Stem Cell Donation – Day 7

8-28-11

I had a bit of a surprise while attending church this morning.  The pastor mentioned to the congregation that my brother was going into the hospital and stated that I was present and was going to serve as the donor for a liver (!) transplant.  I don’t think I’m prepared to do that, so we corrected the good reverend.

On the subject of churches, I received an email from my son, Michael, who is currently traveling through Eastern Europe.  He said that he has visited several Orthodox churches, all of which have an elderly lady selling candles at the door.  In each, he has purchased a candle and lit it with the intention that Paul’s transplant will be a complete success.

This is the third day of the Neupogen injections and it was an up and down day.  Late last night the pain level changed from mild to moderate and I couldn’t find any way to lie in bed without hurting.  I got up and paced and read for awhile and then tried to sleep in a recliner chair in the living room. By morning I had slept for perhaps three hours.  Throughout the day I sometimes felt pretty normal and sometimes not so normal.

We drove back to Houston this afternoon.  Needless to say (but I’ll say it anyway), I took a Tylenol before this road trip.  I was much more comfortable than on Friday’s drive from Houston to Austin.

Tomorrow morning I find out if enough stem cells have broken loose into my blood stream.  If so, they will “harvest” the cells needed for the transplant. We have an interesting day ahead.

Stem Cell Donation – Day 6

8-27-11

This is the second day of Neupogen injections, so I hope I am half finished with them.  My brother’s insurance company hopes so, too.  The prescription I received yesterday gave me enough Neupogen for four days.  The cost was $3,499.56, all of which was paid for by the insurance company.  I find out on Monday whether I need additional injections.

Today I am glad that I came back to Austin for the weekend.  Since I didn’t have to go for any long car rides, everything was much more comfortable here that it would have been in Houton.  As a bonus, my sister-in-law did my laundry for me.

The doctor I saw at the MD Anderson Center yesterday was Martin Korbling, who struck me as a very intelligent, no-nonsense physician with a slight German or Austrian accent.  Dr. Korbling informed me that I should not run, swim, lift weights or do any kind of strenuous workout while taking the Neupogen.  I haven’t done any of those things, and I don’t want to.  I am not feeling any great pain, but neither do I feel like moving much beyond getting up from the couch and walking to the kitchen.

I took one Tylenol capsule before going to bed last night, and I did a Reiki self-treatment after I got into bed.  I slept pretty well after that.

Today I felt sluggish with generalized muscle aches sort of like one experiences with the flu.  I did not feel the need for any Tylenol during the day, but I think I will take another capsule and do some more Reiki at bedtime.

So far, taking the Neupogen is not too bad.  I wouldn’t do it for fun (I couldn’t afford to do it for fun), but I am happy to go through this minor discomfort to condition my blood so that it might save a life.

Stem Cell Donation – Day 5

8-26-11

If you are reading this because you are going to be a stem cell donor, the summaries for the next few days should be of interest.  Today I started my Neupogen injections.

Neupogen is a brand name for a type of drug known as Filgrastim.  It has been used for more than 30 years, being one of the early pharmaceuticals produced through recombinant DNA technology.  It was created when a human granulocyte colony-stimulating factor gene was combined with genetic material from E. coli bacteria.  The bacteria are then able to produce genetic material that can be injected into a human and cause certain blood cells called granulocytes – including white blood cells called neutrophils – to be produced in large numbers.  Even more importantly, it causes hematopoietic stem cells to be released from the bone marrow into the blood stream.  As I mentioned earlier, those are the cells that are gathered and transplanted.

This morning, I filled a prescription for the Neupogen and was instructed on how to give the shots necessary to get it into my bone marrow.  I gave myself two shots into the fatty layer of my abdomen, one on each side.  Tomorrow I will neeed to give myself the shots in the fatty layer of each thigh and I will continue that rotation until the collection of the stem cells is completed.  I thought that was going to hurt, but it didn’t.

I was also instructed concerning possible side effects, which are mostly pain:  bone pain, muscle pain, joint pain.  There are some more serious side effects that are possible, but those are much less common than the various kinds of pain.

Within the first hour after the shots I began to feel a “rush” from the drug, which soon subsided.  A few hours later I began to feel a moderate pain in my rib cage.

Meanwhile, my brother was at the hospital receiving a blood transfusion.  It had been a week since his last transfusion and his hemoglobin levels were very low.  As I mentioned previously, he is really being kept alive by transfusions now; thus, the need for the transplant.

Since this is Friday, and nothing is scheduled at the hospital until Monday, Paul and Deb decided that they would go back to their home in Austin for the weekend.  I had asked a doctor earlier if I would be able to go with them and was told that I should stay close to an emergency room in case I experience any serious side effects, but whether I went to Austin or stayed in Houston was left to my judgment.  I had to choose between (a) staying by myself in a strange city with no one around to help in case of complications and no car, and (b) being with family in a more comfortable home, with access to hospitals and medical care.  It seemed like a fairly easy choice.  I picked (b).

If I had to do it over, I might pick (a).  Riding in a car for 200 miles, my ribs felt every bump in the road and my stomach was a little queasy (another fairly common side effect).

I am allowed to take Tylenol for pain, but not things like aspirin, ibuprofen or Alleve because those act as blood thinners.  I got through the whole day without needing Tylenol, but I believe that I will take one before I go to bed.

In summary, the first day of Neupogen was not so bad except for the discomfort I brought on myself.

Stem Cell Donation – Day 4

8-25-11

Because of the cardiology diversion yesterday, the medical appointments originally scheduled for today were moved to tomorrow.  I used this unanticipated free day to run four miles before it got too hot, do some work and spend some time sightseeing.  We also moved.

Let me briefly mention the weather.  One of the things I brought in my suitcase was a Native American flute.  I sometimes play it at home to try to coax a little rain when it gets too dry.  Last night I played to try to coax some rain here.  The flute has always lived in a semi-arid climate and had never been able to work with moisture in the air like there is in Houston.  When I went jogging the sky was cloudy.  A short time later, it began to rain and it rained hard for about an hour.  That cooled the air enough that today was the first time in 25 days that the temperature here did not go above 100.  Coincidence?

I also brought my computer so I could work remotely to keep from getting too far behind at the office.  I am fortunate that the company I work for has been very supportive and has made it easy for me to be away for the time necessary for this stem cell donation.

One thing I have not mentioned is that after my stem cells are collected, my brother is going to be staying here in Houston for quite a long time.  Beginning immediately after the collection, he will receive out-patient chemotherapy for about a week to basically destroy his bone marrow before the stem cells are transplanted.  He will then be admitted to the hospital, the transplant will be done and he will need to remain an in-patient in a “clean” room for up to 30 more days until his immune system is strong enough that he can go out into the world.  When he is finally released, he will need to stay no more than a few minutes away from the hospital for another two months.  Essentially, that means that he and his wife will be living here for several months.

It is certainly expensive to maintain a house in Austin as well as someplace in Houston.  They have received a great help from an organization known as the Aishel House, a Jewish group that provides many wonderful support services for patients of the many hospitals in this area.  The Aishel House has a number of apartments that may be rented by patients like Paul and their families at reduced rates.  He and Deb were able to rent a fully furnished efficiency apartment, less than half a mile from the MD Anderson Center, for $600 a month.  We got them moved in this morning.

Tomorrow I begin the Neupogen injections leading up to the stem cell collection next week.  The next few days should be interesting.

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.