From BMT Newsletter January 1995 Issue # 27 - Donors - Some Very Special People Reprinted by NYSERNet with Permission from BMT Newsletter
Each year more than 5,000 people donate bone marrow to save the life of someone they love. Hundreds more donate marrow for someone they don't even know.
In this issue, 24 donors describe how they felt both physically and emotionally when they donated bone marrow, and how they coped if their loved one did not survive. They shared their stories to provide support to future donors who may not have the opportunity to talk with another donor. Regardless of how difficult or easy their experience as a donor was, all but one said they'd gladly donate marrow again, even for someone they didn't know. Here are the stories of 24 very special people.
33-year-old donor for sister with CML (leukemia)
I was in high school when my sister Rachel was born. She was like my baby. When I found out she had leukemia, I was more than willing to be her donor. It helped to talk with a man who'd had a BMT. It was great to see him sitting there alive and well.
The harvest was more painful than I expected. I had seen donors 4 and 5 years old playing kickball in the lobby the day they were harvested, but I hurt like the devil for two days. Despite the pain, I would do it again in a heartbeat. Rachel is doing beautifully. The experience has made our whole family much closer.
25-year-old donor for sister with AML (leukemia)
When my mother called she said, I have some good news and bad news. The good news is that Holly has a matched donor. The bad news is you're it. I'm a big wimp about pain, but the harvest was less painful than I'd feared. I was 100 percent normal within a week.
If Holly had died I might have blamed myself. I was her last hope that's a lot of pressure. But you have to concentrate on trying to save a life and not dwell on the negatives. I would do it again in a second.
45-year-old donor for brother with CML (leukemia)
I thought I was prepared for the harvest, but when the day came I was very emotional. I wasn't worried about the pain, but I felt very blue and cried at the drop of the hat. The pressure must have been building up inside of me. The harvest wasn't painful. It took about two weeks to feel completely like myself. If we went out for dinner, it was hard to sit for two to three hours, things like that. It was more annoying than painful. What helped most was having my sister with me. Our deal was if I donated she would be with me and vice versa. I was never alone and her support made a big difference.
30-year-old donor for sister with AML (leukemia)
When I learned I would be tested as a donor, I panicked. I thought donating marrow was a painful experience, but it turned out to be no big deal. Knowing I might save Kassie's life lessened my fears. No one went into much detail with me about my role as a donor until it was almost time for the harvest. That was hard, but I felt selfish for wanting to ask questions when everyone was worrying about what Kassie would go through. When she died, I was comforted by the fact that I had supported her physically and emotionally during her 203-day battle with AML. I strongly encourage everyone to join the National Marrow Donor Program registry of donors. For me, giving someone a chance to live was an extremely gratifying experience.
39-year-old donor for sister with ALL (leukemia)
I was devastated when I learned I was only a four out of six antigen match for Theresa. Fortunately, we found a transplant center that specializes in BMTs with mis-matched donors and they accepted Theresa for treatment.
It was hard to come to grips with the possibility that she might die. I decided that without my marrow she'd definitely die. With my marrow, she at least had a chance to live. Talking with other donors at a weekly support group helped.
Before Theresa's BMT we were typical sibling rivals. We worried whether we could put up with each other during the BMT. Now we're closer and can deal with things without major disagreements. The BMT was a life-altering experience for both of us.
16-year-old donor for sister with CML (leukemia)
I knew I'd be Gretchen's donor because we were so close, but I was shocked to learn what an integral part I'd play in saving her life. It all hinged on my bone marrow. That was a lot of pressure.
After the BMT, Gretchen and I grew apart. She was traumatized by the experience and was different from the Gretchen I knew and liked. As hard as I tried, I could not understand what she was going through. It took more than a year, but slowly things turned around. We had both become different people as a result of the BMT, and it took time for those two new people to become good friends again.
A friend was recently diagnosed with leukemia, and it brought back all the memories of Gretchen's BMT. I am now dealing with emotions that I buried when Gretchen was sick. As we give him support, it may actually bring Gretchen and me closer together than we already are.
49-year-old donor for identical twin sister with non-Hodgkin's lymphoma
You feel so helpless when someone you love has cancer. I was joyous when I learned I might be able to save Carol's life by being her donor. I worried that if the BMT failed it would be my fault. I knew that wasn't rational, but I couldn't help feeling that way. I prayed a lot and told myself I was giving my sister my best shot.
The medical team explained the procedure to me very well, though they underestimated how long I would hurt afterward. I was sore for three and a half weeks. For me, donating bone marrow was a very exciting experience.
31-year-old unrelated donor for an adult with CML (leukemia)
The National Marrow Donor Program (NMDP) did an excellent job of explaining what being a donor involved and put me in touch with another donor, which was helpful.
I'd never had surgery before and was a little nervous the day of the harvest. I was exhilarated after donating marrow and would do it again in a minute. Eighteen months after his BMT, Harry and I met in Dallas. Afterwards we talked every month.
This past July Harry died. That really hurt and it's still hard to talk about it without crying. He called a few days beforehand and said that three and a half years ago he wasn't ready to die. He thanked me for giving him those three and a half years of life.
34-year-old donor for sister with myelodysplasia
When Sue told me I was a perfect match I said, "Great! When can we do this?" The harvest was unreal. Afterwards I was able to go to Sue's room and see my marrow infused into her body.
Before the transplant, Sue and I talked about what would happen if she didn't survive. Without my marrow, her chances for survival were nil. If she had died, I wouldn't have felt guilty.
Being a donor is such a special thing - there are not a lot of opportunities to save a life.
23-year old-donor for brother with ALL (leukemia)
No one really explained much to me about what was involved in the harvest. I wanted to talk to another donor, but never got the chance.
After the harvest I was in a lot of pain. Todd is bigger than I am, so they took a lot of bone marrow from me. The biggest surprise was the nausea from the anesthesia. It continued for four days. I felt completely normal in two weeks. I have considered moving to California to be closer to Todd. I feel very protective of him and worry something might happen if I'm not around. I don't know what I would do if he died - I'd feel devastated. But I wouldn't feel guilty. I was blessed to have matched him in the first place and did as much as I could do.
10-year-old donor for brother with ALL (leukemia)
When they first told me I was going to be George's bone marrow donor, I was pretty nervous, but I was happy, too, that I could save my brother's life. I thought it would hurt a lot but it really didn't. I was a little sore after the harvest, but that was all.
George was worried about me after the harvest and I worry about how George is doing now. (George's transplant was 17 days before the interview.) He has really bad mouth sores and his blood counts keep going up and down. I asked the doctors and they said that was normal. I worry that he might die, but it wouldn't be my fault if that happened.
I'd advise other kids to go ahead and do it. It's scary at first, but once it's over it's O.K. I would do it again for my brother if I had to.
41-year-old donor for sister with myelodysplasia
When Helen first asked me to be a donor, I had no idea how difficult it was to find a matching donor. After I became educated about BMTs, I was grateful I could be her donor. I assumed it would be a painful experience, but the gravity of the situation outweighed all that.
The BMT team asked how I'd feel if Helen didn't survive. I said I wouldn't feel guilty. I wasn't responsible for the situation and had no control over the outcome. I felt like I had a broken tail bone for two or three days after the harvest. I was sore with a dull ache for about a week, but after that I was able to get around pretty well. What I went through was negligible for the opportunity to save a life.
28-year-old donor for brother with Hodgkin's disease
I flew to Wisconsin for a donor work-up after learning that Matt was sick. No one explained what was involved in being a donor. There was no emotional support.
I consulted the Mountain States Institute back in Idaho. I was pretty apprehensive and we talked through a lot of issues. "How would you feel if Matt died?" they asked. "I'm his only chance at living," I said. "I'd feel I did the best I could."
Two years later, though, things are different. Matt died within a year of his BMT. To this day I don't know why he died. I've been very sick for the last six months and worry that there was something in my marrow that caused his death.
I had a lot of complications after the harvest. I know my experience was very unusual, but donors should be told that sometimes long-term complications can occur.
23-year-old unrelated donor for woman with leukemia
I signed up with the National Marrow Donor Program (NMDP) registry in college because my girlfriend is diabetic and I've been around people with incurable illnesses. I thought if I had a chance to save a life I should. It's somewhere between a civic duty and an honor.
The harvest was a lot less painful than the NMDP counselors said it would be. The worst part was recovering from the anesthesia. I was back to work in three days and playing basketball in two weeks.
I think you donate marrow for two peopleÑyourself and the patient. As much as you are helping the patient, the feeling of accomplishment you get knowing you may have saved a life is worth the effort alone.
14-year-old donor for sister with leukemia
The harvest was not difficult for me. The doctors explained everything very well and showed me a video. It went just as they said it would. I had a little soreness in my lower back for one day. A week later I was playing soccer. Despite the fact that Toria died, I feel I gave her a year of normal life. The experience brought us so much closer together.
I would do it again for someone else who needed my help. All it takes is 24 hours out of your life to save someone else's life.
41-year-old donor for brother with multiple myeloma
I was thrilled when I found out I was a perfect match for Jeff. Having the opportunity to save someone's life is an extraordinary feeling!
The hospital staff did not give me much information about being a donor. I felt like a receptacle of bone marrow instead of a person. Being a donor is more than a physical burden. I felt I had an enormous responsibility on my shoulders. Jeff died following the BMT. Initially I felt responsible for his death. What helped me deal with my grief was knowing I gave him something no one else could give hope. I would definitely donate marrow again if asked.
I wish there were donor support groups. Only someone who's been a donor can really understand how another donor feels.
48-year-old donor for brother with multiple myeloma
I went into the harvest feeling like a hero because I thought there were two possible outcomes: Kevin would be cured or he'd live another five years. I wasn't prepared for the possibility that he might not walk out of the hospital. I really paid for that emotionally.
I wish there was a support group for bone marrow donors. It would be helpful to talk with other donors and share experiences.
I would be a donor again, even for an unrelated person. It is a beautiful experience. I'll never forget going into Kevin's room after he received my bone marrow. He got up on his feet and said, Oh my gosh, I feel so wonderful. Thank you.
24-year-old donor for sister with CML (leukemia)
When I first met with the BMT team, they gave me a general idea about what was involved in the harvest. I didn't care at that point. We were all too worried about Chalane. Closer to harvest time they gave me more details and bent over backwards to answer my questions.
I thought a little about what would happen if Chalane didn't make it, but the doctor told me, I don't think we even need to talk about that. Chalane had tremendous faith and was sure she would survive. If the BMT had failed, I think I would have felt some guilt. I would have wondered whether there was something I should have done to make my bone marrow better.
Being a donor was a very positive experience. Giving life is the best gift you can give anyone.
44-year-old donor for brother with AML (leukemia)
The BMT team did a good job of explaining the harvest procedure to me, but didn't get into much detail about the emotional impact of being a donor. I found a few donors in the family support groups to talk with, and we shared each other's accomplishments and losses.
There was a tendency for donors to blame themselves if their siblings didn't make it out of the hospital. One guy in his early 20s said, "I gave my brother the gift of life. He wasn't supposed to die. I told him, "You gave him every opportunity to live. Sometimes things just don't work out." I gave other donors support and that helped me later when George died.
Questions still come up in my mind - all the "what ifs." I've decided I did the best I could and would do it again. My suffering was small compared to the chance I gave George to live.
31-year-old donor for brother with CML (leukemia)
It was a thrill when I found out I could be Marty's donor. It was like a prayer had been answered. The doctors explained what the harvest would involve and showed me the equipment. I didn't have a lot of pain except when my 6-year-old jumped on my back the day after the harvest. That nearly put me through the roof. I would do it again. To me it wasn't a big deal.
I never thought about the BMT failing. I refused to let that bother me. I knew I had no control over the outcome. If it worked, it worked.
Marty and I have always been close, but there's a closer bond now. He used to call me his little brother. Now I consider his transplant day his birthday and I call him my little brother.
Being a donor was a very positive experience. I wish I could do it again.
55-year-old unrelated donor for child with ALL (leukemia)
Ever since my daughter had a BMT for leukemia, I've wanted to be a bone marrow donor. I knew the National Marrow Donor Program (NMDP) took you off their donor list after age 55. A few months before my 56th birthday I was sitting in the kitchen and said, "God, don't you know I'm getting older? Find someone who needs my marrow." Four days later I got the letter asking me to be a donor.
I sent a note with my marrow and Audrey's mother wrote me back right away. We kept up a correspondence and this year their whole family visited. It was wonderful.
I'm so glad I got a chance to give life. There are no words to describe this beautiful experience.
21-year-old donor for brother with multiple myeloma
In January Chris and his wife told me he needed a BMT and explained what would be involved in being a donor. At that point I didn't really care. I would have done anything to save his life.
I worried I'd feel responsible if Chris's BMT failed. I prayed a lot and said, "Lord, you saw fit to let me be a donor, I'll leave the rest in your hands. "I was at peace when I went in for the harvest. Having the key to save someone's life and not using it would have been harder for me to deal with than going through the harvest.
Chris and I were always close but now we're closer. He teases me about having these terrible urges to go on shopping sprees since he got my marrow. We have a kinship that can never be destroyed.
41-year-old donor for sister with ALL (leukemia)
When we found out Annemarie had leukemia, I flew to Zurich where she lived to be tested as a donor. There wasnÕt a dry eye in the room when the doctors told us I was a perfect match.
I felt honored to be a donor and terrified something would go wrong. A doctor assured me that whatever happened, it was out of my hands. "It's up to Annemarie's body and God," he said. Intellectually I knew that was true, but it was hard to put those feelings aside.
Annemarie and I are now closer than ever before. It's an incredible feeling to know that you were responsible for a person walking out of the hospital, hugging her husband and kids, and breathing the fresh air.
10-year-old donor for brother with AML (leukemia)
I was ready to do whatever they said to help save Scott's life. The night before the harvest, the nurses explained what would happen. I wasn't nervous. After the harvest I had a little bit of pain in my lower back when I tried to lay down. It lasted for two days.
When it was all over, I felt that I had done something pretty special for Scott. We became closer, although I'm not sure he understands yet exactly what happened. He was only 7 at the time. He told me once he would donate bone marrow for me if he could.
I'd definitely do it again. It was not a big deal.
The electronic version of this document was created by NYSERNet, Inc. through a grant funded by the New York State Science and Technology Foundation as part of the Breast Cancer Information Clearinghouse.