Ethnic minorities on the bone marrow registry are alarmingly low. Non-blood-relative bone marrow matches for minorities are therefore very difficult to find. There is a large genetic component based on racial similarities in determining a life saving match! People of African descent, Asian descent, Pacific Islander descent, Hispanic descent, Middle Eastern descent, Native North/Central/South American descent, or people of racially-mixed decent have a very difficult time finding a match. Joining a registry could save a life. A simple blood test or cheek swab puts you on the registry. They will contact you if a match is found. This is the last chance for many desperate marrow recipients despite horrible odds. Jeremy Fisicaro was one of the rare matches. He graciously shares his experiences as a minority bone marrow donor.
This process began some years ago. When I was in Physical Therapy graduate school 1996-1998, a friend of mine talked me into donating blood. It quickly became a habit. This continues today. One day when I was donating in Sacramento, I was approached by one of the Blood Source staff and asked if I would be interested in getting on the Bone Marrow Donor Registry. The extra vials of blood could be drawn as I finished donating blood. Because I am a minority, Mexican and Italian, the fees would be waived. Sure, why not.
On Mon Dec 29th
, 2008 I received a phone call from the National Marrow Donor Program (NMDP) stating I potentially was a bone marrow match for someone and would I be interested in getting tested further to see if I was a match? I quickly returned the call and said yes. I sent a text message to my wife telling her that I might be donating. It was set up with the one of the local labs so that I could come in and get another few (10?) vials of blood drawn to further see if I was truly a match. Very soon after I was contacted and told that I was a match. Was I willing to proceed further? Yes. At this point I was sent a packet of info, forms to fill out and info on the donation procedure. One thing that stood out is that working through the NMDP, I would never meet or know the recipient. At best I could send a card or communication to the NMDP and they would forward it to the recipient with all identifiers removed. Once contacted, there are 2 ways to donate: 1) bone marrow donation: aspirating marrow from your pelvis or 2) peripheral blood stem cell donation (PBSC.)
My recipient needed bone marrow. Through all this, they tell you that you ARE NOT OBLIGATED during this process and can back out at any time. We began the process so that I could have a physical done by a physician that was not my own and not the physician doing the procedure. Since I work in a hospital I began to ask about the donation process. The most common comments were….. “I hear that really hurts!” “Why are you doing this?” “Do you know the person”. I spoke with an Oncologist that works at our hospital and he explained a bit more what happens. I spoke with an experienced Oncology RN and she told me it felt “like you were kicked by a horse.” My coordinator at the NMDP set up my physical in Berkeley, CA. The NMDP takes care of everything. They booked my flight from Reno to San Francisco, had a car pick me up, transport me to Alta Bates in Berkeley. At Alta Bates, I had a physical, chest x-ray, more blood drawn and an EKG. After asking a couple of questions, the physician told me I could start riding my bike when I could tolerate the position a road bike puts you in. The car returned to take me back to the airport and drop me off. They reimbursed me for food, parking for my car at the airport and any associated expenses. Once the physician gave me a clean bill of health I was asked again if I was interested in proceeding further. Yes. At this point a date was set, Thursday March 26th. I was again reminded that I was not obliged to do this and could back out any time I wanted. At this point I was told that the recipient would be receiving radiation for 7-10 days prior to the planned donation. If I backed out in those 7-10 days, she would die. Somewhere in this I was informed that the recipient was a female, in her 40’s, suffered from AML and was in the Portland, OR area. I also got to donate my own unit of blood 10 days prior to the Bone Marrow Donation so I could get it back after the donation in the Recovery Unit. Paperwork was filled out and plans were made. NMDP again took care of everything. Plane flights for Karen and myself, the car to pick us up at the airport and take us back and hotel reservations close to Alta Bates. We flew out on Wed afternoon to San Francisco and headed to the hotel. Here we met up with my folks who joined us at the hotel to be supportive. I needed to be at the hospital at 6 am the next morning. The next morning we took a taxi to the hospital and I was taken in to pre-op where I got to change into the really fashionable hospital gown. An IV was started, they drew more blood and then I was off to surgery. Drugs are great because the next thing I know I am waking up and the recovery nurse is asking me how I feel. “Not bad actually”. The nurse gave me 2 mg of morphine to control the pain. I took a little nap. I woke a little later feeling a bit sore and stiff. The nurse gave me something to drink and I talked with my parents and Karen. My understanding is the bone marrow is viable for less than 24 hours and the recipient was not in the same hospital, so the marrow was flown to the recipient I assume. I was discharged from the hospital at about 1 pm with Vicodin for the pain and some instructions for the care of the sites the drew the bone marrow from. They withdraw between 2-3 pints of bone marrow from the back side of the pelvis (the posterior superior iliac spine). I had 4 puncture sites on my backside that were covered with gauze and tape. I was stiff but not too bad. We headed back to the hotel and relaxed for a few hours. We then went for a short walk and had a dinner in the hotel restaurant. The next day we flew back to Reno. I was a bit stiff but nothing I would consider too painful. I took vicodin until Saturday, then switched to Tylenol because I couldn’t take advil (bleeding risk) and stopped taking medications on Monday. It was definitely painful/uncomfortable but it was tolerable.
As an aside, prior to becoming involved to the bone marrow donation, I had registered for a Half Ironman Duathlon (World’s Toughest Half in Auburn CA). Run 1.2 miles, bike 56 miles with 6000’ of elevation gain, run 13.1 miles. This was taking place on May 31st
2009, just over 9 weeks post donation. People assumed I would not compete. I chose to compete. I was told in the information post donation to not run for 2 weeks due to a potential bleeding risk and to avoid doing anything “strenuous”. Sunday after the donation I went to the gym and did 30 easy minutes on an elliptical trainer. Monday I went back to work ( I am an inpatient Physical Therapist) and after work got back out on my bike for and easy 15 or 20 mile ride. I competed in the duathlon and took third in my age group 9 weeks later. One of the biggest challenges was being fatigued. My blood count was low for a while. I could go out and exercise but there was minimal reserve to draw from. Once I was fatigued, I was done. I was stiff and sore for a couple of weeks but it was tolerable. The idea of being “kicked by a horse” was pretty accurate. If anyone has played a sport…. I have been kicked just as hard playing soccer and I assume that being hit by a baseball would be close to the same. I don’t consider myself to have a high pain tolerance but this was do-able. So I hear the question from many people asking why I did this. Why wouldn’t I? In what I have seen, many people become involved in causes like this after it becomes closer to home. A friend or family member becomes diagnosed and it suddenly becomes very important. So why do we wait until then? Others asked why I would do this for someone I don’t know. I feel that this person deserves the best opportunity just like any other … family member or not. I understand that if one is Caucasian, there is a 80-85% chance to be matched. As a minority, that number drops to 35-45%. I fall into the minority category but that wasn’t my motivation. It seemed that the fact that someone needed help and it was something I could do was enough. Since the donation, my primary care physician, who is a personal friend of mine, has placed himself on the Registry. I also have a co-worker who has done the same. People see this procedure as being terribly painful and a significant interruption in their life. I view it more as something that is pretty uncomfortable and a minor hiccup in life. Would I do it again? Absolutely. As for the outcome, I have not received any communication from the recipient. As the 1 year anniversary approaches, I plan on sending a card through the NMDP. I encourage all that believe in this potentially life-saving procedure to register with the National Bone Marrow Donor Registry . For more information visit www.marrow.org
Jeremy Fisicaro is currently a practicing Physical Therapist at Carson Tahoe Hospital in Carson City, NV. He has inspired his personal friend and Primary Care Physician Dr. B. Bottenberg to place himself on the Registry as well as a co-worker. To contact Jeremy for more information, please send him an e-mail.
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