apherisis stem cell donor

[lucy goodwin]

I am a 66 year old small boned woman.  My brother wants me to be a stem cell donor for him.  He is much bigger than I am and lives 3000 miles away.

I would like to hear from a woman my age or older who has gone through this process for a bigger person and  far away from home.  How many times were your cells harvested?  And for  What side effects and later effects did you feel?  How was recovery? 

My brother is divorced so I do not have a sister-in-law to rely on.  Our daughter is expecting her first and our first grandchild at the same time.

[sherri]

Lucy,

Not sure how many stem cell donors post on here so I thought I would just share a little of my husband's experience as a stem cell donor ( I am a living kidney donor). My husband donated stem cells through apheresis about a year and half ago. He is 53 years old now. He matched someone on Gift of Life. He does not know the recipient. All we found out was that it was an international donation and the country would not allow any information to be released. My husband, is an avid runner and in pretty good shape. He does take medication for high blood pressure and high cholesterol (bad genes!).

Five days before the treatment you need to take medication called filgrastim to stimulate bone marrow production. It is an injection which you can give yourself if they train you or they have someone come out daily to administer. Check with your coordinator. My husband and I are both in health care so this wasn't an issue. He injected himself. The side effect of the medication is bone pain and feeling very achy. He said he did feel it especially by the fifth day. Tylenol or ibuprophen should help.

Gift of Life wanted him to go to Virginai for the procedure but we live in Baltimore and have two well renowned institutions, University of Maryland and Johns Hopkins who both do transplants so he told them if they want his donation he would do it at University of Maryland. He is also a professor at Maryland and has a good friend who is a hematologist oncologist who helped him through it. So Maryland collected his sample and took care of getting it to gift of life. So in terms of traveling why can't you do the apheresis at a hospital near you and they ship it to your brother's hospital. This may be a different situation in your brother's case, but my brother, my kidney recipient came from NY to Baltimore for his surgery and went home after 3 weeks. We did this pre dialysis so he was able to travel and not too sick. Does your brother needs a stem cell transplant immediately, not sure what his health is like now, or if this too is preemptive to a more serious condition. But it doesn't hurt to explore options.

My husband did recommend that in the future he would ask for Ativan or something to relax during the apheresis as it was just so difficult to lie still for so many hours. If he moved his arms too much the line would get kinked and stop flowing. He is also not a very patient patient. All in all he felt fine. Went to work the next day. Felt tired but his blood counts came back soon after the treatment. His cells were harvested only one time. We don't know what happened to the recipient if he passed away so another treatment was not needed or if he was cured and therefore another treatment was not needed.

Ask the transplant coordinator for a donor buddy so you can talk to others from that hospital who have done this. It may be helpful to get an idea of what to expect when speaking to someone who has actually gone through it.

How is your relationship with your brother? Sometimes in family donations there is a lot more going on then the actual surgery or procedure. Talking to a social worker or psychologist who is familiar with transplant might be helpful in helping you sort out all your feelings. Sibling relationships are sometimes difficult and a crisis brings up a lot of feelings that lay dormant for many years. I did find speaking to a social worker a safe place to vent and have my feelings validated.

Good luck to you and your brother. And congratulations on becoming a new grandmother.

Sherri

[lucy goodwin]

Thank you for this very thoughtful and thorough response. I found it very helpful.  If I am a match, I may press to have the stem cell donation done in a hospital here in Atlanta where I have a doctor and home and support.  I don't know why the nurse said I had to be there in CA (perhaps for their convenience).  For me, just the flying back and forth and staying in a hotel adds stress.

  My brother thought within a year for the donation, but when I talked with the nurse at Stanford in CA, she said sooner because his last tests had been interpreted incorrectly. 

My biggest concern is my size and age for doing this.  If I had to have the procedure for 2 or 3 days in a row, I am assuming they would have to use a central vein as well as ones in my arms.  I do not heal quickly.  My routine physical draw of blood caused my arm to be black and blue for 2 weeks.

I would like to help my brother if the medication at my age will not trigger a bad outcome for the rest of my life.  I still need to find a "senior citizen" small woman who has done this for a big man.

[lucy goodwin]

PS> My brother has myelodysplastic syndrome.

[sherri]

Lucy,


Have you spoken to your your own physician who knows your history a little bit better. you may also want to seek out a second opinion from a doctor or other healthcare provider who is not involved in the transplant at all. Get some evidence based research about older patients, small framed women, hard sticks etc to see what has been studies. You may be able to find a "another small older woman" but that will only anecdotal not based in evidence.

Sounds like you are having a hard time making this decision and I understand that. Donation, whether a solid organ or other part is a big decision and often there is ambivalence, trepidation, love for your family member all wrapped into one. Have you spoken with your brother? Are there others testing for him as well? Is he part of Gift of Life or other group where an unrelated match might be available?

Keep us posted and let us know how things go.


Sherri