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Author Topic: Conflicted - who should donate first, wife or brother  (Read 5950 times)

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Offline Crowseye

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Conflicted - who should donate first, wife or brother
« on: January 03, 2016, 04:17:44 PM »
Hi,
I am a new member and potential kidney donor for my brother. I thank you all for this valuable resource. It has been helpful reading comments as I go through what has become a very difficult process.
My brother has chronic kidney disease and is now on the wait list. When my brother told about his kidney three months back he was not yet on the wait list. At that time he did not bring up the subject of kidney donation though I knew from the media that living kidney donation was something that was available. In the last month his kidneys have gotten worse. I took the initiative myself and contacted the local kidney center and anonymously had myself tested. I am not a perfect match, though I am compatible. The center still suggested a paired exchange to find a better match.
But here is the kicker. My brother's wife is not a perfect match, but she is also compatible and a candidate for a paired exchange, but my brother does not want her to donate! She is in perfect health and is 15 years younger than me (40 vs. my age 55). She also earns an income more than double what I earn cleaning offices with my spouse. We are self-employed, while she works privately as a message therapist. My brother is currently between jobs, but over the last 20 years has worked in management making a salary that is also double what my spouse and I make. He and his wife have apparently saved nothing and this fact combined with the likelihood that his wife will be unable to return to work for some time and the risk that through some post-operative complication she may be no longer able to perform message at all is the main reason he does not want her to go through the kidney donation. He told me this flat out a few days back when I asked him about her doing the paired exchange.
As I write this I realize that some of you may find this petty or "just about the money" on my part. But I am 55 and my partner and I have struggled on our relatively low income to save just enough money for our retirement. Taking two months off work is serious. We live in Canada and while the direct hospital costs of kidney donation are covered by the government, self-employed workers are not compensated for loss of work or long term disability. We will lose a few thousand dollars in savings and possibly lose some of our regular customers permanently which will cause even more long term financial hardship for us. Never mind the daunting possibility that pain and fatigue or other post-operative complications will leave me permanently unable to do my job. I was willing to accept this health risk and financial hardship if I was the only compatible donor, but it seems hugely unfair to accept this health risk and financial burden when my brother's own wife is also a suitable donor.  Its like my brother has decided that he would rather I or someone else bear the health risk and financial cost.
This decision has taken a toll on myself and my spouse. I have had trouble sleeping and I don't know what to do. I don't want to see my brother suffer and I don't want him to die, but this feels like emotional blackmail. When I told the donor nurse at the clinic her response was that I can choose to not donate at any time and while this is a "difficult family matter" the clinic can't be involved in that part of the discussion. But they are "part of the discussion" because they are pushing a procedure which involves our lives and our family. This is incredibly stressful and frustrating.
If anyone has had a similar experience I'd be interested to hear about it.
Thank you
M
« Last Edit: January 03, 2016, 04:26:05 PM by Crowseye »

Offline CK

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Re: Conflicted - who should donate first, wife or brother
« Reply #1 on: January 03, 2016, 06:06:51 PM »
Crowseye - for what it's worth, I was 46 when I donated and was also self-employed at the time (though not in a field that required physical exertion of any kind).  I was back to work in 3 weeks, and it could have been 2 - I took the extra week to help out my recipient, my husband, who was not self-employed and was back to work in 3 weeks even after a double nephrectomy and transplant.  So your recovery time will likely not be two months (though there is no guarantee of that, of course).

The larger issue is that you have to decide what is best for you and your family regardless of what your brother wants.  At my transplant center they told me that they would, at any time, tell my recipient that I could not donate for medical reasons if I changed my mind.  I would have simply told him myself if that were the case, but it was nice to know that option was there. While I understand your brother's desire to protect his family, ultimately, either of you donating to him is a gift, not an entitlement.

I hope you will seek some counseling if necessary to come to the best decision and not give in to what you feel is emotional blackmail.

Offline Fr Pat

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Re: Conflicted - who should donate first, wife or brother
« Reply #2 on: January 03, 2016, 06:09:39 PM »
Dear "Crowseye",
     Hi. It looks like you have done your homework well. It certainly is a hard decision. I donated to a stranger 14 years ago at age 56 and am still doing fine now at age 70, even running half-marathons. My own recovery was unusually quick, and I was back to office work in one week, just needing naps and an early bed-time. But as you note, SOME donors do suffer complications or have a longer out-of-work recovery time, so it is a risk to be considered. I'll just add a few thoughts here:
--- Statistics in Europe (where they have done some long-term follow-up of living kidney donors, unlike the U.S.) indicate that those who donated to blood relatives have a slightly higher rate of later developing problems with their remaining kidney, as compared to those who donated to non-blood relatives (spouses, etc.) They suspect that there MIGHT be unknown genetic stuff which might pre-dispose to kidney disease, and that would be shared by blood-relatives to some extent.
--- Some kidneys from living donors last 20 years or more, but others fail earlier (or even in a short time despite the good screening). So many kidney transplant recipients may need a second (or third) transplant some years down the road. So if you donate now, at your age, his wife will still be available to donate, if needed, 10 or 20 years from now.
--- In the U.S., and I suspect also in Canada, it is illegal to receive payment for a donated organ. But it IS legal to receive reimbursement for all financial losses due to organ donation (lost wages, travel costs, out-of-pocket medical stuff, etc.) and to have fund-raisers for that purpose. Although it does involve some loss of privacy, your brother does have the option of organizing some fund-raising to cover your lost wages. Many people admire living donation and are happy to help out a living donor financially once they know the situation.
   
      Well, that's all I can think of for now. Best wishes and prayers for you all as you work through this complicated situation.
                        Fr. Pat

Offline sherri

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Re: Conflicted - who should donate first, wife or brother
« Reply #3 on: January 03, 2016, 06:41:35 PM »
Dear "Crowseye",

As a family donor I can very much understand your conflicted position. On one hand you would like to help your brother on the other hand it appears to you that he feel somehow "entitled" to your kidney by virtue of the fact that you are siblings. I would suggest that before making any decisions, you may want to seek some professional advice with a mental health specialist, preferably someone who is familiar with living donation. this may offer you a safe place to vent feelings and also help you and your spouse come to a decision. Perhaps, depending on the type or relationship you have with you sibling, you can go to a session together to see if you reach a plan that would work best for everyone.

If you do decide that this type of surgery would be too risky for you then the transplant team or you can just let your brother know that some additional testing has revealed that you would not be a suitable donor. That would be true, because each donor has to be both medically and psychologically fit to donate. You would also know that your brother has an equally good match so you would not be leaving him without an option.

Depending upon the reason for his kidney failure may also make an unrelated match less risky if it is something that you may encounter in the future. You could seek a second opinion from a nephrologist not related to the transplant center to see if you would still be a good candidate. There is still a long list of testing that would need to be completed in order for a donor to become eligible.

You mentioned that the donor nurse said this is a family matter. You should have a living donor advocate who represents the donor's needs at each center (at least in the US). You can find out who that person is and see if they would be helpful in sorting things out.

I wish you and your family the best of luck. This is not an easy decision, although you may read many stories from donors who say it is a "no brainer". It wasn't for me and I know it isn't for many. So i wish you and your family the best with whatever you decide.

Please keep us posted. I would be happy to discuss off line with you as well.

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline Crowseye

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Re: Conflicted - who should donate first, wife or brother
« Reply #4 on: January 03, 2016, 07:20:27 PM »
Thanks for your quick replies. I really appreciate it.
-I realize I'm broaching a subject that no one can really answer for me. Maybe I'm just venting my frustration. This process can bring family closer but it can also bring up some tension as well. I guess I just feel that a spouse should step up when they are one among a number of equally compatible donors. Especially, a husband and wife shouldn't expect others to step up as donors simply to off-load the financial burden onto someone else. As you say, there are fundraising options available to them. My brother had to be prodded by me to even get his wife tested. He said at first that she wasn't compatible because they weren't same blood type. I had to tell him that you could be a different blood type and still be considered compatible. So yeah, there are ongoing trust issues here.
-The 8 week figure for time off work came from both the donor nurse, my brother's doctor and the literature provided by the kidney clinic. The nurse and doctor said to expect 6-8 weeks before I could do physically demanding work.
-I've read as much as I can to inform myself of the potential risks. Its hard to get a firm handle on the figures. Its unfortunate that many of the peer-reviewed articles available online charge high fees ($30-40!) to view. Of those I read, the results are mostly reassuring, though a few that tracked pain and complications post-op had some ominous results (one study had as many as 50% reporting long-term pain that impacted daily activities months after surgery). The other online resource for kidney donors, kidneydonor101.com, seems far less optimistic about the risks of kidney donation. The author of that site points out that no one really knows the long-term impact of kidney donation. That no tracking of donors was done until after 1994 and most clinics still do not do long-term follow up of donors. And the most extensive long-term studies since 1994 have been only through single clinics, which may say more about the quality of care and screening at that clinic than overall safety of kidney donation. My brother's doctor told me that the clinic here does follow-up for up to two years, but he could not provide me with statistics on how many donors at this particular clinic suffered post-op complications, pain, fatigue etc. He just quoted the same statistics I already read online, which leads me to wonder what exactly they do with follow-up information.
« Last Edit: January 03, 2016, 07:22:17 PM by Crowseye »

Offline Fr Pat

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Re: Conflicted - who should donate first, wife or brother
« Reply #5 on: January 03, 2016, 10:34:32 PM »
With regard to the family tensions you might be interested in reading the book "The Reluctant Donor" by Suzanne F. Ruff. She describes her difficult process in deciding whether or not to donate a kidney to her a sister, in the context of a family with hereditary kidney disease.
But the book does not go into detail about health risks from the surgery or financial concerns, but just about the personal relations involved.
   Fr. Pat

Offline Fr Pat

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Re: Conflicted - who should donate first, wife or brother
« Reply #6 on: January 04, 2016, 02:18:11 AM »
Another resource that might be of interest to your sister-in-law is the story of Eldonna Edwards, a professional massage therapist who donated a kidney to a stranger (after being unable to donate to her chosen recipient) and then returned to her work. She wrote a book about her experience called "Lost in Transplantation" , available in printer or e-book form at Amazon.com A documentary film about her donation journey, titled "Perfect Strangers", is also available (www.perfectstrangersmovie.com). Sometimes it can be helpful to SEE a donor to help understand the emotions involved.
   Fr. Pat

Offline elephant

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Re: Conflicted - who should donate first, wife or brother
« Reply #7 on: January 04, 2016, 09:04:17 AM »
Dear Crowseye ,

You've already received some great advice, so I will not add much.

While I do think that some donor hospitals soft-pedal the physical effort of donating, I also think certain websites inflate the risks.  On the internet the people you will hear from most are the unhappy few.  The majority of donors feel great and do not have anything to say.  I donated at age 47 and returned to very demanding sports, including distance running and powerlifting.  I did miss 3 1/2 weeks of work, and could have used another week. 

You are correct that donation can raise some conflicts.  Sometimes an independent counselor is best equipped to help you see the solutions, since they are not emotionally involved.  If you feel you are being coerced into donation, this alone can disqualify you as a donor.  The transplant team will not inform the recipient of the reason for disqualification, they should provide an appropriate medical reason. 

I donated to my Dad, and it was as sherri said a "no brainer".  My siblings were both obese and pre-diabetic.  One of them, weirdly, later said that I donated because I wanted to be my parents "favorite".   I let it go without a response, because such an immature thought issuing from a 50 year old man left me speechless.  But yes, donation can bring up surprising family stuff! 

Love, elephant

Offline poodles

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Re: Conflicted - who should donate first, wife or brother
« Reply #8 on: January 15, 2016, 04:26:54 PM »
Hi Crowseye, welcome to the world of Living Kidney Donation with all it's joys, frustrations. It's an interesting learning curve.

Good for you for going ahead unasked and testing anonymously to see if you might be a suitable donor for your brother.

Since you are donating in a Canada Hospital there should be a Donor Nurse, a Donor Social Worker and there should also be a Donor Advocate at your Donor Clinic. The Donor Advocate might double up as the Donor Nurse or someone else. There should be someone at the clinic assigned to protect you, the donor and your welfare. There may be a donor buddy program, it would be worth asking.

You can contact the Canadian Kidney Foundation and see if they have a counselor to give advice and possible sources of assistance for your family. I do know the Kidney Foundation will reimburse you for out of pocket expenses directly related to your donation. Your your donor social worker will usually provide the application forms.

Here is the Kidney Foundation Living Donor Page.

http://www.kidney.ca/organ-donation-FAQ

Click on Canada in the top right of the page and you will get a drop-down window with the provinces. Each of the provinces has slightly different services.

Unless things have changed since my donation your donor nephrologist will follow you for two years. His interest will principally be the health of your remaining kidney.

Regarding returning to work it is reasonable to expect the maxim estimated length of time for recovery and a prudent financial advice would be to have funding in place for that period of time. Some people do fundraisers if your family would be comfortable with this.

Good Luck in all your endeavors!


 

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