Stem Cell Donation – Day 3

8-24-11

All did not go as anticipated today.

I wanted to get some exercise before it got sooo hot and still get to the MD Anderson Center for early appointments, so I walked the mile or so from the motel to the hospital.  This morning I finally met the hematologist who has been treating Paul, Dr. Partow Kebriaei.  I was favorably impressed with her knowledge and professionalism as she reviewed with me the results of the tests I had on Monday.  The good news was that my blood is completely normal and that I matched my brother perfectly.  The bad new was that my EKG was “abnormal.”

The abnormality was that the chart showed several PVCs – premature ventricular contractions.  That means that some of my heartbeats were initiated in the ventricles rather than in the sinoatrial lode where heartbeats normally begin,which reduces the efficiency of my circulation, but should not create any health risk.  I told Dr. Kebriaei that every EKG I have ever had showed the same thing, but I have still been able to run marathons, climb mountains and stay active and healthy.  Nevertheless, she wanted me to be examined by a cardiologist.

This is where the magic of a facility like MD Anderson is evident.  In the real world it would have taken days or weeks to get an appointment with a cardiologist.  Here, I was able to see Dr. Peter Kim two hours later and two floors below Dr. Kebriaei’s office.  He reviewed the EKG, performed an examination and found nothing to prevent me from continuing as the donor for my brother’s transplant.

Because of this diversion, the appointments that I was supposed to have tomorrow were rescheduled to the next day.  I am told that such change will not delay the actual procedure, so everything is still on track.

I finished the other meetings I had today and walked back to the motel.  The outdoor temperature had risen to 106 degrees by then.

My brother went through a number of tests today, and all went well for him.  We are one day closer to the donation, and one day closer to the transplant.

8-23-11

Stem Cell Donation – Day 2

Today was rough for my brother, “Paul,” but not for me.  The blood taken yesterday had to be tested to be certain I have no diseases that would prevent my acting as the stem cell donor.  I learn those results tomorrow.  Paul was back at the hospital today for a liver biopsy.  Under sedation, a doctor inserted a needle into his liver to obtain a sample to be analyzed. 

After taking Paul to the MD Anderson Center a little before 7:00 am, I decided to go jogging.  This was the 34th straight day that Houston’s temperature has exceeded 100 degrees and I wanted to run a few miles while it was only in the high 80s.  I have a belief that I should “train” in order to have my stem cells ready for what they need to do in a few days.  After Paul had recovered from the sedation, we drove to the airport to pick up his wife, Deb, who has been out of the state for several days.

My preparation actually began nearly four months ago when Paul was first diagnosed with myelofibrosis.  Though he had been exhibiting symptoms of the disease for many years, it is relatively rare and none of the doctors he has seen over the years recognized what it was.  It was only in May, when he was referred to the MD Anderson Center, that the diagnosis was made.

My method of training is not what I would expect a doctor to suggest.  First, I enlisted various people with whom I associate to pray for Paul and to remotely treat the condition with Reiki, an energetic healing system.  I had a feeling that he was going to need a bone marrow transplant, so I began researching what I would need to do to become a donor.  Quickly I learned the accepted guideline is that a person may serve as a donor up to age 60.  Even though I am slightly older than that, I felt I would be the best possible donor, especially since I have been practicing t’ai chi for more than 30 years and believe that doing so has strengthened my bone marrow.

The original plan was to treat Paul’s condition with  experimental medication, but it was soon evident that a stem cell transplant was the only thing that could cure him.  His health insurer finally approved the procedure – which costs some $300,000 – and age became a secondary consideration.  My other brother, Jim, and I were both tested by taking swabs from inside our cheeks to see if either of us would be an appropriate match (about a 30% chance of that occurring).  It turned out that we both matched (less than a 10% probability).  Since Jim is 4 years younger than me, he seemed the better choice.  However, when some other factors were examined, it turned out that I should be the one to donate.  I then had to give additional blood samples for further testing.

I immediately agreed to donate, a date was set and I stepped up my training.  I haven’t eaten meat for nearly 40 years, and leading up to the donation I quit eating refined sugar and reduced my dairy consumption.  I quit taking multivitamins because they contain so many things that end up in the blood stream and made absolutely certain that I did not take anything like aspirin, ibuprofen or Vitamin E that would act as a blood thinner.  I found reserch  showing that the stimulation of certain acupuncture points may increase the number of peripheral blood stem cells, so a week ago I received an acupuncture treatment from a friend who is a talented acupuncturist.

I think I am ready to donate, which is good because the time is getting close.

8-22-11

Today was the first day of the process at the hospital that is to lead up to them taking of my stem cells for the transplant.  My brother (whom I will call “Paul” because (a) that is not his real name and (b) I want to respect his privacy even on the internet) left Austin about 5:00 am and drove to Houston.  It was a pretty full day of tests and procedures.  I filled out forms, had an EKG and a chest x-ray, gave a urine sample and had 20 (!) vials of blood taken for testing.  I think some of them were actually to be given to a pet vampire, but they wouldn’t admit that.  Since my blood has a special purpose at the moment, they want to be certain that it is not going to somehow cause harm.

Paul went through the same kind of routine, but he only had to give 11 vials of blood.  He also had a few additional tests, most notably a bone marrow biopsy which required the drilling of a small hole through the bone in his hip.

MD Anderson Cancer Center is an amazing place.  I had no idea how many patients are treated there for all types of cancer.  I spent most of the day in the areas dedicated to the treatment of bone marrow disorders.  There are several waiting rooms in those areas and there were at least 100 people in each every time I passed through.  Many of those waiting are very sick.  I assume that all of them in the transplant area are in some stage of the transplant or recovery process.  I sincerely hope that all of them will benefit, and it did make me feel sort of good that I am doing my part to help at least one person.

Paul is very tired tonight, as he had to go through all of the poking and prodding with a very limited supply of blood.  To a large extent, he has been living on blood transfusions for the past six months.  He received a transfusion of two units of blood late last week – enough to keep him alive, but not to thrive.

This illness and fatigue is not the norm for Paul.  Less than a year ago, he retired from a position with the Department of Defense and celebrated by climbing one of Colorado’s 14’ers – that is, a mountain with an elevation exceeding 14,000 feet.  He seemed to be very healthy, except he had an enlarged spleen.  His doctors told him that the spleen would need to be removed.

The splenectomy was performed after he moved to Austin in January.  Amazingly, his spleen, which should be about the size of a fist, was the same size as his liver and weighed ten pounds – and he had two extra “auxiliary” spleens.  A few weeks after that he began having health problems, was found to be severely anemic and, after being seen by a numerous doctors, was diagnosed with myelofibrosis.

It seems that since the fibrous tissues in his bone marrow prevented blood from being made there, as is the usual process, his spleen took over that function and was making the blood he needed for life.  The body is an amazing and intelligent organism!  However, when the spleen was removed, the source of most of his blood was gone.

Tomorrow promises to be another day of poking and prodding – at least for my brother.

8-21-11

What is it like to be a donor for a bone marrow/stem cell tansplant?  Since I learned that I am going to play that role, I have been trying to find out and many friends have wanted to know what is involved.  There is some information available on the internet, but much of it is not very helpful.  As with most things, it seems that the best way to learn is to actually experience the process – as I am going to do over the next ten days.  This journal is intended to describe my experience and provide what I hope is helpful information to anyone else who may consider acting as a stem cell donor.

I am donating stem cells because my brother has been diagnosed with a rare and very serious disease of the bone marrow known as myelofibrosis.  I am not a doctor and am not writing for a medical audience, so there will be no attempt to give a detailed explanation of the condition.  However, a summary, based on my limited understanding, will help explain why a transplant is necessary.

Myleofibrosis occurs when an abnormal stem cell causes bone marrow tissue to be replaced with fibrous tissues like those used in the body’s connective tissues. This is a life-threatening condition because it is in the bone marrow that most of a person’s blood cells are formed.  Blood cells are responsible for the constant maintenance and protection of every other cell in the body.  To perform that function, literally billions of new blood cells must be produced each day.  That is not possible when the normal bone marrow tissue has been crowded out by the fibrous tissue.

Until a few weeks ago, I thought of a bone marrrow transplant as a doctor drilling into the hip of a donor, removing bone marrow, and then placing those cells into the recirpient after the recipient’s existing bone marrow had been destroyed.  Actually, though, not all of the bone marrow cells are helpful in this process.  What really needs to be transplanted is a tiny fraction of the cells in the donor’s bone marrow – cells that are known as hematopoietic stem cells.  Speaking simplistically, the prefix “hemato-” means “blood” and the suffix “-poietic” means “producing.”  Hematopoietic stem cells (which we will refer to as “HSCs”), then, are the cells which produce the myriad types of blood cells which are needed to sustain human life.

Most HSCs are found in the marrow, but a few circulate in the blood stream.  In the marrow about 1 in every 10,000 cells is a stem cell.  In the blood stream, it is only about 1 of every 100,000 cells.  The stem cells found in the blood stream are called peripheral blood stem cells (“PBSCs”).  Although stem cells are hard to find in the blood stream, it seem that those cells are often better for transplanting.  So, I am going to be the donor for a PBSC transplant.

The procedure is going to be done at the M D Anderson Cancer Center in Houston, Texas.  Earlier today I flew from my home in Colorado to Austin, Texas where my brother lives.  Very early tomorrow morning we are going to drive to Houston and begin.