Recipient Pressure

[outclassed]

Hello!
I am a long-time lurker but first time poster. This site and forum has been a great resource, thanks to all.

Guys, I need help or advice. My brother has PKD and recently underwent a bilateral nephrectomy, he is now on dialysis.
I was asked to donate and I do not regret saying yes. I did all the testing and aside from being a little overweight, I am a great match, blood type 0- and the recipient is A+. I was also adopted. Our family has had continual issues with PKD, it downright sucks.

But I am just not ready to donate tomorrow. I have a family too, I am unemployed and do not have health insurance, we are working on getting life insurance but it is taking longer than we expected to get it underwritten. I hesitate to set a surgery date, not because I do not want to donate and not because I am afraid of surgery or anything, there are just a few final things I would like to take care of first for my little family.

All of this is unacceptable to the recipient. He wants his kidney and wants it now. The pressure is overwhelming. What I want no longer matters.
They (including my parents) make me feel like a horrible person. I know he can't last and I understand he is suffering, I get it, I really do.

Is it not enough to be willing to donate?  Am I bad person for making him wait? Is being willing to donate and being ready to donate two separate things?
I am not sure how to reconcile these feelings. Have any of you had similar experiences?

I appreciate any words, criticisms and all.

Hoping to make it through this.

OC

[sherri]

Just getting used to the new message board so apologize for any mistakes.

I am so sorry that your family is facing such a difficult medical crisis. Kidney disease is tough to deal with but genetic diseases such as PKD must be even harder to deal with. There is a wonderful book written by Suzanne Ruff, The Reluctant Donor. She writes about her journey of becoming a donor to her sister with PKD and how this disease has effected all of them.

Family donation comes with a multitude of layers. There is a sense of obligation, guilt, love for your sibling and whole array of other feelings. I found (and still find) it helpful to speak with a social worker or psychologist who can help you sort out your feelings, have a safe place to vent, and perhaps even give you some concrete skills on how to deal with the family pressure.

I think that recipients and donors get very different information from the transplant team. The surgery is often played down by the recipient's physicians and it is described as minimally invasive, go back to work after two weeks, live a normal life with one kidney. The donors need then to work out all the details, assess the risks, figure out if donation is really appropriate for them at a given time. Your concerns are valid. Not having insurance, caring for your immediate family, being unemployed, certainly sounds like reasonable conditions for you not to qualify at this time. Frankly, a hospital that would approve an unemployed uninsured young person would be acting (IMHO), negligently. Please speak with the social worker at the transplant center to help sort these issues out. One needs to be healthy physically, mentally, emotionally and financially in order to undergo elective surgery. Just as a hospital would not accept a potential donor with health problems, so to they should not accept a donor with potential financial or emotional problems. This doesn't mean you can't donate in the future but you may have to work some things out first. The center always gives the potential donor what they call a medical out. You can say that you are not ready at this time and they will let the recipient know that you are not medically able to donate. Some people feel this way they can decline with dignity and not cause a family rift. I hope in the future that communication between the professionals, the donor and the recipient is improved so that there is less pressure and more understanding on everyone's part.

Best of luck in your decision and keep us posted.

Sherri

[WilliamLFreeman]

Dear "OC,"

In addition to Sherri's wise post, an additional point is that most people survive dialysis for a long time.  Life on dialysis usually sucks for most people, but they usually *do* "last".  (And life with a transplanted kidney is no bed of roses either, even if it usually quite a bot better -- and does not always work.)  As Sherri suggested, discuss this with the transplant center's social work, for 3 reasons:  1] It probably will be good to talk with a knowledgeable person outside the family;  2] He/she may be able to facilitate your getting life insurance & health insurance (or at least know well how to get them); and  3] She/her may be able and want to do such things as discuss with you how to communicate best, and/or facilitate a discussion with you and your parental & his families.  Yes, please keep us informed, & if we can help.

Looks to me like "OC" does not stand for "outclassed" but "Oh--way Classy."   

Bill

[Fr Pat]

Dear "OC",
      Since you are unable to donate at this time due to serious financial/insurance/family problems I think that you should be comfortable and guilt-free in explaining this. The whole family should also keep in mind that you are probably not the only posible living donor. Has your brother made known his condition (his need for a transplant and the possibility of living donation) to relatives, friends, co-workers, neighbors, church/synagogue members, club members, old alumni, etc. (including people in their 50's and 60's)?  There may be other people who are willing and able to donate NOW but are not even aware of the need and the possibility. In my strong opinion NOBODY should ever be ASKED to donate. The need for a donation should be made known to many, in hopes of free responses.
     Also keep in mind that while many kidney transplants from living donors last for 20 years, most will fail eventually. And many fail before 20 years, or even shortly after the transplant. So there are recipients who will eventually need a second (or third) transplant. if you cannot donate now, you can still be a "back-up" if the need for a second transplant arises in the future and you are then able to respond.
     And if you are not able to donate now, and no other living donor offers, your brother can still be on the waiting list for a kidney from a deceased donor. Sadly, often that wait is long. But sometimes a well-matched donation from a deceased donor becomes available more quickly.
     Take your time, and don't be rushed into a quick decision.
          best wishes,
             Fr. Pat

[outclassed]

I appreciate all of your responses.
I tried.

My brother decided he did not want to wait until March 22nd (the day I had tentatively schedule for the surgery) and his wife has now stepped forward, rushed the process, matched and the date is set for March 8th. That will make transplant six weeks from his nephrectomy.

I am of course relieved and I think it will be better for everybody involved. I am hoping that this roller-coaster ride of emotions and frustrations subsides.
I tried.

And since PKD sucks, I may have a chance in the future to help my family.

[ohtobeahayes]

Bless your beautiful, giving self!
I hope the rollercoaster slows down for you soon.  It's a wild one. Take care of you, and let us know how your brother and his wife's surgeries go. Love coming to all of you!

[Aries7]

"OC",

I think it is wonderful you were willing to donate to your brother. I also think it is wonderful you are willing to be a donor down the road to another family member should that need arise. Best of luck to your brother and his wife with their upcoming surgeries. Please keep us posted how it goes for them and how you are doing as well.

Linda

[livingdonor101]

 "Frankly, a hospital that would approve an unemployed uninsured young person would be acting (IMHO), negligently."

I concur 100%, Sherri.

"and his wife has now stepped forward, rushed the process, matched and the date is set for March 8th. That will make transplant six weeks from his nephrectomy."

IMO, this is strike two against this particular transplant center. One of the ethical foundations of living donation is that the living donor is 'free from coercion'. While I can't speak on your brother and his wife's relationship, the fact he was pressuring you so heavily is a good indication he did the same thing to his wife. The transplant center, by 'rushing' the process, did not give his wife the generally agreed down time to make her decision. Frankly, I think you did the best thing for you (and your famly) in not allowing this facility anywhere near you.

[outclassed]

Just wanted to provide an update.
My brother had a successful transplant the afternoon of March 8th. His wife was found to be an even better match than myself and so it happened. Everything seems to be going well!

I have to agree that the transplant center didn't seem to handle everything in the best way, I am sure I may not have either. To be honest, my team was hesitant about me. They are the number one center in our state however. I think part of the problem was conflicting information from the surgeon who agreed to take the case. He seemed to tell the recipient one thing (whatever he wanted to hear) and me as the donor, another. But it is done and I am so very grateful that I did not have to donate at this time.

I do not believe that my brother pressured his wife, when she agreed she seemed very confident and at peace with her decision. For whatever reason they just did not believe in dialysis, they made up their minds that it would not keep him alive or they were so scared it wouldn't. They didn't want to listen to experts or wait any longer so now it is done.

I am thankful for the miracles of modern medicine and I am glad we can all move on with our lives.
For any potential donors out there - keep your wits about you but bless you for your selflessness.

Thanks again for the support...
 

[livingdonor101]

Now I'm really confused - you said: "I think part of the problem was conflicting information from the surgeon who agreed to take the case. He seemed to tell the recipient one thing (whatever he wanted to hear) and me as the donor, another"

According to CMS Final Rule 2007, the surgical teams for the donor and recipient are to be kept separate. I really hope what you're saying is that this was your brother's surgeon who talked to you about your brother's case, as opposed to this surgeon doing both the procedures. Because the latter is a big violation of the Final Rule.

It doesn't matter if they're the 'number one' center in your state. I was at a 'world-renowned' facility and knowing what I know now, their list of errors, omissions, violations and mistakes are too numerous to count. It's unfortunate, but in our own best interest, none of us can afford to gift anyone with that level of trust.

Meanwhile, I'm glad you did what was best for you under incredibly trying circumstances. Take care.