Stem Cell Harvesting; a Donor's experience

[thechosenone]

Late October 2011 started taking Neupogen; self-administered dosage 2 injections per day for 4 days. On 2nd day suffered extreme bone pain, and in upper LHS of abdomen. Phoned liaison doctor for advice, assistance. Assured that abdominal pain was not due to enlarged spleen. Dr not interested in checking me out. Suggested I go to local doctor if I still had concerns.
Stem cell harvest was conducted on 5th day as scheduled. I produced an extremely high stem cell count, a record for 2011, which was excellent news for the patient.

I was advised side effects would disappear after approx 10 days.

I spoke to the same doctor 6 weeks later to advise him I was still suffering the after effects of this procedure. He reluctantly acknowledged that they get approx 1 donor per yer who suffers long term side-effects.
I asked why they had not checked on my welfare post harvest. I was advised that the hospital does not have a Donor follow up procedure, because enough research has already been conducted worldwide.

I saw my local GP, and had scans done to check the condition of my spleen and other organs. All showed up OK, but was advised that the pain I experienced while taking Neupogen was consistent with having an enlarged spleen. This was performed at my cost.

I suffered chronic fatigue and chronic bone pain for over 3 months; slept 14 hours a day, lost 14 kg with no activity. Had to to use 3 months sick leave.

I have had short-term relapses of fatigue, and suffer recurrences of the bone pain.

And then there is the emotional fallout to deal with. Such as
Being told how lucky am I, to have the opportunity to do such a wonderful thing for my brother.
Stress and pain I experienced not being acknowledged by the recipient and his family.
The emotional stress the process has had on my own family.
Not being treated with respect by the Hospital; discarded.

I would have liked to receive detailed technical information information about my brother's illness, and the stem cell harvesting procedure, and in a timely manner, not just a day beforehand.

I was willing to donate, it is consistent with my beliefs. I would have done so whether or not it was for a family member.
Sure, I am disappointed with some aspects of my donor experience, but I have no regrets for having done it.

[Marlene]

I'm so sorry that you had such a bad experience with all of this. And to make matters worse, to have the medical establishment dismiss you like that, well I don't know what to say about that. Too many thought running through my mind.

Being a match for someone does not make you the lucky one. It's a noble act on your part and your brother is lucky to have you and not just for your bone marrow. I'm sure he appreciates what you have done for him.

I hope you are feeling better and if not, pursue this with your doctor or get a second opinion. We don't hear much from the donors and assume that most recover quickly. I just heard a piece on the news where a doctor made a feeble attempt at explaining BM donation. She reduced it down to "it's like giving blood". There is a risk involved for the donor and that should be acknowledged.

[Lbrown]

I'm so sorry you had such a bad experience too. Marlene is right in that you never hear about side effects for donors and what could possibly happen to them. It's a good reminder that there are potential side effects associated with any drug.

I hope you are feeling a lot better now.

Deb

[donna j.]

I recently had a discussion with a family member following the Brian Williams special the other night regarding paying people to donate bone marrow or stem cells. I believe there are so many issues not addressed and could be improved upon:
1. Why not offer to pay individuals to donate? If it could make more transplants possible through more donations and save more lives? We pay for surregacy, sperm, platelets, blood, plasma, etc.

2. I believe not informing potential donors of the possible side effects of donating and not educating them upfront of the responsibilities and seriousness of registering is doing all a disservice. "Its just a swab to register" or its just like donating blood" (The show said that 50% of all potential donors when contacted to donate, back out. I understand They can back out up to the moment they begin the process.) One woman on the show said her brother died, when the donor backed out 10 days prior to transplant.

3. A representative for Be The Match, said they had 9 and a half million potential donors on file and did not need more, so no need to look into a reimbusement program.( But if we still have people needing transplants and not getting them, we obviously don't have enough matches).

4. Another family member questioned, why not ask at the hospital,when a woman gives birth, if she would be willing to donate a portion of the umibical cord/placenta for a future transplant for a person in need of a transplant and could benefit from a cord transplant? Also in addition why not make the saving and storing of your child's more available and affordable for future family use, if necessary?

[thechosenone]

Dear Marlene and Lbrown,

Thank you so much for you kind supoort. Even though the SCH occurred in late October 2011, emotions are still pretty raw. I have been procrastinating re following up with the Hospital re my experience.

And to Donna J, you make some valid points including about what aspects should be considered when providing support to donors.
In my case I am a permanent employee, and therefore eligible to accrue sick leave. I needed to use 4 months sick leave (not 3 months as I previously mentioned). As we grow older, the likelihood of needing sick leave increases. And I am one of the lucky ones.
What about those who are self employed, and have family/friends who rely on your care? How would they survive in these circumstances.

Donna, your point that the Hospital should provide relevant information to the donor, including potential side effects, is most pertinent. The Neupogen package I was given contained a pamphlet that included information on side effects. It stated that I should contact a doctor immediately if I had severe pain in upper LHS of abdomen, as it could be a symptom of an enlarged spleen. And as you know, the doctor dismissed this out of hand.

I was also told that the procedure is just like donating blood.
Stem cell harvesting involves your whole circulatory system being recirculated at least 4 to 5 time through the stem cell extraction machine.
The donor procedure was trivialised.

I would love for other donors to relate their experiences, including how they were treated by the Hospital staff (ie as a person or just a donor), how well the Hospital prepared you for the procedure, level of support you were given before during and after the procedure, and any side effects experienced.

[Lbrown]

Well, with one exception. You don't get neupogen when you donate blood. I did some research and it is produced using e. coli, and people can have reactions to it.

I'm in Canada and people are not paid to donate blood here. I think there should be compensation if you had to be off work for 4 months due to illness caused by the neupogen.

I had neupogen myself once a long time ago.

Deb

[Lisa V]

Originally Posted by thechosenone

I asked why they had not checked on my welfare post harvest. I was advised that the hospital does not have a Donor follow up procedure, because enough research has already been conducted worldwide.

This is the part that made my jaw drop. Isn't the point of follow-up on any medical procedure to make sure the patient is doing okay, not to add to their own research? That just boggles the mind.

I too appreciate hearing a donor's perspective. We don't hear enough of that. I am also mystified by the lack of incentives given to people to donate either blood or marrow. I'm not sure paying people outright to donate is necessarily the right approach, however. That used to be done with blood donation, but it was attracting the wrong sort of people for the wrong reasons, so that's been discontinued. There are other incentives that could be offered, however, such as a credit to the account of a friend or loved one. Depending on your insurance coverage, blood products can cost a lot of money to receive. When my husband was reliant on transfusions, we had lots of friends who would have donated if that donation could have been credited to his account, but our local blood bank doesn't have that sort of program, so we had to pay full price and the blood bank lost out on a lot of donations.

And why are potential marrow donors being charged to join the registry? I know that Be The Match has one free month, but if they really want to encourage more registrants, they should waive all costs for joining, testing, donation and follow-up care. How can we expect people to give selflessly to a stranger, and then ask them to pay for it? It makes no sense to me.

I donate blood and joined the registry because I have first hand knowledge of how important it is, but most people don't. And I agree that as long as there are people who can't find a perfectly matched donor on the registry, there is a need to recruit more, particularly people of color and/or less common ethnic combinations.

[Angela61]

I had an awful experience...my brother (with whom I had not had a very good relationship prior to donation) ended up suffering horribly and dying from host/graft reaction. His wife then proceeded to cut me off from my nephews, the only connection I had to my brother. This situation has also caused irreparable damage to my relationship with other family members. I live with guilt over my cells "killing" my brother and nobody in my family understands. Also, the hospital (Tampa Cancer center) treated me with NO respect. One of the nurses commented to me "if you're so worried about the care your brother is receiving, why don't you move back to Florida?" I had lived in NC for about ten years and had children in school and a job and a husband with a job in NC. If I had it to do over again, I would NOT have donated. My brother and his family and my mother pretty much disappeared after it all was done and I ended up with emotional devastation and guilt and he died anyway.

[Chirley]

I'm sorry that you lost your brother and that you feel abandoned and guilty. It's not supposed to end this way.

Just think of it the other way round. You had refused to donate and he died! You would still have been blamed and abandoned by his and your family, your brother would not have had a chance to live and you would still feel guilty. You need to know that you gave your brother a chance at life and you deserve to have that recognised. If his family and your family can't see it that way yet, it's because it's their way of grieving (not necessarily a healthy way of grieving though).

Sometimes stress in a family can unite and sometimes it divides but if your family had issues prior to the donation and his unfortunate passing, it's likely going to be worse afterwards unless you have family counselling.

Remember, you did the right thing even if it didn't have the right outcome.

[thechosenone]

Firstly, I really feel for you Angela, about the way you were treated by your family, when you subjected your healthy body to a stem cell donation.

The reality is that your extended family would most likely have treated you the same way if your brother had survived. Because that's the way they are. They are not the type of people you want to associate with. So think of the alienation as a positive. They are not the type of people you would choose to be around.

Surround yourself with good supportive friends. You will be surprised how willing they are to help you through difficulties such as this. Also, I strongly recommend you seek professional counselling; accept the fact that what you have experienced is something few people will have experienced in their lifetime. The part that is so very difficult to deal with is being vilifiied for doing someone a good turn. I know, its taken me to some dark places.

From my experience, I'd expect you are feeling isolated and lonely, and possibly clinically depressed, that is, you are unwell. And just as your brother received medical support for his illness, you have a right receive professional help to get your life back.
And don't be shy about discussing your feelings with trusted friends. You will be surprised to learn how much they care for you, and their willingness to help you through life's challenges.

I was going to give those of you who have followed my thread a detailed citation of what I have experienced in the three years following my stem cell donation to my brother, but I don't think it would be helpful to me or you if I did.

Briefly, my brother is still alive, and in reasonably good health.
I suffer from chronic fatigue, PTSD and clinical depression. And I was unable to return to work. So now I'm a retiree. I have survived all this through professional counselling, love and support from wife and children, my wife's family, and very dear friends.

Hope this helps.