family members automatically disqualified from donating to recipient with PKD?

[Yellobelle]

My SIL has PKD and was recently added to the transplant list. I always assumed that her full siblings would be the closest matches, and didn't give it much thought. However, she is saying that all of them are automatically disqualified because they might also carry the PKD gene, leaving only two half siblings (out of 8 ) healthy enough to donate, one of them being my husband. Doing extensive reading, it seems that genetic testing could be done to see if the other brothers do actually carry the gene for PKD. Are these tests unreliable? Do these rules vary by transplant center? Is she maybe just assuming they are disqualified, and should we try to talk directly to somebody from the transplant center to get more info about this whole process?

There are tons of crazy dynamics going on, but even just being coldly logical, wouldn't it make sense to have an older sibling donate if at all possible and hang on to my hubby's relatively young, healthy, type O kidney for the next one? Especially given that another half-sister and a nephew already have been diagnosed with PKD, the same sister could need another kidney down the road, and there are another dozen nieces and nephews potentially at risk?

[sherri]

From what I understand there is genetic testing, probably not cheap not sure what is covered. Some patients are reluctant to do genetic testing due to other ramifications like health insurance, life insurance, job security etc. So it is not that simple. There have certainly been siblings who have donated and been ruled out having PKD but then the issue also remains did they pass the gene onto their children and what to do about that. Some siblings are very ambivalent about donating because of the fear they may indeed get the disease or their child may be diagnosed and need their kidney if they are healthy.

There is a great book called The Reluctant Donor by Suzanne Ruff. She donated to her sister with PKD and talks very openly about her family's struggle with this disease. You can get it on Amazon. She also gives her contact and she might be someone who could be a good support for you and your family.

Wish you and your family the best as you begin the transplant journey. Keep us posted.

Sherri

[Yellobelle]

Thank you for the book recommendation! After doing tons of research on the risks of donating, I have been trying to do some research on the realities of the "other side," but I feel like I keep finding more questions than answers. My husband's side of the family has a history of heart problems, so I don't feel that anyone could donate without some long-term risk. And we are definitely the most vulnerable out of everyone to life/health insurance issues, as he is self-employed in a physically demanding profession, so we have to be privately insured and there are no such things as vacation/sick days for us.

If it comes down to my husband, and no one else is able/willing, then I will 100% support whatever he decides and be his advocate (I am the research nerd). I think I am just feeling a little angry for this to be basically dumped on him, and then it turns out others with far fewer life complications and much closer relationships *might* also be candidates, but are taking this out. if they have a 50% chance of PKD, shouldn't they already know about the genetic testing, even if they opted not to get it in the past? Sorry if I sound judgmental or something, just scared for my husband and wish it could just be me instead!! I actually will feel better if the genetic testing is totally unreliable and they really absolutely are unqualified to donate. Again, under no illusions that he will keep both kidneys for his whole life with such a large at-risk family, just feel like more time would improve the risk/benefit ratio for him and our family. On the other hand, I would rather him do a kidney now than get asked for a liver down the road from another sister on that list! Yep, messy messy situations!

[sherri]

Yellobelle,

you wrote  just scared for my husband and wish it could just be me instead!! I am sure you are aware that living kidney donors do not have to be genetically related to their recipient for a successful transplant. There are many non related donors who do well and due to the advancements in the anti rejection medications the recipient does well. Spouses donate, friends, non biological relatives etc. If you are considering donating you could test to be a candidate. But do so only if you really want to. There is an underlying assumption that family always is willing to donate and as a family donor myself that is not always true. Sometimes, family members can be advocates for the recipient to get their need out there so that others may decide if they would like to donate.

I also found that the further along in the process you go, the harder it is to back down. So think carefully before even testing to see blood type. You should feel comfortable with the idea of being a living donor before going down the road. It is psychologically much harder to back out when you find out you are a match. Of  course there is dialysis which gives time to plan for transplant. The best advice I can give is educate yourself, make sure your are comfortable with the information. Seek an opinion from a nephrologist not associated with the hospital to get a non biased opinion and get some psycho social support from a psychologist or social worker experienced with family dynamics and transplant.

All the best,

Sherri

[Yellobelle]

I am newly pregnant, so it would be a long, long wait for me to be eligible. I nurse for at least 12 months, and already know that surgery and nursing do not mix for me (had gall bladder removed while nursing). That is the only reason I exclude myself at this time. I am more comfortable with me undergoing surgery because I have a high pain tolerance and I know I react fine to anesthesia, morphine, etc. plus no lost income. I feel like the short-term risk is much lower for me, plus isn't it always scarier to have a spouse in the hospital? Getting pregnancy labs done this week, so I will find out what blood type I am at the least.

Been doing piles of reading while stuck in bed with horrible morning sickness--first the official info, then 40 pages of forum posts on here and the entire living donors are people too site. :-) absolutely invaluable info! The family seems to be under the impression that it is "minor surgery," you can get money to cover lost income, no long-term effects, etc. unfortunately, with my experience with medical professionals, I do not believe them when they say things like, " you don't need that random organ." On the other hand, if it was MY sister, none of this would ultimately matter, so I will not make the decision for my husband or guilt him either way. I honestly have no clue which direction he will go on this, because he is entirely brave and heroic, yet his immediate family always comes first. The financial hit is his biggest concern, I know that seems kinda crazy when it is someone's quality of life or maybe actual life on the line, but soon-to-be 3 kids to feed and no one is going to necessarily help US if we burn up our entire savings.

Besides reviewing our life and health insurance policies, I think some loooong, direct conversations are in order. His family is not the most communicative lol, which is why the whole thing caught us somewhat by surprise, when there could have been years to plan for this. I understand SIL doesn't want to complain and doesn't want to straight out ask, but you can't just ignore this. She mentioned off hand that the peritoneal dialysis is not working very well. In the same conversation that she mentioned that only the two siblings could potentially donate, which was the first I had heard. As far as I know, she has no idea that dh is type o. She also mentioned that another brother was talking about setting up a FB page to try and find a donor, which makes me think the situation is getting bad. Clearly we are not close if we had no clue that things were to this point! I think that is why I am kinda in shock and feeling pressure.

Good advice about making a decision before getting too far in the process or even before informing anyone  if he is a match. Dh is extremely healthy, so to me the only hurdles for approval are the family history of heart issues, cross matching, and if a social worker would disqualify us due to financial concerns (the self employed, lost income thing). Possibly we need to look into some kind of disability insurance? Although privately, those usually only cover a small percentage and have significant waiting periods for any decent coverage.

Anyway, thanks for providing a safe place to vent and learn and come to terms with all this in my head!

[kdub]

Yellobelle,

Wow, what a very tough situation!   

Your question about saving your husband's younger kidney for later made me chuckle, as I remember hearing and saying things like that many times while we were deciding who in our family would donate to my brother (we all matched).

Maybe this is obvious, but I think the best thing you and your husband can do is stay open, and communicate with the family.  If you want to ask that every sibling have genetic testing... its not an unreasonable suggestion. 

As you stated, there are so many unknowns around kidney donation.  I wish I could give you some great guidance, and tell you where you can find all the answers.  All I really found out was:

Short to medium term donors seem to do pretty well.
For Longer term outcomes, there is only anecdotal information
Some studies suggest that outcomes are worse for people under 40.
Harder to get health and life insurance with potentially high creatinine levels.
Overall, only one or two kidney donors die in the U.S. each year.

For me... If I wouldn't have given my brother one of my kidney's, he would have had a very s***ty life.  I am very close to my brother and love him very much.  So, even with the unknowns, I wanted to donate.  It has turned out as good as I could have hoped.  I also had: a very stable job, pretty good corporate health insurance, short and long term disability insurance, some (although probably not enough) life insurance. 

It is a very tough decision!

I sincerely wish you and your husband and sister in law all the best!

kdub

[Yellobelle]

I know, right! With 17 people in the family diagnosed or at 25-50% risk for PKD, every kidney counts!! Can't have any healthy organs aging out lol.

[Fr Pat]

     Another factor to keep in mind is that IF there is a family member who COULD donate but does not wish to, the hospital may help by "finding" a good medical reason to not donate, so as to save the family member the embarassment of having to say no. As all this is confidential between each potential donor and the doctors, no one else can have access to the reasons.
     best wishes,
           Fr. Pat

[willow123]

Hi, I started to reply a few weeks ago but was interrupted . . . by now I hope you have discovered that the premise your SIL suggested is false. My husband comes from a family with a history of PKD--several of his sisters  have it as did a parent and other relatatives.  He was not only initially accepted as a match for them but also participates in a paired exchange program.  If there are no cysts on the kidneys by age 30, they can pretty much rule out PKD.  I am not sure of the other tests they did but they know he does not carry it. Also, it is expressed by a dominant gene so if he does not have it himself, that means he does not carry the gene and our children will not have it.

I completely and thoroughly empathize with your predicament.  It is very similar to my own.  I have written a number of posts on this forum about how much it stinks to be the spouse.  Sibling donations are also particularly difficult as unspoken pressure and guilt also plays a role.  There have been studies conducted on donor experiences of their donation process and typically the "sibling" donations are found to be the least personally rewarding. (As opposed to the parent-child, spousal or non-directed donations.)

I have found through these many years that there is virtually no support during the process for the spouse of the donor.

I am hoping for a happy ending for you, your husband and your SIL.  Feel free to email me at any time.