Would you consider weaning to donate bone marrow?

[JudiAU]

I recently was matched as a possible blood marrow donor.

One procedure is surgical with marrow extraction from my hip (90 minute outpatient with general anethesia; no drugs; admitted in case of complications) with a fairly long recovery time of 4-6 weeks of lower back pain. I'd miss some work. Complications could be quite difficult for my family.

One procedure involves filtering my blood to remove stem cells; prior to the blood filtering I am required to take a drug regime for 5 days that is incompatible with breastfeeding. They estimate 8 days with no nursing. The filtering process takes about six hours.

LO is almost 16 months, I co-sleep with her at night and she nurses a few times. DH sleeps in another bed and has toddler rangling. He has no nightime skills with her; I think he would be horrified with the idea of trying not to nurse her/him handling her. I pump at WFT and she drinks about 10oz of bm when I am away and nurses on demand when I am home (probably gets less bm). We went through a rough nursing patch awhile ago but that seems to have resolved itself. My goal for nursing is 2 years, not necessarily CLW, but not much shorter either. Hopefully I'll be pregnant towards the end. Ds nursed until 22m when he self-weaned due to pregnancy.

In the short term I said I was unavailable for the second option but would consider the first. I had originally specified the second option because I didn't know about the drugs.  I am in a real quandry about what to do. I would find it really painful to decline to donate. I paid for the intial testing myself because I believe strongly.  Some sick person really needs help, maybe even a child. And yet my own daughter has needs too-- I believe she has a right to optimal nutrition (and stem cells)! of her own. My very pro-family mom and sister would probably suggest I wean if I could help save a life because the most important nursing period is over.

I'd be interested in some other perspectives and or related experience.

[ASusan]

So, to be clear, you're not donating to someone specific (like a family member)? It is a donation to a "bank"?

Here's my initial thought - the need for bone marrow donation will always be there. Your DD will only need BF for a (relatively) short period in her life, and it is still that time. You, yourself, have a 24-month nursing "goal." That is only 8 months from now.

You can donate at a later date.

[_ktg_]

I'm familiar with both processes and the risks involved with some of the research I oversee, I think I would need to know how much of a match I am - like 6/6 HLA typing or 4/6? Big difference for transplanting and more risks to the recipient.   Are you sure for the first option they still won't give you any growth stimulating factors to pump up how much marrow you have in your hips?  Will they provide consent forms or information documents for either option so you know what you are getting into?

I'm still nursing - but starting to wean my 22m DS (we're only at night and maybe 2x during the night).  I think this opportunity presented itself to me, I would give us a bit of time (like 3 weeks) since we're already in the process of weaning and say I'm available for either option 1 or 2 after that. 

Good Luck with your decision!

[Breathless Wonder]

This is an issue that strikes very close to home for me.  Last month, a good friend of mine died because 4 donor matches refused to donate (for whatever reason) between last December (when the first was found) and when she passed in mid October.  She was 37.  She left behind 2 young daughters.

I don't know what to tell you to do. On one hand, you have to take care of your own family.  On the other hand, I've witnessed first hand the devastation my friend's family has gone through.

Registering as a bone marrow donor is a VERY serious thing, and a LONG time commitment (until your 60th birthday). 

The only thing that I ask of you, is make your decision quickly.  The longer you wait to make the decision, the more hopeful the recipient and their family will be, and the less time they will have to find another match. 

[JudiAU]

Bone marrow donation is to a specific very sick person who is matched to your genetic profile. Usually the person is going through chemo/radiation that damages their own marrow. The new marrow recolonizes their body and can often save their life. In fact, their blood type will often change to match the donors.

So there is a really sick person out there whose life could hang in the balance.

[JudiAU]

Originally Posted by _ktg_ 

I'm familiar with both processes and the risks involved with some of the research I oversee, I think I would need to know how much of a match I am - like 6/6 HLA typing or 4/6? Big difference for transplanting and more risks to the recipient.   Are you sure for the first option they still won't give you any growth stimulating factors to pump up how much marrow you have in your hips?  Will they provide consent forms or information documents for either option so you know what you are getting into?

I'm still nursing - but starting to wean my 22m DS (we're only at night and maybe 2x during the night).  I think this opportunity presented itself to me, I would give us a bit of time (like 3 weeks) since we're already in the process of weaning and say I'm available for either option 1 or 2 after that. 

Good Luck with your decision!

 I don't need the drugs for the operation. And yes, I am sure there will be consent signs up the wahzoo.

[kittywitty]

I agree with ASusan. I would not, personally. My child comes first.  I disagree the most important nursing period is over, and you hoping to be pregnant also puts a twist on it-I don't know if I'd take that risk with the drugs and procedure. 

[prothyraia]

I'm on the donor registry, and nursed my two children to 2 1/2 and just shy of 4 (mother-led weaning for both at the same time without any issues).

In your situation, I wouldn't wean to donate, but I would strongly consider the surgical option.  It is a tough decision though- I like to think I would be willing to put up with some personal suffering in order to help save someone's life.  I don't think I would be willing to put my children through something negative, though, especially when they can't understand why.

[_ktg_]

Originally Posted by JudiAU 

Originally Posted by _ktg_ 

I'm familiar with both processes and the risks involved with some of the research I oversee, I think I would need to know how much of a match I am - like 6/6 HLA typing or 4/6? Big difference for transplanting and more risks to the recipient.   Are you sure for the first option they still won't give you any growth stimulating factors to pump up how much marrow you have in your hips?  Will they provide consent forms or information documents for either option so you know what you are getting into?

I'm still nursing - but starting to wean my 22m DS (we're only at night and maybe 2x during the night).  I think this opportunity presented itself to me, I would give us a bit of time (like 3 weeks) since we're already in the process of weaning and say I'm available for either option 1 or 2 after that. 

Good Luck with your decision!

 I don't need the drugs for the operation. And yes, I am sure there will be consent signs up the wahzoo.

sorry I wasn't more clear - I meant you should have an opportunity if you ask right now to review the process/consent forms if even you decide not to donate.

Edited by _ktg_ - 11/16/10 at 5:42pm

[MountainMamaGC]

Are you sure the drug is incompatible with nursing? Have you checked Hales?

[mambera]

This is SUCH a tough one.

I actually faced this exact same dilemma.  The registry called me because I was a potential match.  I went through their whole questionnaire and at the very end they asked whether I was nursing or not.  Honestly I hadn't even thought about it until then. 

I really struggled with this.  Really.  It is about a real individual sick person who is out there waiting for a transplant.

In the end I decided I was not available to donate (and the registry personnel were surprised I was considering it actually, they assumed I would refuse right off).  The thing that clinched it for me was that it wasn't clear whether I would be a true match or not.  They wouldn't go through the complete testing unless I was willing to be a donor.  Also DD was still under 12mo at that time.  I think with a baby over a year I would have been more likely to wean for the transplant.

Also, from what they said it sounded like the drugs were necessary even for a bone marrow aspiration.  That's interesting they told you that was a nonmedicated option.  ?  I would totally consider that option actually.  

Also if it is a short period of time (5-8 days) perhaps you could pump and dump?  At 16 mo your DD will probably pick it right back up after such a short time.

Anyway hugs to you, this is an incredibly difficult decision.

[anj_rn]

Last year I would have said keep BFing.  Then a friend's 5 year olf needed a marrow transplant and had to wait months for a match.  Now I would go with the pump and dump and option 2.

[4Marmalade]

I am currently being tested as I am a possible bone marrow match.  I went last week to get blood drawn.  My youngest nurslings are 2-1/2 years now though and are already weaning so it was an easier decision for me.  Even when they were not weaning a few weeks ago I was willing to go ahead with it because I knew they would be OK not nursing for a few days.  All the best in making your decision. 

[4Marmalade]

I am currently being tested as I am a possible bone marrow match.  I went last week to get blood drawn.  My youngest nurslings are 2-1/2 years now though and are already weaning so it was an easier decision for me.  Even when they were not weaning a few weeks ago I was willing to go ahead with it because I knew they would be OK not nursing for a few days.  All the best in making your decision. 

[~pi]

I would personally find out what my real options are before making a decision. E.g., Is the drug truly incompatible, or is that just because it hasn't been tested? If it's truly incompatible, is there a reason you can't pump and dump for the 8 days and then start nursing again? At 16 months, I would explore those kinds of options before considering weaning.

A friend of mine is alive because of a bone marrow transplant. I think you are wonderful for signing up and for grappling with this decision.

[Toolip]

op, do you have any updates?

[texmati]

I would do it. It seems that you wouldn't have to wean completely, but for a short time. I'd also try and find out more about the person you are donating to, chances of success etc.

Although it's not the same, my son stopped nursing due to pregnancy. I was just reflecting that this was one of the many sacrifices he'd make for his sister as time goes on. I wonder how you DD would feel as an older child or adult, that she 'helped' in doing something so wonderful for someone else.

[GoBecGo]

I'm on the register.  I would do it.  Because i've had problems with supply in the past i'd probably go with the surgical option.  Good luck with your decision.