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.