Transfusion #33

I didn't expect it to be so soon, but I had another transfusion yesterday (Tuesday). This makes the count 67 units of blood. I felt so tired Monday morning that I went home from work at 11am and took a 2 hour nap. I then called the clinic and got in that afternoon, a day early for my blood test and Aranesp shot. My Hgb was down to 9.0 so they got me in for a transfusion on Tuesday instead of Thursday. I felt like my hgb was even lower then and needed a nap this evening as well. It was 12 days since the last transfusion and the running average over last 4 times is now 10 days. As typical over the last couple of months, I made an appt for a transfusion for next week (Thursday) as well.

My other blood counts are normal.

BMT Planned

Well, I met with my U of MN doctor today and decided to plan the BMT for around May 1st. This will be the best for my family since I will spend the first 3 to 6 weeks in the hospital and then will need to be isolated at home for another 8 to 11 weeks. The first 100 days are the most critical while the new bone marrow takes hold and my immune system is restored. The doctor will contact the BMT Center and we will meet next on March 7.

My Hgb was 10.2 today so I can wait until next week for another blood transfusion. Next week will be wild with a dentist appt as well. I should work a little extra this week to compensate. I am thankful that I feel as good as I do right now and it seems strange that I am going ahead with the BMT. "Walking through the valley of the shadow of death" (Psalm 23:4) is taking on a whole new meaning.

Transfusion #32

I didn't expect it to be so soon, but I will have another transfusion tomorrow (Thursday). This will make the count 65 units of blood. When I went in for my blood test and Aranesp shot today, my Hgb was down to 9.4. On Monday at Mayo Clinic, it was 10.1 and I did not expect it to drop .6 in two days. I ended up in the same situation as last week where my Hgb could drop below 9 by the weekend. I could not chance making it to next week since Monday is a holiday again (Martin Luther Day). I already had an appointment for a transfusion scheduled for tomorrow; just did not think I would need to use it. I was scheduled for a transfusion last week as well and then did not need it. I cannot predict the next week and cannot guess what my Hgb is going to be when I get it checked. Probably another symptom of my failing bone marrow and time to address the problem with a BMT.

My other blood counts are normal.

Mayo Results

Well, it seems like I have been to Mecca. Got back from the Mayo Clinic in Rochester about an hour ago. After driving down this morning for a blood test at 10 am, I met with Dr. Alayew Tefferi about 3:30pm. I actually met with a med student from India for about 45 minutes while she reviewed my case and summarized it for the Dr. I spent only about 10 minutes with the Dr.

In summary, he cut right to the chase, saying that I was seeing him because he was THE expert. He said that I had chronic myeloid disease, a general term to cover all the variations of MPD and MDS. It does not matter what you call it since it eventually all leads to AML, acute myelocytic leukemia, when the bone marrow shuts down and all blood counts drop. Medicines and transfusions can reduce the symptoms but it is just a matter of time, maybe 5 years. He did say that my current marrow was not that critical, with less than 5% blasts (undeveloped cells). He looked me straight in the eye, with his hand on my knee and said "If you were my brother, I would recommend a BMT, sooner rather than later". He said my brother's marrow stem cells were the best option and if I delayed further that they should be harvested and frozen. As I was driving home, listening a classical music station on the radio, I stopped at the Trinity Lone Oak Church in Eagan for a stretch and a short prayer asking God to tell me what to do. Then I got to thinking. What better sign than one of the top (self-acclaimed) experts in the world telling me what he would tell his brother. Time to start planning in earnest.

Interestingly, my Hgb was still up at 10.1 today though still a typical drop of 1 point over the past week. Looks like I can delay a transfusion another week. I still need to go in for a Aranesp shot this week. Maybe that stuff is working though I am still working the chocolate milk theory.

Hgb - Chocolate Theory

Surprise, my hemoglobin was 11.1 today, the highest since last June when it hit 11.5. But at that time, it was after cutting my Anagrelide from 2 pills per day to 1. At that time my platelets also hit a high of 1050 which was not good. Within one week, I was back to 1.5 pills per day to get the platelets back down. I was still on Procrit at that time as well.

So what did I do different in the last week? Was it the eggnog, the turkey or the Aranesp? I had my second Aranesp shot last Tuesday, but then I had a little Hgb rise to 10.2 after Thanksgiving turkey as well. I also drank a gallon of chocolate milk last week and ate many helpings of chocolate candy. Chocolate seems like the best theory to me, so I will go have some more fudge.

Anyway, I do not need a transfusion this week and will be at Mayo Clinic on Monday. BMT decision time is getting closer.

iWoz vs I AM

I recently read the autobiography of Steve Wozniak titled "iWoz". Steve was the creator of the original Apple computer. You can read my review of the book on my technical blog njerd.blogspot.com

After reading the book, I realized that an autobiography is an "I was" story. Considering my health situation, I have started my own autobiography, not to publish, but as a legacy for my family and future generations. Believe me, it is difficult to do under the circumstances, but something I wish all of my ancestors had done. It is difficult to remember those early years, even the later years. But every time I work some more at it, I cannot help but think of the future. What is in store for me over the next year? Will I survive a BMT? If I do, what torture do I have to endure from GVHD (Graft vs Host Disease)? Why me?

Then I remembered what God told Moses in Exodus 3:14, "I am who I am" and that Moses was to tell the Israelites, "I AM has sent me to you". God says his name is "I AM", not "I WAS". God is the same yesterday, today and forever. I just need to remember that through my belief in His grace that "I am" forever as well. This body is just my earthly home though I would like to live here as long as possible.

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?

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.

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.

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.

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.

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.

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.

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.

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."

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.

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.

50+

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.

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 "Ilike2learn.com". 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.

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.