT and Saturday recover Anna's shipped boxes from Amtrac. Sometime in there they are looking to buy some used furniture since all of Anna's is still back here in our garage. They will rent a ZIP car minivan in order to move this stuff. Andrew will be back home to start his senior year in high school on Tuesday. Anna will be starting her second year of graduate study at Harvard Divinity School.

Thursday, August 24, 2006

BMT Possibilities

Well, I had another blood transfusion this week (Wed) as expected. My hemoglobin was 8.8 on Tuesday when I went in a day early since I wanted to get the transfusion as soon as possible. I was dragging over the weekend though I made it to my mother's 89th birthday party at the nursing home on Sunday night. My platelets were up to 573 and my Factor 2 was up to 31. I missed a day of medication on Saturday and had a big spinach salad at the birthday party. This most likely is related to the rise. Spinach is high in Vitamin K which counteracts the Coumadin.

I also met with my doctor on Wed along with Marilyn and Anna. We discussed what is next and were discouraged from putting much hope in a BMT. Dr still wants to try other treatments first, initially trying a combination of anagrelide and hydrea. I have reduced my anagrelide to one pill per day, rather than taking alternating between 1 and 2 pills each day. This what we tried in early June when I went for 5 days before platelets hit an all time high. My expectation is that this will not help, but Dr will add some hydrea to compensate. I don't expect frequency of transfusions to change though I did go for 28 days at that time. It seems like medicine reduces both platelets and hgb.

The Dr did talk more about the possibility of a mini-BMT. In essence, they would use less chemotherapy and radiation so all of the old bone marrow would not be destroyed. The new donor stem cells would then battle the old bone marrow for dominance and hopefully take over. In this case, some studies indicate that it would be better to have a MUD (matched, but unrelated donor) than my brother donate the stem cells. The following Only Real Cure article (which I referenced before) describes this very well. It also indicates that my chances of survival could be between 30 and 60% after two years depending on how many penalty points I rate. I have not found any similar statistics for people receiving blood transfusions or the medicines that I am on. I will also need to add something like Exjade to counter the buildup of iron from the transfusions.

This may not seem very encouraging, but I am thankful for each day that I have. I have survived at least 5 blood clots in my lungs where the chance of death were about 20 percent for each one. By all rights, I am living on borrowed time, by the grace of God. Think about it for a new perspective on life each day.

Friday, August 18, 2006

Weekly update

Well, I had my blood tested on Wed with expected results. Hemoglobin is 9.5 with other components essentially unchanged. After the blood transfusion last week, it has probably dropped a point and will drop more by next week. I expect to see about 8.5 next Wed and get another blood transfusion. I also worked a full 40 hours this week, though had to come home for a quick nap this morning and take another when I got home this evening. I was also very itchy when I went to bed last night and woke up several times this last week with terrible leg pains. I have had a recurrence of canker sores and also frequent pimple-like sores that linger for weeks. These symptoms are typical of MPDs.

I also have an appointment with my hematologist on Wed and hopefully will get some direction on where we go from here. Not sure how much longer I can keep up these transfusions before I get iron overload or some other complication. (Interestingly, Marilyn is low on iron and will get extra through IV on Sept 1.) Maybe it is time to get on with the BMT. Certainly there will be a barrage of tests to check my health and the condition of my bone marrow.

Friday, August 11, 2006

Another transfusion

As expected, I needed another blood transfusion this week. After getting back from the lake on Monday and feeling drug out, I went for a blood test on Tuesday, a day early. My Hgb was at 8.5 so I was back in on Wed for 2 units of "red blood cells, leuko reduced and irradiated", the typical fare. My white cells and platelets were essentially unchanged in the normal ranges.

If the previous paragraph sounds familiar, it is. Identical to two weeks ago though I was not tired on Thursday and logged a full 40 hrs (including 8 hrs vacation) for the week. As before, it does not appear that the Rituxan is working, but have another 2 weeks before discussing a possible BMT with my doctor.

Like two weeks ago, I am also working more on the cars. Replaced the battery in the van last night and plan to replace rear struts on the Malibu tomorrow. I did replace the front struts two weekends ago and will get a full 4-wheel alignment after this.

I visited my mother at the nursing home on Wed and again tonight. She still has a bladder infection, but is progressing with physical therapy. My sister and I played Scrabble with her, but she beat us after 5 rounds.

Thursday, August 03, 2006

Cycle Continues

Not much to write today, except for status on blood counts. Hgb is back down to 9.3 again, same as it was two weeks ago. After the blood transfusion, it probably went up to about 10.3 and then dropped a point during the week. A very typical cycle. I could have scheduled a blood transfusion for Friday, but planned to go to the lake cabin again, so that's what I am doing. When I get back on Monday, I will have my blood cross matched for a transfusion, probably on Wednesday.

My other blood factors remain about the same in normal ranges and prescriptions are same as well. Seems like just another week closer to a decision on a bone marrow transplant. Not sure how long I can keep up this cycle of transfusions, but while I do, the risks of a BMT increase.

Friday, July 28, 2006

Another transfusion

As expected, I needed another blood transfusion this week. After getting back from the lake on Monday and feeling drug out, I went for a blood test on Tuesday, a day early. My Hgb was at 8.5 so I was back in on Wed for 2 units of "red blood cells, leuko reduced and irradiated", the typical fare. My white cells and platelets were essentially unchanged in the normal ranges. I did not have my blood clotting checked, but will next week.

I went back to work 4 hours after the transfusion, but then on Thurs after lunch, I felt tired and went home to bed for the afternoon. Today, I felt fine and worked 9 hours. Tomorrow, I need to work on the 97 Malibu's front suspension which appears to have broken a spring.

Overall, it does not appear that the Rituxan is working, but will give it another 4 weeks before discussing a possible BMT.

I visited my mother at the nursing home on Wed and Thurs nights. She now has a bladder infection, but seemed to be more alert last night. When I got there, she was getting a shower and then stayed up until 9 pm with me while we watched "America's got talent" on TV. I did not make it there this evening, but instead got Marilyn's computer data recovered from her burned out eMac. That's another story that I plan to put on my neglected Njerd blog.

Sunday, July 23, 2006

Fish Biting - Clouds

Andrew and I have been at the cabin on Grace Lake near Bemidji since Friday night. Planned to go back home on Monday, but may be tempted to stay a while. Temperature was near 80 yesterday and made it to about 87 today in the shade. I took the thermometer down to the lake where the water temp was at least 79 and the temp in the sun was close to 100.

The fish were biting, but I was not fishing. I think the crappies and sun fish in the lake have been cross-bred with pirrahna. When I walk into the lake, they swarm around me. If I stand still they try to nibble on my lake shoes, swim trunks and a dark growth on my shin. When I float in the inner tube, they try to bite the moles on my back. If I float on my front, they will "nibble my nipples". They are pestier than any of the flys. Thankfully, I have not seen a mosquito. Must be too dry.

We have a rubber raft that works ok to put something between my body and the fish, but it was too windy today. I quickly became winded trying to paddle against the wind just to stay in front of the cabin. Then I thought of a solution. We have springy steel and wicker style recliner. When on the porch, it springs back so far, it is almost impossible to get out of. But when placed in about a foot of lake water, it works beautifully. The waves cause it to bob up and down, scaring away the fish and continously splashing water to keep me cool. I placed it under the white birches that overhang the lake and provide shade.

So where do the clouds come in? While cooling off in the lake, I looked up to the heavens and saw several types of clouds. Low in the sky were the cumulus clouds which seem to be constantly changing and could develop into cumulonimbus storm clouds. Just like troubles in our lives, these tend to block out the sun for a while and may develop into bigger storms. But high in the sky were some cirrus clouds at 20,000 feet or higher. These wispy clouds generally occur in fair weather and appear to me as angel's wings, showing God's grace and protection above all of my troubles. Also when next to the lake and when driving here through some wide open farm country, I could see the clouds for miles. There may be a cloud above my head blocking the sun, but not too far away, I can see the sunshine. Quite a change in weather from my "Son Shine" post of Feb 19.

Wednesday, July 19, 2006

Delayed Status

Sorry that it has been 11 days since the last entry, but life has been slow. The Summer is half over and we are half-baked with about a full week of 90+ degree weather. It was actually 100 on our thermometer a couple of days. We finally got about an inch of rain and temperatures back in the 70s. Forecast looks more moderate for the weekend when Andrew and I will be up at the cabin. I pick him up from Bible camp on Friday and we head up to stay until Monday.

My energy is marginal for the weekend since my hemoglobin was 9.3 today, not quite low enough for a blood transfusion which I certainly will need next week. It only has been 13 days since the last transfusion and my Hgb only dropped from 10.0 last week. Maybe the Rituxan is taking effect and next week will be a good indication. My other counts are in the normal range with white cells at 4.9 and platelets at 436. Last week, my clotting Factor 2 was right on target at 20 so I am not getting it checked every week.

Since I reported on July 5, my mother has been moved to a nursing home and is doing well. She is now getting around some with a walker and had the catheter removed today. We played Scrabble Friday night and went to the chapel service on Sunday morning. When I left this evening she prayed for many people by name, mentioning facts in their lifes that we had discussed recently. May God bless her and give us some more time to enjoy her company.

Saturday, July 08, 2006

Well with my soul

Marilyn and I are at the lake cabin. The moon is just rising in the East even as the sun is setting in the West. It is almost full and looks like it will be a clear evening to enjoy it reflecting off of Grace Lake. It has been a beautiful though hot day, close to 90 degrees, but will be back down to about 60 over night.

We have Anna's old iBook laptop with all kinds of music, video and podcasts stored in iTunes. One podcast from the Speaking of Faith public radio show caught my eye. I fired it up and we both were truly blessed. It was a interview with the late singer and educator Joe Carter, an expert on the African American Spiritual. He explains the origin of the spirituals and sings many of them.

He tells a story about Elijah and a woman who's son had died. When he asked her "How is it with thee?", she answered, "It is well with my soul!" He said that this is typical of especially older people who really have faith. This reminded me of my mother, though with all that she has been through in the last couple of weeks, does not complain. She sets a good example for me, reminding me that all that matters is the condition of my soul.

If you wish to listen to this podcast, you can download it to your PC at the Speaking of Faith web site. You can also listen to his music directly on line.

Wednesday, July 05, 2006

Blood Needed - Mom OK

I was in for my third Rituxan IV this morning at 7:30 am. Finished at 11:30 and was back to a meeting at work by noon. Worked two hours through VPN network this morning and six this afternoon. My weekly bloodtest showed an Hgb level of 9.1. It was 8.2 last Wednesday causing me to have a blood transfusion last Friday. It may have dropped to 7.8 or less by Friday and possibly increased to about 10 after the transfusion. Anyway, I will have another blood transfusion tomorrow, making it the shortest time (six days) between transfusions, not considering when I received 4 units over 1 to 2 days in the hospital. Each transfusion is normally 2 units, making this 35 total units over 17 transfusions since June 2004. Trying to keep the average Hgb higher, especially since I would like to go to the lake cabin on Friday.

While I was getting my IV, my mother was getting a stent put into her right carotid artery. Everything worked out OK and they even were able to retrieve the remainder of the old clot during the procedure. Thank God for an answer to prayers. I am heading out to visit her right after posting this blog entry.

Friday, June 30, 2006

Wild Wednesday

I was in for my Rituxan IV on Wednesday. It only took 4 hours, from 12 noon to 4 pm, since I had no reaction last week and they speeded it up. My blood test before the IV showed that my Hgb had dropped to 8.2, from 9.6 last week, so I also had 2 units of blood this morning. My white cells were 3.7 (just a little low) and platelets were 503 ( a little high and exactly the same as last week).

What made Wednesday wild was that both my mother and mother-in-law were in the hospital at the same time as I was. My mother-in-law was just coming home on Wed afternoon, but my mother was admitted after being taken to the emergency room on Tuesday night. She had a mini-stroke and lost a little control of her left hand. They discovered a blockage in her right carotid artery to her brain by using a CT scan. They did an angiogram on Wednesday afternoon and would have put a stent in, but discovered a large blood clot that was in danger of moving to the brain. Instead they gave her Plavix and heparin to reduce clotting and try to dissolve the clot. We discussed my blood clotting problems with the Doctor who did not think there was a connection.

My sister and I were visiting with her early Wednesday evening when she started to have difficulty speaking and yawned deeply. Her blood pressure dropped quickly and she passed out. This was shortly after 7 pm in the middle of a nursing shift change so she received plenty of quick attention. My other sister and older brother showed up just as this was happening. We thought that this was the big one and were prepared for her death. She was prepared as well and has mentioned frequently that she has had a good 88 years and is ready for heaven to join my father who died 2 1/2 years ago.

But God had a different plan. The drop in blood pressure was due to bleeding into her abdomen. Possibly the blood was too thin or the femoral artery was damaged during the angiogram when they ran a catheter from her groin up to her neck. Anyway, they gave her five units of blood and reversed the blood thinning drugs. By 11 pm when I left she was talking and moving fingers and toes. A CT scan showed that there was no stroke, but are concerned because of the possibility of more clotting. I saw her again at noon today after my blood transfusion and she is eating and talking fine. They are planning to try the stent again next week, but say she is a time bomb waiting to go off. God’s plan did allow my younger brother time to get here and visit with her some over the past two days. It also has allowed us more time to discuss what life care directives should be used in a situation like this.

Thursday, June 22, 2006

Rituxan & Purgatory

I had my first Rituxan IV treatment on Wednesday, starting early at about 8 am and finishing about 1 pm. They took it slower this first time and indicate it will speeded up next time. They started earlier than originally scheduled since they wanted more time to observe me, but observed me less than I normally get during a blood transfusion. The nurse took my blood pressure before starting, but that was all for the duration of the treatment. No temperature or any other follow-up. During a blood transfusion, my vitals are checked at least three times for each unit of blood. Actually, I was in a chemotherapy room with at least 12 patients and about 4 nurses. Observation was probably visual while asking me frequently if everything was OK. After the initial introduction of Rituxan, there is probably less risk of reaction than with blood from different people each time.

Before the IV, I also had my weekly blood test. My platelets were 503 and white cells were 4.4, both improvements since last week. My Hgb has dropped some more to 9.6, probably indicating another transfusion will be needed next week.

On a sad note, I attended the funeral of a co-worker that died of lung cancer last Sunday. He was 62 last Thursday, had worked for our company for 39 years and was taking early retirement at the end of this month. Over the past year, my office was close to his and we talked at least once a week, though his work time was very sparse since the first of the year. We often reminisced about the all the changes in computer technology over the years.

He had not been to work for three months and I had last called him at home almost two months ago. Thinking back, I wish I had been a better witness to him though I did direct him to this blog. He had a Catholic funeral mass this morning with very good attendance. Very little eulogy by the priest and an emphasis on baptism and communion as guarantee of eternal life. Made me remember childhood arguments with our Catholic neighbors about Purgatory though there was no mention of that at the funeral today. I am just thankful to be saved by the grace of God through Christ’s death and resurrection without needing to depend on others to speed my passage through the torment of purgatory.

Saturday, June 17, 2006

More Rituxan Info

In researching background materials relative to my upcoming Rituxan treatment, I came across a great web site, named CLL Topics, covering CLL (Chronic Lymphocytic Leukemia) but also has information about Stem Cell Transplants and Rituxan treatments. It also has warnings about the Procrit that I have been taking for the last ten months. Please note that a lot of this relates to patients with leukemia or tumors, neither of which I have. My white cell count was back down to 5.3 billion per liter last week where the normal range is 4 to 11.

My main problem now is AIHA (Auto-Immune Hemolytic Anemia) that is requiring my frequent blood transfusions. The article that brought me this web site included Rituxan treatment for AIHA, plus also describes previous treatments of prednisone and IgG that I have had. Easier reading than most of this stuff if you are interested.

My Rituxan treatment starts Wednesday at 7:30 am. It was originally scheduled at noon, but they wanted more time to observe me before letting me go home. I may be there all day.

Wednesday, June 14, 2006

Good week

It has been a good week after a little vacation at the lake cabin near Bemidji. Went up Saturday and came back on Monday, missing the traffic. Beautiful evenings with the full moon over the lake. We beat back the lawn and weeds with surprisingly no mosquitos or wood ticks to bother us. Though it was cold with a high of about 65 degrees, the water temperature was 70 and I took a quick dip to wash up on Monday morning.

My blood test yesterday was pretty good as well. My hgb was still up at 10.8 and my platelets had reduced to 643. White cells and Factor 2 were in normal ranges. I talked with the doctor today and will be scheduling the Rituxan IV treatments for 4 weeks starting next week. I have read a little about it, noting about a 40% success rate with a small study for anemia at Mayo Clinic. It has been used with 730,000 patients over 8 years, but a few have had fatal reactions during the first dose. I have a good history of no allergic reactions to medications yet, so it is worth a try. Your prayers are appreciated.

Wednesday, June 07, 2006


I saw my hematologist today and received a couple of surprises. First, my Hgb was 11.5, the highest that I have recorded. Unfortunately, my platelets were also the highest at 1050, up from 359 just last Friday. White cells and Factor 2 for clotting have remained unchanged. So I need to increase my anagrelide which I just reduced on Friday as well. It is very surprising that the platelets would increase so fast, but may be affected some by the Levaquin antibiotic that I am still taking for the pneumonia.

The doctor also said he has one more thing to try, Rituxan, which is normally used to treat non-Hodgkins Lymphoma. Seems like there has been some success for treatment of autoimmune hemolytic anemia (AIHA) as well. He is still waiting for more blood tests taken today before moving ahead, maybe next week. If Rituxan does not work, a BMT in the September timeframe is the next alternative. I am investigating further.

Friday, June 02, 2006

Last IgG

Since my last entry on Wed, I worked for 5 hrs on Thursday before getting tired. I came home for a nap and then spent a couple of hours cleaning maple spinner seeds out of the gutters and front lawn. I did not feel too bad though did not sleep very well last night. This morning I was up at 5:30am and the day hospital by 7:30am. I had both an IgG IV and two units of blood while getting in a couple of hours of work remote using my laptop. Would have done more, but did not have much to work on. Not much activity at work either on a Friday afternoon.

My blood analysis was all positive today. White cell count was down to 8100 from 26000 on Sunday. Hgb was surprisingly at 8.7 before the transfusion so should be 10.5 or more now. It was 8.4 on Wed, but may have been diluted by all the fluids they were dripping in me. My platelets were down to 259, right in middle of normal range of 150 to 450.

My hematologist stopped by at noon for a quick visit. Anyway, he said that the IgG seemed to be ineffective since I was now having transfusions every two weeks. So no more IgG. Also since my platelets are back under control, he reduced the Anagrelide to one .5mg pill a day. This essentially puts me back to January when we started experimenting with Prednisone, variations on the AG and IgG. Only difference is Levaquin antibiotic I take for the next week. I have a monthly appt with him next Wed when we will regroup and decide what to do next.

It was also great to have my sister and mother stop by for a short visit after lunch to break up the monotony. It was another 9 hour day watching drips after 72 hours of the same earlier this week.

Wednesday, May 31, 2006

Home again

I just got home from the hospital. Marilyn picked me up about 4:15 and we stopped by McDonald's for a Flurry. First thing I did when I got home was to water my bushes. All of the storms on Memorial Day missed us here though maybe we will now get some rain tonight.

On the health front, my temp is 98.6. It was 101.8 early this morning, but reduced by Tylenol to 99 by 11am. White cell count was down to 11,000 from 26,000 on Sunday. I am on an oral antibiotic to finish off the pneumonia. My Hgb was down to 8.4 and the hospital doc thought they would give me blood this afternoon. He was surprised when I said no, because it would take at least a day to get a blood match. Then they were going to do it Thurs PM after my IgG IV in the morning. I then called the Hematologist office and they postponed it all until Friday.

I connected my computer to the office and worked about 3 hrs remote today. If I feel ok in the morning, I will go into work. If get tired, I will come home for a nap and possibly work more remote later. Of course, I can work from the day hospital on Friday as well, to minimize taking sick leave. Seems like I always get sick on a weekend or holiday, but that does minimize using sick leave. Actually, if I take more than 3 days sick leave spanning before and after a holiday, the holiday is counted as sick leave as well. That happened to me over Thanksgiving back in 2004.

Tuesday, May 30, 2006


The detour is more complicated than I suspected though it was a good idea to stay home and not travel. After helping Anna move on Saturday, I felt a sore throat starting. Sunday morning, I could hardly speak. Went back to bed and by noon, I had the chills and a temperature of 101.5. When it reached 102.8, we called the triage center and headed for the emergency room. Temp peaked at 103 before they started antibiotics. Xray and CT Scan showed that I had pneumonia, but no blood clots. My Hgb was 10 and white cells were 26000. I have gone through a couple of days of antibiotics and cycles of chills and sweats, but feel pretty good at the moment. But then just 4 hours ago, my temp was back up to 101.8 but just now was 100. I may have a few more cycles of temperature swings before this is over. Doctors just breezed through as well, said I would go on an oral antibiotic and that I could probably go home tomorrow. I told Marilyn that she should know I was sick since I had not been on a computer for two whole days.

Friday, May 26, 2006


While I had planned to travel to my childhood home in Michigan this weekend, I have decided to stay here in Minneapolis. Last night, I attended a 3 1/2 hour high school band and choir concert including an awards ceremony and ice cream social. While seated in the cramped auditorium seat, I felt a few pains in my legs. Later at home I felt a little pain in my chest. During the night, I woke up with terrible cramps in my legs. After a trip back from Boston last year, I felt the same way and another blood clot was discovered in my lung. While I don't feel too bad at the moment, I decided it was best to avoid driving 7-8 hours and stay near my medical support.

There is a lot happening around here this weekend as well. I will miss the fellowship with my mother and siblings, but will enjoy being with my wife, son, daughter and friends. Besides, it is our 35th wedding anniversary on Monday.

While sitting here, watching the TV and cruising the internet, I happened upon a page of the Urban Network Gospel News where there was a clip playing of Bishops Joel Trout's sermon titled "Detours". You can listen to this sermon plus others here.

No matter how you plan your trip through life, you have to take the detours. What seems like a detour for you is God's planned route for your life. It is in the detours that you find God.

Wednesday, May 24, 2006

Don't Do That!

There is an old joke by Henny Youngman that goes:
The patient says "Doctor, it hurts when I do this." "Then don't do that!"

That's essentially what the neurosurgeon told me today after looking at the MRI of my neck. I have numbness in my neck since back in March. He looked at the MRI, said that he did see arthritis bone spurs, but did not see any that could be causing the numbness. Since it only goes numb in certain positions, he suggested that I avoid those positions.

You may remember that my hematologist thought it was shingles back on March 29. Then I saw an orthopedist on April 13th that said he could not do anything about the arthritis in my knees and that he didn't do necks. The orthopedist could have used another one of Henny's jokes:
"Doctor, my leg hurts. What can I do?" The doctor says "Limp!"

I think both doctor's are not going to do any elective surgery because of my blood clotting problems. Both problems are minor annoyances compared to bigger blood problems.

My hematologist said I don't need another blood test this week and can travel to Michigan this weekend. Just have to get out and stretch every 90 minutes. Next appointment is June 1 for another IgG.

Monday, May 22, 2006

More blood

I had another blood transfusion this morning, starting at 7 am. It went pretty quick so that I made it to a luncheon at 11:30, part of a conference where I spent the afternoon. A blood test before the transfusion showed that my Hgb was 8.2, higher than I thought it might be. I also found out that my Hgb was actually 8.9 on Thursday, not the 8.4 that I had been told. With two units of blood, it should be over 10 by now. I am supposed to have another blood test on Thursday and will then decide what I do this weekend. I would like to travel to Michigan with my mother and the rest of my brothers and sisters over Memorial Day.

Thursday, May 18, 2006

Rewind two weeks

Well, I am right back to where I was two weeks ago. Had an IgG IV today, but the blood test showed my Hgb was down to 8.4. Exactly two weeks ago I had an IgG IV and Hgb was 8.2. So today they took more blood to test and I have to go in tomorrow to give more blood for a cross match. I will back in at 7am Monday for more blood. Not sure on the other blood factors, but no one has instructed me to change medications. Doesn't seem like this IgG is helping any.

I have now had 14 transfusions, 29 units of blood on an average for every 32 days in the last year. Average this year is every 22 days. Shortest time between transfusions was 12 days in September, then the longest was 112 days from then until January. I had just started Procrit in August so it probably just started working in September and may now have lost its effectiveness.

What's next? Maybe a BMT.

Thursday, May 11, 2006

Hgb back up

Well, I had a blood transfusion on Monday and a blood test today. My Hgb is back up to 10.5 and my platelets are 446 (holding steady). Since my Hgb was 8.2 last Thursday and it would have dropped further during the 4 days before my transfusion, it appears that the IgG is working. The two units of blood should have raised the Hgb about two points. It will be interesting to see what it is next week before I get some more IgG.

I also had a birthday, turning 58 on Tuesday. I am thankful for all the cards and gifts that I received, but primarily that I am still with all of you 18 months after my initial blood clot in November, 2004. Thanks for all of your support over that time as well.

Thursday, May 04, 2006

IgG but blood still needed

I was in for another IgG IV today and also had a blood test. Turns out my Hgb was down to 8.2 so need to go back tomorrow for blood typing and have another blood transfusion on Monday. My platelets were now down to 441 which is within the normal range. My Factor 2 for clotting was 28, a little high so had to take extra coumadin tonight. The IgG along with low Hgb made me so tired that I went home and took a three hour nap.

I was able to work on my laptop through the wireless network at the day hospital so only took 1/2 day of sick time. Over the past 12 months, I have taken about 130 hours of sick time. This has been minimized only by working 9 or more hours on days that I did not have a medical appointment.

I have kept a log of all medical events over the last several years. The log has 147 entries. I had 70 entries for all of last year and already have had 40 so far this year. While I cannot complain about a lot of pain and generally feel good, I am getting tired of an average of 2.5 appointments per week.

Friday, April 28, 2006

Positive results

The results of my blood tests yesterday show that my Hgb is up to 10.1, my platelets are down to 513 and my Factor 2 is 23%. All of this is positive. My Hgb was 9.7 last week just before my IgG IV so that may be taking effect. There are no changes in my medications this week, but I expect my Anagrelide will be reduced back to its original level when the platelets drop even lower. I am scheduled for another IgG IV next Thursday and every two weeks so hope to see Hgb going up some more.

It was an interesting visit with my doctor. He had a med student into observe and was explaining my medical history, demonstrating some of the checkup techniques, examining my color, listening to my heart, checking my spleen, etc. When the med student finally felt my spleen, after several trys, she was thrilled because this was her first.

The doctor also described my condition as a Coombs' positive auto-immune hemolytic anemia and then included my other complications. He also explained that my JAK2, analyzed by Mayo Clinic, was negative. He stated that my MPD was like ET (essential thrombocythemia) and downplayed the MDS that Mayo had highlighted a year ago. It is unclear whether a negative JAK2 is good or bad. I don't have that gene mutation, but then may not be able benefit from treatment that comes from further research related to it. Anyway, it was an interesting discussion between the doctor and the med student who could ask more intelligent questions that I could.

Sunday, April 23, 2006

Amazing Grace

Most of us are familiar with the words of the song "Amazing Grace", written by John Newton in the late 1700's. Robert Schuller, Jr. used the story of John Newton as a sermon illustration this morning. After listening to Schuller, I did a Google search and learned more about John Newton and the song. It was interesting to learn that the song has been modified over the years and that the original words had a special meaning to me in these times. The last two "original" verses that I had not seen before are:

Yes, when this flesh and heart shall fail,
And mortal life shall cease;
I shall possess, within the veil,
A life of joy and peace.

The earth shall soon dissolve like snow,
The sun forbear to shine;
But God, who call’d me here below,
Will be forever mine.

Friday, April 21, 2006

King's move 2

Just a note that the sermon illustration about the "King having another move" can now be found on the Redeemer Lutheran Church's message audio page. Click on one of the audio links for the April 16th sermon on Hope by Pastor John Niewald. The "King's move" starts about 2/3 through the sermon, but the whole sermon is worth listening to. The sermon started out with the playing of a video about Jason McElwain, an autistic teenage basketball benchwarmer who hit six three-pointers in the final four minutes of his last high school game.

Thursday, April 20, 2006


Dr. Tony Evans has an inspiration spot titled "The Alternative View" which aired on KTIS radio this morning (April 20). He used the analogy of developing photographs to what good can come out of negative tough times in your life. Some people, especially professionals, still use photographic film where a picture is captured as a negative. The developer takes the film negatives into darkroom where through a process that most of us do not understand, converts the negative into a positive multicolored image. In a similar way. God can take our negatives, and in a way which we do not understand , turn them into positives.

Today, I was in the day hospital for the IgG IV which took about 4 hours. They speeded it up from last time and I was able to work again while watching it drip. The effect of the Benadryl and probably the IV made me tired out so I came home and slept for 3 hours. I started out the day with a dentist appointment and also was out part of yesterday for an MRI of my neck. The MRI showed some degeneration which I need to review with a neurosurgeon. Actually, my neck is not hurting that much any more so I am not in a big hurry to see another doctor.

Monday, April 17, 2006

King's move

My schedule for the week changed this morning when I was able to get in for my blood transfusion. The MRI for my neck switched to Wed and the IgG IV to Thursday. I also have a dentist appointment on Thurs at 7am to make it four related medical appointments for the week, just like last week. A blood test before the transfusion this morning confirmed a drop in my Hgb to 7.9, but should be pushed back up to close to 10 by now. The increase in my anagrelide is helping to lower my platelets back to about 600, but also gives me a little heart pain, one of its side effects. Once it gets down below 400, I will return to my original level of anagrelide that was fine for six months.

With all this time spent away from work, I have arranged to telecommute from the hospital. Dr gave me a note saying that it was ok, both for my health and the day hospital, for me to work during my transfusions. I connected my laptop wirelessly through the U of MN network into our company network and telecommuted a couple of hours today. I would have done more, but the Benadryl they gave me with the transfusion made me sleepy. I came home afterwards and took a two hour nap.

So how does all this relate to the "King's move"? Yesterday, I made it to our church Easter service (before driving to Rochester to visit my mother-in-law and then stopping by my sister's place for dinner with my mother and other relatives). The pastor's sermon illustration was about a painting titled "Checkmate" that was on display in an art gallery. A master chess player examining the chess pieces noted that it was not a checkmate since "The king had another move". The pastor related this back to Moses at the Red Sea, Daniel in the lion's den, David facing Goliath and Christ dieing on the cross. In each case, the "King" had another move. In my case as well, I believe the King has many more moves to make and even when I face death, like we all will, he will have one more move. "For God so loved the world that he gave his only begotten Son, that whoever believes in him shall not perish but have eternal life." John 3:16

Friday, April 14, 2006

More blood needed

While I was at local med center for my neck today, I got a quick finger prick blood check. My Hgb was down more to 8.2. Since it was 9.0 on Tuesday, it will probably be down to 7.5 by Monday. They faxed the results to my hematologist. We arranged for a blood type cross and match at an open Univ clinic on Saturday afternoon so that the blood bank can get me some blood for transfusion early next week.

I am now scheduled for transfusion on Tuesday, but wait listed for Monday. May end up with conflict and need to reschedule MRI. I had planned to drive to Rochester and visit my mother-in-law on Saturday, but will now stay in Minneapolis for the weekend.

Don't do necks

Well after living with my achy neck for three weeks, I thought I might get some relief. Hematologist referred me to orthopedist since I have had more knee and neck pain. I saw U of MN orthopedist yesterday. Nurse had me put on bright red shorts during x-rays of my knees. She joked that patients don't walk out with them anymore.

When Dr came in and saw my blood results, he said there was nothing to be done. Scared him away and no potential for expensive knee replacement. He said they could give me a cortisone shot in my knee, but I don't let it get that bad. I suppose if I did overwork it and it got inflamed and swollen, that might be an option. But my big disappointment was that he did not do necks. Would not even look at it. Referred me to another Dr in the same who could not see me until May 31 since I was a new patient. I told them I had neck pain for over 3 weeks already, would not wait that long and walked out.

I came back to my office and called my family doctor. I thought it might be good time to get a general practitioner to review what I was going through and see if my records were being sent back there as well. I had an appointment this afternoon and noted that they were up-to-date with medical reports sent from the Univ Med Center. I now have an MRI of my neck scheduled on Monday. Maybe I need some therapy which I could get locally. Getting tired of going to appointments; third time this week, week is not over and not looking better next week.

Tuesday, April 11, 2006

Spring Ahead

We switched our clocks ahead a little over a week ago, but I feel like I am falling back. I did have an IgG IV last Friday while spending seven hours at the Day Hospital. I think the dose of 55 mg was 1/4 of what I received in the hospital over the weekend of March 11. I had also resumed my previous Anagrelide dose of .5 mg per day. But the results of my blood test today show my Hgb is down further to 9.0 and my platelets have increased further to 931. My Factor 2 results have not come in yet. I can sense the drop in Hgb since I get winded quicker, though still managed to work a couple of hours in the yard last weekend.

Dr has now adjusted my Anagrelide to 1 mg per day, back to my original level in September, last year. At that time we had to reduce it within two weeks because it was causing me headaches and a pounding pulse. My Hgb also dropped to 6.4 at the time, requiring a third blood transfusion within 5 weeks. That might have been a result of the Hydroxyurea that I had been taking since my Hgb then held steady for over 3 months. It will be interesting to see what happens in the next week. Haven't I seen this movie before?

But on the bright side, Spring is here. It was sunny and 79 degrees yesterday and still is 70 today, though rain is threatening. There are pros and cons of having my medical care at the University. During these Spring days, all of the students shed their winter clothes and become more active. There are joggers, roller bladers and bicyclists. Not sure if it makes me feel younger or older to share the streets with all this energy around me. I guess I do tend to suck it in and walk a little more briskly. Have to watch more carefully where I drive as well. It is certainly a diversion from sitting around the office.

Wednesday, April 05, 2006

More IgG

I was in for blood test yesterday and saw the Dr this morning. My Hgb was down to 9.7 and my platelets were up to 907, proving that reducing the Anegrelide did more harm and questionable good. I am now back to my original prescription of .5 mg per day. Also since my Hgb is starting to drop, I will get more IgG on Friday. Dr plans to repeat IgG every two weeks over the next three months while monitoring the results. My Factor 2 was also still up at 37, out of the target range of 15-25, so my Coumadin is being adjusted as well. While Drs do not think there is a connection between these three medications, my bet is that my Factor 2 will be below 15 next week and we will be adjusting that again as well.

Psalm 6:2
Be merciful to me, LORD, for I am faint; O LORD, heal me, for my bones are in agony.

I mentioned before that my arthritis has been acting up again since I quit the Prednisone. My right knee locks up some times, especially when I roll over in bed and bend my knees to avoid the twist from my feet. I have completed the week dose of Acyclovir for my "emerging" shingles with no change to the ache, numbness and warmth in my neck. The Dr thinks that the "bumps" on my neck possibly from shingles have disappeared, but I haven't noticed any difference. So next week I see an orthopedist to have a look at both problems. I am also allowed to again take Aleve which seems to help the arthritis pain somewhat better that Tylenol.

It is a little frustrating to still not have a solution to my problem, but I am encouraged that the IgG seems to work and look forward to getting more energy from a higher Hgb level.

Saturday, April 01, 2006

God will make a way

While resting in bed this morning, I was listening to a playlist from my iTunes library. I have a couple playlists that I go to sleep with, never seeming to make it past the first few songs before I am asleep. This playlist starts with "The Lord's Prayer" by the Statler Brothers. Anyway, the second song had special meaning this morning. It is "God will make a way", sung by Janet Paschal, who incidently has struggled with cancer over the past year. I first heard Janet sing this song on one of the Gaither's televised concerts and then downloaded it from the Apple iTunes music store sometime last year.

The complete lyrics and song by Don Moen can be found here.

God will make a way,
Where there seems to be no way
He works in ways we cannot see
He will make a way for me

May he make a way for you as well.

Wednesday, March 29, 2006


I saw the Dr today and reported that while I was feeling more energetic, I was also getting more aches and pains. My hgb was 10.1, down a little from the 10.6 last week, but no reason for more blood or IgG. Dr not sure if hgb improvement due to IgG or reduced Anagrelide, so will get blood checked every week. My platelets were up more to 655 today and Factor 2 was 35 so my Coumadin was increased a little to compensate.

My joints have been achy since I quit the Prednisone last week. My right knee is especially bad, sometimes too stiff to bend. It also was my life saver 18 months ago when I was supposed to have it replaced. The preop physical was when my anemia and shortness of breath was first noticed.

But the right side of my neck has been achy, numb and warm recently. I thought it was just more arthritis, but Dr thinks it may be shingles, herpes zoster. He also noticed some bumps that might be a start of the shingles blisters. He prescribed Acyclovir, 800 mg 5x per day, for the next week to try and knock it out. I hope it does, because I had shingles on one side of my back in the early 70's while in grad school. That was one of the most miserable experiences of my life.

Stay tuned for the next episode, hopefully not before next Tuesday's blood test.

Wednesday, March 22, 2006

Improvement Continues

I was in for a blood test this morning and found out that my Hgb is now up to 10.6 from 10.4 last week. This is not a significant change, but great since it did not drop. The true test is next week when it may drop due to the IgG getting depleted. If so, I may need some more IgG or another blood transfusion. I also see the Dr then and get his opinion on what happens next.

My platelet count was also up to about 600 from 187 two weeks ago when I reduced the Anagrelide to every other day. Dr wants to watch that for another week before deciding what to do. He also decided to keep me on the Procrit so I am getting another 4 weeks of injections to take at home. I took my last Prednisone today. Had tapered down to 10 mg per day in the last week from initial dosage of 120 mg two months ago.

I am feeling pretty good and can tell that my Hgb is above 10.

Thursday, March 16, 2006

IgG Works

I was in for a blood test early this morning and got great news. My hgb was 10.4, probably the highest that it has been in over a year and up from the last measurement after my blood transfusions on Friday. I will getting it checked again next Wednesday. I thought that maybe it was about the same since on Monday and yesterday, I shoveled snow with little problem. But I was surprised that it had actually increased. Hallelujah!!

From "Our Daily Bread" for today:

The rarest [blood], AB-Negative, is found in only 1 in 167 people, or 0.6% of the population. ... "The rarest blood type is the one that's not there when you need it." There is another supply of blood that is one of a kind and always available to those who ask for it. First John 1:7 states, "The blood of Jesus Christ His Son cleanses us from all sin."

My blood is A-Negative which is found in only 6.3% of people. But then that number is reduced by the antigens C, D and E that I have in my blood. Thank God that Jesus' blood is available infinitely and to all. There is only one test for a match; just believe and accept the free gift.

Monday, March 13, 2006

Back from Hospital

I finished my ivIgG yesterday and drove home from the hospital. Marilyn drove to the hospital, but you know the "man" has to drive home. When I walked out to the car, it felt a little cold. I then remembered that I gave Andrew my jacket in the emergency room and he took it home.

Anyway, feeling much better today. Andrew and I shoveled about 10" of snow from the driveway. He did most of the heavy lifting, but I stayed with him shoveling the edges and cleaned off both cars. We then drove the van out the unplowed street and bought another shovel to replace one that disappeared this morning.

I changed my comments setup so that you should see any additions almost immediately. I had it set for my review and approval since Anna had received some nasty anti-Christian comments on hers. I need to have her show me how to delete comments if such occurs, though I may have a different setup with the special domain name.

Sunday, March 12, 2006

High Speed Internet

The drips continue, but I don't look at them as much. I got my laptop to work in high speed wireless mode through the University Hospital network. I had tried on Friday, failed and called the U help desk. Since it was late, they referred me to others twice and I never heard back.

This afternoon, I tried connecting to my office network and it worked for a while. The error message indicated they were working on some network stuff there, unless they thought I was a hacker and blocked me. Anyway, I then set the name server to the one that I use from home and everything worked. I ran my standard speed test and found that it was running at close to 10 Mbps, 2 to 3 times as fast as I get at home. I may have to come back here just for the fast internet. Really, it will make things much more tolerable when I come back for another transfusion.

The last bag of ivIgG (or IGIV) is just about through and then I can go home. I probably will take a few days vacation this week while both Marilyn and Andrew have spring break. Not sure when I will have a better time to use vacation later.

Drip, drip...

Still writing this from the hospital on Sunday, but looking to go home this afternoon. My first bag of ivIgG took 10 hours to go in and finished at 5 am this morning. I petitioned the Dr to send me home and have me come back on out-patient for the rest. But they still want to monitor me while they see how I react. So they started a second bag of 1800 ml at 10am and thought they could speed it up to finish in about 6 hours. The nurse has been increasing the speed periodically and it is now up to 300ml per hour. So I have now been here for about 58 hours watching the IV drip, drip, drip...

Looks like I missed the nice weekend and it may be snowing when we drive home this evening . Depending on how I feel, may have to shovel snow tomorrow morning and go to work . I will be back in every week for a blood check and will get more ivIgG when necessary. Nurse thinks this stuff cost $10,000 per bag so glad (hope) that the insurance is paying for it. At the current rate that is about 50 cents per drip.

Saturday, March 11, 2006

Immunoglobulin G

Well, I am still at the hospital and will be at least one more day. After 4 units of blood yesterday, my hgb only made it to 9.2. Last night, I had a slight fever and head ache. I still have a fever of 101. Latest idea is to give me intravenous immunoglobulin G (ivIgG). IgG is supposed to act as a decoy so that the immune system attacks it instead of the red blood cells. Will get some today and tomorrow and if I tolerate it ok, should get to go home tomorrow afternoon. I will need to get blood tests every week and then more blood and ivIgG probably in three weeks.

Friday, March 10, 2006

Emergency Room

Last night, I experienced some irregular and rapid heartbeats. Marilyn and Andrew took me to the emergency room at 12:30am where they wired me up and monitored me for a few hours. I witnessed an episode where my heartrate went from 88 beat per minute to 148 and back down in the space of a minute. I could sense it was happening and turned to see it on the monitor just in time.

My hemoglobin was also down to 5.9, the lowest that I have had. Since I was scheduled for a transfusion at 11:30am, they just checked me into the hospital and had blood flowing into me by 5:30am. After 2 units of blood, my hgb was up to 7.9. Since they had more blood typed for me, they gave me 2 more units which just finished. I expect my hgb will be up close to 10 which will be the highest in the past year. That will make it the lowest and highest all within the same day. They will monitor me over night and expect to let me go in the morning. No more rapid heartrate that I can sense, now that my hgb is back up. I should have all kinds of energy for the reat of the weekend, until the cycle starts all over.

This actually has been a blessing since it may get me on a cycle between 10 and 8 instead of between 9 and 7 ( or even lower). If the cycle is faster than every two weeks, it may be a factor in whether the BMT is warranted.

Keep looking up!

Wednesday, March 08, 2006

Reduce meds

I had my monthly appointment with hematologist today. My hemoglobin was 7.4 so I am scheduled for another blood transfusion on Friday. Since it seems like this may be a biweekly thing, we agreed that the threshold for transfusions would be raised to 9 rather than 8. This in effect will keep my hgb between 8 and 10, rather than 7 and 9. Like it doesn't cost any more to keep your gas tank full rather than empty, except in this case I will have more power.

My platelets were down to 186 from 397 two weeks ago. Factor 2 relative to blood clotting was down to 13 from 17. My blood pressure was higher as well. Summary, we are making a change in medications, cutting AG in half (affects platelets and maybe hgb), reduce coumadin (just tonight, affects Factor 2), taper off Prednisone over next two weeks (which did not seem to reduce anemia and may be responsible for high blood pressure) and stop Procrit after 2 weeks. Procrit has not seemed to improve hgb. I will have a blood test in two weeks and check with Dr.

We discussed the possibility of a BMT further. Dr feels that it is still not warranted yet; the risk is too high versus complications of continued blood transfusions. My spleen seems to have increased in size from cleaning up RBCs and my ferritin (iron) levels are going up as well. I may need some iron chelation treatment which is now available as another pill instead of a blood filtration process.

I am a little disappointed since I thought a BMT might be the magic pill to cure this, but with my age and blood clotting problems, the risk is elevated. There are also BMT complications of Graft versus Host Disease (GVHD) that could take several years to clear up. But it is certainly good to have an option if the blood counts drop even more.

Prayers are appreciated.

Sunday, March 05, 2006

Lesson in this

The last ten days, since my last transfusion, have been pretty good. Last weekend, I went shopping at Home Depot, Sam's and the Northtown Mall, walking all around these large stores. I also ushered at church on Ash Wednesday and worked 42.5 hours. Friday, I even applied for a higher level manager job at work. Yesterday, after visiting my sister, I cleaned a portion of the basement, sorting through some of my old computer stuff, even carrying old computers and heavy monitors around. But then, I am pushing myself, trying to be positive about my situation.

During all of this, I can sense my blood hemoglobin dropping. I can do less and less before breathing hard and having to take a short break. My blood pressure and heart rate are also increasing again. Another blood transfusion may be necessary in the next week. I have my next doctor appointment on Wednesday when hopefully we will determine whether a BMT is the next step.

Everyday, I read the "Our Daily Bread" devotional through the internet. It always has something that seems to speak to my situation. Recently, it has had a link to a Discovery Series titled: "Joseph: Overcoming Life's Challenges". One section titled "The lessons of life" starts out:

"On the old Happy Days television show, Richie Cunningham had just been "grounded for life" by his father, Howard, for misbehavior. As they talked about it, Howard asked his son, "Did you know that there is a lesson in this for you?" Richie's response was priceless: "I figured anything with this much pain had to have a lesson in it somewhere." That is real life! We do not learn character in times of ease and prosperity but in times of difficulty. The greatest lessons of life are often the product of our most serious heartaches."

Later on, the author states "Everything happens in our lives for a reason, and a great part of that reason is to help us grow in our faith." My trials over the past several years have certainly strengthened mine.

Isaiah 40:31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Thursday, February 23, 2006

Blood & Oxygen

Well, I had a blood transfusion today and feel somewhat better. When I got to the hospital at 11:30 am, they said they were not expecting me until tomorrow, but they did have the blood and worked me into their schedule. Another mix-up between the clinic on the first floor and the transfusion unit on the third floor, complicated by the blood bank being somewhere else. Seems like 48 hours should be plenty of time to get everything together. They started the transfusion about 1pm and I was home by 5:30 pm.

Yesterday, though I worked about 9 1/2 hours, I still realized that my hemoglobin was at one of its lowest levels ever. I knew it was below 7.5 from the day before. My wife asked me later whether having an oxygen tank would have helped. Possibly, but there are a number of factors involved and in my case, the low red blood cell count and low hemoglobin level is the driving factor. I am still affected by the blood clots in my lungs that reduce the blood flow. When I first experienced breathing problems back in November 2004, my local doctor thought it might be asthma, which would have affected the airflow. My hemoglobin was higher (11) at the time and oxygen helped overcome the reduced blood flow. They ruled out the asthma factor once the blood clots were discovered.

Another big factor is the level of oxygen in the air, typically about 21 percent. But that is not a pure number since it is affected by other air gases such as nitrogen and carbon dioxide and the humidity. For example, by the end of the church service last Sunday, I was short of breath and eager to get outside for some good air. (It may not be the sermon that puts the congregation to sleep! Just kidding, Pastor, but some more oxygen would help.) Also, this morning when taking a shower, I had problems breathing because of the humidity of the air. Check out the Occupational Hazards web site article, paragraph on the Respiratory System, for more details.