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Author Topic: Which daughter should donate?  (Read 6882 times)

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Offline lisam

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Which daughter should donate?
« on: May 23, 2011, 02:35:13 PM »
My dad needs a kidney and both my sister and I are blood/tissue matches.  We have been told that only one of us may continue to the next set of tests.  We are both having a very hard time deciding which of us should donate.  We both want to do it and we wish that a doctor could make the final decision.  I think that neither of us wants to have the guilt of being the sister that didn't donate.  Has anyone had any experience with this?  Any help in making this decision would be greatly appreciated.

Offline Clark

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Re: Which daughter should donate?
« Reply #1 on: May 23, 2011, 03:42:01 PM »
Dear Lisa,

  My spouse and I faced this challenge, and I empathize with you and your sister. Medical advice certainly can help you decide.  Even though it is likely insurance reimbursement considerations that limit further testing of more than one at a time at the transplant center, you can both discuss the possibility of becoming a donor with your primary care physician(s). Even if that doesn't result in a telling decision factor, you can be candid with your donor advocate(s).

  You say nothing of other considerations than your health.  Are your ages, socioeconomic situations, and relationships with beloved dependents helpful points of difference to discuss?  You can say that they don't matter, but family dynamics and one's networks of friends and colleagues are complex and surprising.  Best wishes, and keep talking to each other.  It's the only way you'll resolve this.

P.S.: My spouse went first and was deferred, and I eventually became our friend's donor.
Unrelated directed kidney donor in 2003, recipient and I both well.
620 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline sherri

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Re: Which daughter should donate?
« Reply #2 on: May 23, 2011, 04:03:28 PM »
This is not uncommon. I have heard of several stories of the children "arguing" over who gets to be the one.

I am assuming you have done the blood tests only and on an HLA scale you are both about equal. In that case, you may want to list the other criteria that come into play when becoming a donor. You can take into account family stability, insurance,time off from work, finances, spouses (is there a spouse who is more uncomfortable with the decision), dependents who rely on you. You can also think about health issues, has anyone already had surgery, any history of illnesses etc. You can also ask to meet with the social worker and maybe after speaking with you they can shed some light on this decision.

While the donor may get the accolades it takes more than a kidney to help a patient with renal failure. The other sibling who does not donate can certainly be available to help care for the sibling who does donate. They will need help after the surgery with household chores, shopping, meals, child care if necessary etc.

If not a good old drawing straws is a plan. But make sure you know if the short straw "wins" or "loses".

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline lisam

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Re: Which daughter should donate?
« Reply #3 on: May 23, 2011, 04:15:04 PM »
Thank you for the responses.  We have been working through all of the issues you both talk about.

My sister and I are about the same age, 37 and 41 respectively.  Our finances are about in the same shape (not great), although she would be able to draw short term disability and I wouldn't.

We are both at risk for arthritis (I already have the beginning symptoms), which concerns me, but I've switched to Tylenol and I'm managing fine.

For me, the defining issue is that she has an 8 month old and 4 year old.  I have a 4 year old and 7 year old.  If we donate in the next couple of months (which I think we will probably need to do based on my father's rapidly declining health), she won't be able to pick up her daughter for several weeks following the surgery.

Plus, I have a considerably larger support network than she does, including a MIL who lives close by.  Unfortunately, neither of us live in the same state as my parents, but she lives within driving distance (5 hours) and I don't.

My sister suggested a coin toss and I have to admit that it's starting to look good.  However, maybe a social worker could help us work through some of the issues as well.

Thanks again.

Lisa

Offline lawphi

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Re: Which daughter should donate?
« Reply #4 on: May 26, 2011, 02:17:53 PM »
In regards to HLA, I would chose the sister with the most HLA Class II Antigens.  A transplant with a double HLA DR match seems to last longer than a mismatch DR.

I am a five antigen mismatch to my husband and we share an HLA DR.  My mismatched HLA DR is very common in the population and my husband's first kidney had the same DR matches as me.  My kidney would not have lasted too long for him with the prior antigen.  I would consider the HLA profile and the population to prevent developing an antibody to a very popular and common antigen.

Also, it is possible to only have five antigens or three.  Some antigens are considered dominate and may wipe the other antigen out.  HLA A 2 is an example.  If you had an HLA A 2 antigen and your father was HLA A 2, 4, you would not be considered a mismatch on that antigen level and there would be no additional antibodies developed. 

I have spent way too much time researching HLA matches. 

You both have compelling reasons to donate and to not donate.  I would not rush into a donation to avoid dialysis.  IThere are so many great home dialysis options to consider that will get your dad in the best shape possible prior to donation.  My husband used NxStage home hemo and bounced back immediately after his transplant.  The extra time would allow you to reflect and make the right decisions.

I am donating out of state as well.  I estimate that it will end up costing $1200 for airfare and hotel. 
Bridge Paired Exchange donor on behalf of my husband (re-transplant) at Johns Hopkins.

Offline PhilHoover

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Re: Which daughter should donate?
« Reply #5 on: June 05, 2011, 08:57:16 PM »
I would recommend both of you talking to your respective pastor(s), minister(s) or priest(s)....

They can help you with your dilemma.  Donating is not just a medical and biological decision...it involves your finances, your emotions, your family situations, and you MUST HAVE a strong support network for several months afterwards....

Blessings on you.
Donated to a former college professor, October 28, 2009. Would do it again in a nanosecond.

Offline Karol

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Re: Which daughter should donate?
« Reply #6 on: June 05, 2011, 11:56:42 PM »
Isn't your dad lucky to have 2 potential living donors who match! Congratulations!
The reality of kidney transplants is that they don't last forever. Hopefully this is not the case - but you both may be donors depending on how long the first transplant lasts. I hope you figure out the best way to decide. Good luck.
Daughter Jenna is 31 years old and was on dialysis.
7/17 She received a kidney from a living donor.
Please email us: kidney4jenna@gmail.com
Facebook for Jenna: https://www.facebook.com/WantedKidneyDonor
~ We are forever grateful to her 1st donor Patrice, who gave her 7 years of health and freedom

 

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