Transplant Update

9-19-11

This seems like a good time to update Paul’s progress for several reasons.  First, he received the stem cell transplant one week ago.  Next, I attended a high school reunion last weekend and several people asked about him.  Finally, Paul is entering another very important phase of the process.

Before getting to the update, let me briefly mention the reunion.  In addition to many members of our Arvada West High School Class of 1966, a few friends from other classes in the middle to late 1960s attended.  I was very favorably impressed with almost everyone who was there.  They are really good people and I feel honored and humbled to have known them at some time in my life.  I may not wait another 45 years to attend my next reunion;  I would like to see them again before 2056.

Now to Paul’s road to recovery:  His blood chemistry, and especially his white blood cells have been monitored daily since the transplant.  The white blood cells are now at only about 10% of their normal level.  That is not a surprise because white blood cells have a fairly short life span and the mechanism that would normally create cells to replace those that die was destroyed by the chemotherapy.  In order for additional white blood cells to be created, the stem cells he received in the transplant must attach to his bone marrow and start doing their work.  The doctors cannot directly detect whether that has been accomplished.  They can only determine that it has when his white blood cell count begins to increase again.

However, the doctors can aid the body in increasing the white cells by giving him a daily shot of Neupogen.  That is the same drug I was given to greatly increase the number of  my white blood cells and to pull stem cells out into my bloodstream to be collected and used for the transplant.  Neupogen is referred to as a “granulocyte colony stimulating factor.”  Granulocytes in this context are a type of white blood cell, the most common of which are called neutrophils.  Neupogen stimulates the production of these cells, assuming that the stem cells have attached and are capable of producing them.  Once neutrophils are created they only live for a few hours.  Therefore, if the level of the neutrophils, as well as other white blood cells, begins to increase, it shows that the transplanted stem cells are working.

Paul is, I believe, receiving a lower dosage of Neupogen than I got before my stem cells were “harvested” because the object is not to pull stem cells out into the blood stream.  It is simply to create neutrophils and other white blood cells.  If all is going as it should, we should see a significant increase in those white cells – and especially neutrophils – within the next week.

Since I am not a doctor, this explanation has been  simplified and is probably not technically perfect.  I think it is fairly accurate, though.  I will provide updates on Paul’s condition as I learn more.

Transplant Completed

9-12-11

My brother has completed the chemotherapy, waited 48 hours for the drugs to leave his system and has actually received the stem cell transplant. 

The proceure itself was uneventful.  The stem cells collected when I was in Houston had been frozen and stored until today when they were thawed and transplanted into Paul’s blood in much the same fashion as a transfusion.  The next two weeks or so are critical.

Having a few million extra stem cells floating in his blood is not going to help Paul.  Those cells now need to “engraft,” which means leaving the blood stream and taking up residence in his bone marrow and then dividing to produce the millions of additional stem cells his body requires. And, of course, all of those stem cells will need to begin producing new blood cells.

I have been visualizing the cells as having had velcro added while they were awaiting the transplant so they can easily attach to the bone marrow.  Thank all of you for whatever prayers, energy work or visualization you have contributed to the success of the entire procedure.

Stem cell donation – One Week Later

9-6-11

As I said previously, the only thing that matters about my stem cell donation is whether the transplant my brother will receive next week is successful.  Still, some folks have been kind enough to ask how I am feeling a week after the harvesting process was completed. 

Thank you for asking.  I am feeling pretty close to whatever it is that passes for normal. 

White blood cells are responsible for fighting infections, invading bacteria and viruses, and similar threats to the body.  Their activities cause the fever, muscle aches, fatigue and other fun symptoms that come with the flu.  The Neupogen injections caused my white blood cell count to more than triple.  The cells, of course, thought they were being called to destroy some invading organism, so they created the achy, feverish response while they went looking for something like a virus.  White blood cells only live a short time, though.  A week after the injections were finished,  most have died.  As a result, I am getting close to having my usual blood chemistry back.

Paul’s chemotherapy begins tomorrow morning – the first step in getting him back to health.

Beginning the Chemotherapy

9-5-11

Happy Labor Day.

This is the first post-donation update on my brother’s stem cell transplant.  It is important to understand that stem cell transplants, which offer the only real cure for myelofibrosis, are not possible for everyone having the disorder.  It is a very intense treatment and many patients are not physically strong enough to go through the procedure.  Fortunately, Paul is one of those who is young enough and strong enough.

After the donor stem cells are gathered, which occurred last week, the next step is to kill off the diseased bone marrow using chemotherapy.  Paul received a test dose of chemotherapy on Friday, and then was permitted to go home for the long weekend.  Tomorrow morning he will be admitted to MD Anderson Cancer Center as an in-patient.  He will remain in the hospital for the next month or more.  On Wednesday, the chemotherapy will begin in earnest, continuing through Saturday.  Next Sunday his body will be given a day of rest, followed by the transplant of the stem cells one week from today.  For the next few weeks he most definitely can use all the prayers, Reiki, good thoughts and good energy he can get.

Stem Cell Donation – Day 10

8-31-11

Six point one million.

For my brother’s stem cell transplant, at least 4,000,000 cells were needed.  Over the two days of apheresis, 6,100,000 were collected. 

The bone pain from taking the Neupogen is worse today than it has been any other day, but I don’t care.  I accomplished what was needed from me and I am now back home  in Colorado.

Of course, none of what has occurred during the past 10 days is meaningful if the transplant to Paul doesn’t proceed successfully.  He begins the preparation tomorrow, and he has some difficult days and weeks ahead.  I will post updates as we know how he is progressing.

I am very tired tonight, so this is a short post.  For anyone who is interested in becoming a donor – not everyone has a sibling available to donate, so donors are needed – good information is available through the National Marrow Donor Program, www.marrow.org or from your local blood bank.  If anyone would like additional information about my experience, you can post a comment here or email me at info@ralstoncreekreview.com.

Stem Cell Donation – Day 9

8-30-11

At least 4 million stem cells are needed for the transplant.  I returned to the apheresis unit this morning to see if we made that goal yesterday.  The total was 3.26 million.  So, I had to take two more Neupogen shots and give some more blood.

I learned that some of the information I put in yesterday’s blog should be corrected.  I said that during the procedure the volume of the blood processed was a little over twice my total blood volume.  Actually, they processed three times my blood volume.  I also said that calcium was added to the blood returning to my arm to compensate for some calcium loss.  Actually, the tingling in my lips was caused by the anti-coagulant I was getting and the calcium treats the side effect of tingling or numbness.

About 80% of the needed stem cells were harvested yesterday, so it wasn’t necessary to take quite as much blood today.  They told me they would only have to process two times my total blood volume.  For some reason, my blood was not flowing as freely today and my nurse, Josh, had to make a few adjustments.  He took great care of me throughout the procedure and we were finished in 2 1/2 hours.

After the tubes were removed from my arms, Josh brought me some juice and Graham crackers.  I don’t think that all 17,000 employees of MD Anderson read yesterday’s comment about not receiving juice after giving the blood cells;  rather, its was probably one of those “ask and you shall receive” things.

Technically, I don’t know for certain if I am through with the harvesting process.  I need to return tomorrow to confirm that the required 4,000,000 cells have been collected, which is all but certain.

I went back to the apartment and took a nap – I was feeling “drained.”

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.