Stem Cell Donation

I got news today that the person to whom I donated my stem cells passed away. I performed the donation about 7 months ago and I knew he was sick because I'd been called to ask if I could donate white blood cells. Originally I was supposed to do this at the beginning of this month but he was too sick so they postponed it until the first week of July. I never found out who he was because the rules are that they only tell you if the recipient agrees after one year. Now, I'll never know.

There have been a couple of drives recently for people to get tested and I also got a phone call last week from someone who was found to be a potential match. The process wasn't that difficult and was rewarding. After I donated I sent an email to a few people describing the process and I figured I'd post it here also so I could just send the link if anyone had questions in the future.

In 1994, when I was in Yeshiva University there was a drive to get people tested for Jay Fineberg who needed a bone marrow donation so I was tested. It didn't cost anything and wasn't a big deal so I figured that I might as well. At that time the only way to get tested was by them taking a little blood. Now I understand that they just take it from the blood. I wasn't a match for him but my sample was put in a national registry. I didn't hear anything until about 7 years ago when I was contacted that I was a potential match. They had tracked me to Missouri but didn't realize that I had moved to Maryland. The mail was forwarded though and they updated my address. Turns out that there was a better match for that person then and I didn't hear anything again until a couple months ago. At that time they told me that there was about a 1 in 12 chance that I'd be the best match.

This time they called again a couple weeks later and said that I should go in for more blood to be drawn so they could do more testing to see if I'm the best possible match. So I went down to Hopkins in Baltimore and they drew the blood. One week later (I was told that it normally takes 2-4 weeks and I'm not sure why mine was faster) I got a call that I was indeed the best possible match. They wanted to be sure that I wanted to continue through the process and donate. I assured them that I did. So they put me in touch with Sarah Pogue at the NIH in Bethesda. She would walk me through everything else that I needed to do.

There are two possibilities for donating marrow. One is a surgical procedure where they take marrow from your back and pelvic bones. The other is a PBSC donation which is done through the blood and is less painful and an easier recover. My patient was a 61 year old man in the US with Myelodysplastic Syndromes (MDS). His doctors, thankfully, chose the PBSC donation. So they sent a car for me to go to NIH for a complete physical (EKG, chest xrays, blood work etc) to make sure that I was healthy enough to donate. I was so we scheduled the donation.

For 4 days before the donation I had to get shots of filgrastim each day. This increases the number of stem cells in the blood. Most of your stem cells are in the marrow but each person has a few in the blood. The goal during these 5 days is to move as many stem cells from the bones to the blood. The amount  of medicine you get is determined by your weight so I needed 2.6 ml. They don't do more than 2 ml in one shot so I had to get two shots each time- one in each arm. I also had the option to get them in my stomach but I'm very ticklish and there was no way I was going to allow a shot in my stomach. The first shots have to be done at the hospital so they can monitor you. Since it was on a Sunday, Rivka agreed to come with me. They picked us up at 9 AM and we met Sarah at NIH in Bethesda. She gave me one shot in each arm and they didn't really hurt much.

For each of the next three days, a different nurse came to our house to give me the shots. Each time she gave me a shot it hurt more than the previous time. I also had a constant pain in my lower back and a headache. It wasn't unbearable  at all and I really wasn't in a lot of pain (probably because I was taking tylenol) but it was just annoying. By Wednesday though I was also feeling worn down and a little weak and very tired.

Thursday morning, they picked me up at 5:45. I had been up since 4 because I couldn't sleep anymore and had eaten breakfast and caught up on all my email. I got to the hospital around 7 and Sarah met me. She gave me the last shots and a nurse started prepping me for the actual procedure. I hadn't davened at home because it was way too early so I went into a private room to daven and then went back to finish the preps. I had brought two books to read but the nurse told me that it would be too hard to read and I should watch movies instead. So I chose Mall Cop and Slumdog Millionaire.

Then the nurse started hooking me up. From my left arm was a big needle like they usually use to draw blood when you donate with a tube coming out that split into two and went across my body to the machine which was on my right. She also gave me a squeezy ball to squeeze every few seconds. I was told that I could not move that arm at all. Near the right wrist was another needle, much smaller but with three tubes going into it. One was to put the filtered blood back into my body. Another carried water and the third had calcium. The procedure started around 8:45.

I started watching Mall Cop but I was really bored so I asked them to turn it off and to give me my books. I was told to be very careful not to move my left arm at all but I was allowed to move my right arm as long as I was careful so it worked out pretty well reading the book. The only problem was that occasionally I'd forget to squeeze with my left hand. Every time I forgot, the machine beeped and it stopped pumping until a nurse came to turn it back on. After a couple hours they determined how many stem cells were there per liter of blood and how many the patient needed. So they decided that they had to filter about 20 liters of blood. They could have had to do up to 24 liters so this was pretty good. A person only has about 5 liters of blood so they'd filter it and put it back in and then filter it again.

Then I had to go to the bathroom. They were pumping me with water so it didn't help that I had gone just before they put the needles in my arms. I was really feeling uncomfortable so I just had to bite the bullet and try to get it all in the pitcher without spilling. I assured the nurse that I'd be OK on my own but it wasn't easy going while lying down and not being allowed to move my left arm. Thank God it went okay and I didn't spill any.

Soon after that excitement, at around noon Shira came to keep me company. Right after she got there some blood started oozing from the right arm which I had been moving quite a bit so the nurse just fixed the needle and we were good. Shira and I counted down until we had done 20 liters. I finished at around 1:30 and then they finished the paperwork and let us leave. My back was hurting and I had a headache and I was worn down but it was good to be able to move again. I felt that way most of the day on Friday also but by Shabbos morning I was completely OK. The only lasting effects are bruises all over my body. My platelet count was a little low so I have bruises where I got the shots and where the needles were. They don't hurt though and I'm fine.

Shira wrote a nice long letter (we couldn't sign our names) to the recipient and we won't know who it was or how he's doing for at least a year and even then it's only if he agrees. We do know that a doctor from the hospital took the blood to the patient and he had got the marrow the next morning. Even though they took 20 liters of blood from me, they gave  most it back to me and he was left with only about a half liter. It still looked like blood even though it was basically just the stem cells. A refuah shleima to the recipient and hopefully my stem cells will help him live a longer life.

That's basically the email that I sent. We got a letter from the recipient a couple months later thanking us for the gift and telling us a bit about his family but without giving away any details about him personally. We've been rooting for him ever since. We were all sad to get the news today.

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