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by Staci M. Reese: Kindred

Kindred

My Experience as a Bone Marrow Doner

By Staci M. Reese: Kindred

In March of this year I was called by the National Marrow Donor Program with news that I was a potential match to be a Marrow donor for someone dying of Leukemia. I had been in the program since 1990 and this is the second time I had been called for further testing. The first time I did not match the secondary testing. On March 26 I found out that this time, I had.

I am an Atheist. I do not believe in life-here-after or reincarnation. I do not believe that I will see a light and that if I follow, it will take me to my departed loved one's and a freshly starched pair of wings. The same goes for the big pit filled with fire and damned souls. It's all part of the same mythology. Here's what I believe. When we die - that's it! No second chance. No wings or pit. My beliefs as an Atheist is why I agreed to be a Bone Marrow donor.

I do not know who my recipient is, where he is, or what his religious beliefs are. I don't care. No matter what he believes, dead is dead. I had the ability to give him a chance at life, something he would not have had without me. My Atheist beliefs made the decision easy for me.

The following is my story. Starting with my entering the hospital and ending with information on being a Marrow donor. This is not for everyone. However, if you are healthy - think about it. If it were you, wouldn't you want someone else to do at least that for you?

On May 27, I entered Sutter General Hospital at 5:11 am. I was taken into a ward-like area where I changed into a hospital gown. Next I laid down on a gurney with a sheet separating me from the rest of the room. Karlynne from the NMDP joined me here. Karlynne was going to be with me from this moment up until I was resting in my room after the surgery. My vitals were taken, another blood sample, and an IV placed in my arm to keep me hydrated and to maintain my glucose (they told me the liquid was like Gatoraide). Next I was wheeled off to pre-op. Here I met both of my surgeons (working on both sides of my pelvic bone at the same time, they are able to speed up the procedure) and my anesthesiologist. They all talked to me to make sure I was alright and answer any questions I might still have. While talking to Karlynne, Dr. Maxwell injected a drug into my IV. I blinked four times, Karlynne's voice getting further and further away with each blink. After the fourth blink, nothing. Everything went black. The next thing I noticed was my throat was scratchy and I started to cough. I placed my hand over my mouth, and rather than feel my skin, I felt something hard and plastic. I opened my eyes and found I was in recovery. I looked at the clock and it was 9:50, approximately an hours and thirty minutes later.

I felt no pain, morphine will do that. I noticed that I was being given the blood I had donated for my surgery. When they remove marrow, they need to replace what they have taken with blood. Several weeks before the surgery, I donated three pints of blood to myself. I asked the nurse how many I was receiving back. She told me that I was on my third and last. I was then wheeled to my room.

After the surgery, while I was in recovery, the doctors came out and told her how I was doing, how the surgery went, etc. I thought I would be in a shared room. To my surprise I was placed in a private room and given VIP care. Once in my room, Karlynne told me that the recipients doctors had asked for more marrow than usual (if possible). As it happened, I was able to give even more than they requested. The more marrow donated, the better for the recipient. I felt pretty good about that.

The first time you get up, you need assistance. The anesthesia can make you dizzy. As it happened, I raised my bed to place me in a sitting position to (try to) eat lunch. I've been on tamer rides at the State Fair than that little trip sitting up! When I eventually got to my feet, about 1:30 pm, the nurse helped me climb out of the hospital bed (the hardest part), with my IV following me. My legs felt like they belonged to someone else. They felt like granite. When I got back into bed I was hurting. The nurse injected a painkiller into my IV. I felt much better very quickly. I believe the only reason I was hurting while in the hospital was because I had to lay on my back. The IV was in my left arm, so I could not lay on my left side, and it was not long enough for me to lay on my right side. Suggestion: If you ever do this, ask for a longer IV and lay on your right side. Once home, and able to sleep on my side or stomach, I was fine.

The other reason I had trouble sleeping was something I forgot about. Twice per shift, the nurses came in to check my vitals. I also had a dry throat and mouth (due to the anesthesia and pain killers) I was drinking a lot of water. This turned out to be a good thing because they ask that you drink a lot of water to keep you from becoming dehydrated. Every time I got up and walked around, it seemed easier and less painful. When it was time to go home I was walking around great. The next morning I had breakfast and was released from the hospital. I had a very good experience and if asked, I would gladly be a donor again.

For most people there are very few times in their lives that they can say, "I accomplished something of real value", "I truly made a difference." This experience gave me that chance. I was able to give a 32 year old man the chance at life. For that I am very grateful.

Note: August 13th, I received a letter from the National Marrow Donor Program asking me if I would be willing to reenter the program after a year and/or give additional blood samples. Without hesitation, I said yes! I have never felt better about myself than I have since I helped this individual.

The Facts on Becoming a Marrow Donor

The National Marrow Donor Program(r) (NMDP) facilitates unrelated marrow transplants for patients with life-threatening blood diseases by recruiting donors, maintaining a Registry of more tan 3 million volunteer donors and offering patient services, while also conducting research to further the field of unrelated marrow transplantation. Today, more than 100 patients receive marrow transplants through the NMDP each month. However, the number of patients who could benefit from this lifesaving therapy is several times greater, and the NMDP is working to close this gap. The NMDP began the program with equal funding for all ethnic groups. Since Caucasian donors make up the majority of the registry, the allotted funds for Caucasian donors have been depleted. Funding is still available (through the Office of Naval Research) for the tissue typing of minority volunteer donors. The Marrow Department at the Sacramento Blood Center does offer a waiting list for those who wish to join the registry, but are unable to pay the $105.00 tissue typing fee. When funds become available, waiting list donors will be notified. Anyone interested in having their name put on the waiting list can call the Marrow Department at 916-456-1500 ext. 302. For more information call your local NMDP Donor Center or access their website at www.marrow.org. The Donor Center located at the Sacramento Blood Center services an area from Redding to Fresno and includes Sonoma County. Their phone number is 916-456-1500 ext. 302 or 800-995-4420 ext. 302.

Q&A

What is Marrow?

Marrow is found in the cavities of the body's bones. It resembles blood and contains stem cells, which produce red cells, white cells and other blood components.

Who are the recipients?

At any given time, there are an average of 3,000 patients searching the NMDP Registry. Of the 8,196 transplants facilitated by the NMDP, 75 percent were for some form of leukemia. Marrow transplants are also a treatment for patients with anemia, lymphomas, and a number of other life threatening blood diseases.

What is required to become a donor?

Anyone between the ages of 18-60 and in general good health can become a volunteer marrow donor.

How does a donor match a patient?

Human Leukocyte Antigens (HLA) are the name given to the system used to identify the antigens matched between patients and donors for transplantation. There are a total of six markers, three antigens inherited from the mother and three antigens from the father. A blood test is performed to identify which HLA markers are present. A potential donor's blood is tested this way when they join the Registry, and the results are entered onto a database called the STAR(r) (Search Tracking and Registry) System. When a search is initiated, the patient's antigens are compared with the antigens of each of the more than 3 million volunteer donors. Within 24 hours the search results are sent to the physician who initiated the search. Physicians review the search results with their patients and discuss treatment options.

Typing and Ethnic Groups

Tissue types are inherited and unique to certain ethnic groups. This means certain types are more commonly found in some ethnic groups than others. A patient is more likely to match someone within his/her own ethnic group. It has been shown Caucasian volunteer donors add unique tissue types to the Registry at a lower rate than minority volunteer donors. Because minorities currently represent less than one-fourth of the volunteer donors on the NMDP Registry, minority patients are less likely to find potentially matched donors. It is for this reason the NMDP, with federal support and a Congressional mandate, continues its initiative to increase the number of minority volunteer donors on the Registry by removing financial barriers to cover typing costs.

Who covers the donor expenses?

All of the donor's medical expenses relating to donor matching, work-up and collection are paid by the NMDP who in turn bills the patient's transplant center.

What is the chance of matching a patient?

The odds vary widely, depending on the rarity of the patient's tissue type. This means a volunteer may never be called. However, if identified as a match donor, the volunteer may be the only person who can provide lifesaving marrow to that patient.

When a volunteer matches, what's next?

Once additional laboratory tests (blood samples) have determined that a potential donor matches a patient, the volunteer must decide whether to donate. Before making a final commitment to donate, the potential donor attends a thorough information session. It is requested that a family member or close friend attend with you. As it was explained to me, the donor is more concerned with the recipient than with themselves. The person accompanying the donor will more likely be more concerned with what happens to them. During this conference you speak to doctors, watch a video, and receive extensive educational materials. After the information session and a thorough physical examination, the potential donor decides whether to become a donor. Before signing the "Intent to Donate" form, the potential donor must be certain about his or her decision to donate marrow. After the donor signs the "intent", the potential recipient undergoes a pre-transplant treatment of chemotherapy and/or radiation therapy to wipe out all disease. They need to get the patient as healthy as possible (in remission for three months) and then they eradicate his or her marrow, preparing them for the healthy donation. Because the treatment destroys the immune system, the potential recipient will most likely die if he or she does not receive a marrow transplant.

How is the marrow collected?

Typically, the donor enters the hospital on the day of the marrow donation. Donors remain in the hospital for several hours or overnight after the marrow collection. All donors receive general anaesthesia for the procedure. The liquid marrow is removed from the rear of the pelvic bone using a special needle and syringe. This process generally lasts 60 minutes. The amount of the marrow taken depends on the weight of the recipient. A child takes needs less than an adult. The removal of marrow does not affect the white cells or platelet count; and is completely replenished in 4-6 weeks. After the marrow is collected, it is immediately rushed to the waiting recipient. At this time, the patient is in isolation due to his/her immunity system being drastically lowered from chemo/radiation. The marrow enters the patient intravenously. Is marrow donation painful for the donor? Because anesthesia is used, the collection procedure is painless. Donors can expect to feel some discomfort in their lower back for several days following the donation. Some donors compare the discomfort to the pain experienced after falling on their tailbone, while others describe it as similar to muscle pain.

After joining the NMDP Registry

Sometimes there are circumstances that cause donors to be unavailable when called upon. However, when patients are searching, time is essential and knowledge of the availability of donors is crucial. If there is a change in address, a significant change affecting long-term health or a change in personal commitment to be a potential marrow donor, the NMDP encourages volunteers to notify their donor center immediately.

Blood donation

A patient waiting for a marrow transplant also uses a lot of blood and blood products. Therefore, weather or not you choose to become a marrow donor or not, the NMDP encourages you to become regular blood, platelet and plasma donors.

Back to Top of Page

Thinker's Anonomous

It started out innocently enough. I began to think at parties now and then to loosen up. Inevitably, though, one thought led to another, and soon enough, I was more than just a social thinker.

I began to think alone - "to relax," I told myself - but I knew it wasn't true. Thinking became more and more important to me and finally I was thinking all the time. I began to think on the job. I knew that thinking and employment didn't mix, but I couldn't stop myself.

I began to avoid friends at lunchtime so that I could read Thoreau and Kafka. I would return to the office dizzied and confused, asking, "What is it exactly we are doing here?"

Things weren't going so great at home either. One evening I had turned off the TV and asked my wife about the meaning of life. She spent that night at her mother's.

I soon had a reputation as a heavy thinker. One day the boss called me in. He said, "Billy Joe, I like you, and it hurts me to say this, but your thinking has become a real problem. If you don't stop thinking on the job, you'll have to find another job." This gave me a lot to think about.

I came home early after my conversation with the boss. "Honey," I confessed, "I've been thinking..."

"I know you've been thinking," she said, "and I want a divorce!"

"But Honey, surely it isn't that serious?"

"It is serious," she said, lower lip aquiver. "You think as much as college professors, and college professors don't make any money, so if you keep on thinking, we won't have any money!" "That's a faulty syllogism," I said impatiently, and she began to cry.

I'd had enough. "I'm going to the library," I snarled as I stomped out the door.

I headed for the library, in the mood for some Nietzsche, with a PBS station on the radio. I roared into the parking lot and ran up to the big glass doors... they didn't open. The library was closed.

To this day, I believe that a Higher Power was looking out for me that night.

As I sank to the ground, clawing at the unfeeling glass, whimpering for Zarathustra, a poster caught my eye. "Friend, is heavy thinking ruining you life?" it asked. You probably recognize that line. It comes from Thinker's Anonymous.

Which is why I am what I am today: a recovering thinker. I never miss a TA meeting. At each meeting, we watch a non-educational video - last week it was "Porky's". Then we share experiences about how we avoided thinking since the last meeting.

I still have my job, I attend church regularly, and things are a lot better at home. Life just seemed... easier, somehow, as soon as I stopped thinking.

kindred

Thursday, August 19, 1999


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