confused & conflicted

[mpmcginn]

My husband, Anthony is scheduled to donated his kidney to his uncle on July 19th.  When we first found out he was in renal failure my husband was eager to get tested.  His uncle will be 73 in July and donated to his sister 42 years ago.  She died several days after the transplant.  We've always had a lot of admiration for his decision to donate & it was important to us that he didn't suffer because of that decision. 

Several weeks ago during his medical evaluation in New York, Anthony's coordinator asked why his uncle needed a transplant.  When he explained that his uncle was a prior donor, he was told that because of his donor status, she would be surprised if he had to wait three months for a kidney from a deceased donor.  We understood that his time on the wait list would be shortened but always thought he'd be looking at years, not months.  We were surprised and relieved because although we were committed to helping him, if there was another alternative with the same outcome we'd rather not have to do the surgery. We have three small children & my husband is currently the sole bread winner for our family.  His ability to work and to maintain his life & health insurance policies is extremely important.  Since we live more than 1700 miles from the transplant center, we'll have to be away from our kids for almost two weeks--which is a little traumatic for everyone.  Naturally, we also have concerns about Anthony's recovery and long term health.  After he got home we emailed the coordinator just to make sure we understood & she reiterated that if a deceased donor kidney came available, it would be offered to his uncle & he would be able to decide whether to take it or to stick with living donation.  A few days later, however, she emailed to say that she had learned from our uncle's coordinator that in his initial evaluation he had refused the option of having a deceased donor.

We were stunned and honestly, a little hurt.  Having gone through what he has, it's hard to understand why he would want to put someone else in the same position if he had another option.  Our relationship with the uncle is somewhat formal & there's also a language barrier that prevents us from addressing the issue with him over the phone.  Instead we talked to my husband's parents about it.  They seemed surprised that we were upset and seemed to have the opposite response to ours--as in, why would he want a kidney from a deceased donor, if he could have a living donor.  I know there's been some argument about how long a deceased donor kidney lasts versus a living donor but he's 73 years old and has had some cardiac issues.  Are we wrong to find it strange that he's insisting on having a living donor when he has another option available?  We always had our reservations but were happy to move forward when we thought Anthony was his only chance, it's much harder to reconcile the risk now that we know he refused the option of a deceased donor kidney. 

We're also frustrated by how difficult it seems to be to get help and information from the team.  We're so far away that much of our contact has been over phone and email.  We've tried to ask a lot of questions but we only ever get very specific (i.e. several word answers) and are always left unsure.  For example, since we'll be away from our kids we didn't want to spend the standard two weeks in town.  The coordinator told us we could leave as early as 5 days after surgery.  She didn't mention anything about follow-up.  I'm assuming we're meant to follow up at home but with who--a nephrologist?  the local kidney transplant center?  who will pay for that?  any recommendations on a local doctor?  Nope, she just said, "you can leave as early as 5 days post surgery".  Doesn't exactly leave us feeling like my husband's health is a big concern.  Any tips on dealing with the team or similar experiences you can share?

[sherri]

The psychosocial and emotional issues surrounding kidney disease and living donation never cease to amaze me. What is even more amazing is the lack of support from and assumptions made by the professionals. Clearly, the protocols related to a living donor and the extra points they are granted on the wait list should have been discussed with you while making the decision to test or not. Your relative obviously did not want to disclose this since he clearly wants a living organ. A living donor advocate should be assigned to you to protect your interests and have your health and concerns foremost. You can ask for the living donor advocate, separate from a coordinator. BTW, where are you being evaluated?

The education out there to potential recipients is that deceased donations are sub par and living donations are much better because they last longer, statistically. This certainly wasn't the case when your uncle donated as his recipient died a few days after the transplant. There are some recipients for whom living donations do not work as intended, bottom line, no guarantees for anyone. When my brother asked me to donate my kidney to him, I asked him if he had been placed on the waiting list and he responded to me that he didn't want a deceased donation, he only wanted a living donation. I felt similar to what you expressed. How can he not even wait to see if he is called so not to risk the life or future health complications of a family member. Like you, I have a spouse (self employed where we get our health insurance), young children etc. The only way I have been able to rationalize it and come to terms with it, is that living donation is so drummed into the recipient's head by the doctors that it becomes a paramount quest... you must find a living donor or else you're doomed. And family members are viewed as the organ supply to fix their patients. His doctor at Mt. Sinai (in NYC) told him to call his family and ask them for a kidney because he was in kidney failure. My brother did not share with anyone that he was being treated by a nephrologist for 2 years prior to his kidney failure. His nephrologist was just as shocked by his acute kidney failure as we were and I think felt the need to fix it fast so advised him to get a donor and fast.  I don't know if the hospital your uncle is being treated at is the facility where he donated, but they may feel like they need to encourage him to get a living donor and quickly fix what went wrong. He was a healthy donor who according to them should have been able to live perfectly fine with one kidney. He just donated his "spare".

You have very legitimate concerns for your husband and your family. Given the age of your uncle, the circumstances surrounding his donation, his ability to earn 4 extra points on the wait list and be eligible to receive a deceased organ, are very good reasons to have you and your husband question your decision. Your informed consent may have been lacking. Your husband was under the impression that he was needed to be a living donor because your uncle would have to wait "years" according to you, for a deceased organ, when in fact he may have even been offered a donation but declined.

 In addition, you aren't getting good vibes about the care you will be receiving at your uncle's hospital. If your husband was having a non elective surgery and you were not pleased with the care, would you seek another opinion or just go through with it? If there is a setback or complication, can you trust them to take care of you and your family? Clearly, they have no qualms about letting you go home 5 days after the surgery and following up with your own doctor. If a complication arises you will be far away and have to navigate care on your own.

I suggest you seek some help outside the hospital to determine if this is something you and your husband want to continue in. A good social worker or psychologist can help you sort out your feelings and make suggestions on how to deal with the family dynamics, sense of entitlement and expectations. Perhaps you may want to seek a second opinion to see if this is something your husband should go through. At any point during the evaluation you can let the coordinator know that you need more time or decide that this may not be right for you and they can tell the recipient that something came up in the testing to disqualify you. This may make it easier since there is so much family pressure for you to donate.

I am so sorry that you and your family are going through this crisis. Glad to see you found this forum. Keep us posted.

Sherri

[Fr Pat]

     If your husband and you come to the informed decision that it would be best for your uncle to accept a kidney from a deceased donor, you might do well to directly and clearly inform his transplant coordinator that a living donation is now NOT available from you. You need not give the transplant coordinator your reasons., but she/he should know clearly of your intention. You may then if you wish inform your uncle (perhap in writing rather than speaking) of the reasons why you think it best that he accept the offer of a deceased donor's kidney.
    Keep in mind:
---while living kidney donation is rather safe, SOME donors do suffer serious medical, financial or emotional complications, and there have been a few deaths due to donor surgery. It is not a decision to be taken lightly, especially when another good alternative is available.
---for a person of your uncle's age, a kidney from a deceased donor of similar age may be chosen. They may not wish to transplant a kidney from an elderly deceased donor into a young recipient, and such a gift might go to waste if no elderly recipinet accepts it.

     You certainly have a difficult decision to make, but don't be afraid to MAKE a decison. A living person may donate a kidney only once, so it can be wise to try to be sure that the best use be made of it for a recipient without another good alternative.
  best wishes,
     Fr. Pat

[willow123]

My understanding of the procedures is that if at anytime your husband does not wish to become a donor, he need only tell his advocate.  The recipient and the recipient's family will only be told that the prospective donor was unsuitable.  This procedure is intended to avoid interfamilial pressure and hard feelings when a prospective donor has a change of heart.

So while you and your husband may decide to deal with your uncle openly about the issue, it is also possible for your husband to withdraw from the process in a confidential manner.

I wish the best to you and your husband.

[mpmcginn]

I am so very glad to have found this forum and thank you all for your thoughtful replies.  We are working with New York Presbyterian Weill/Cornell where my husband's uncle originally donated his kidney.  I'm not sure if it's a function of us being so far away or not pushy enough, but though the team is very nice we just never feel like we have all the information we need. 

Sherri, I cannot thank you enough for sharing that you had a similar reaction when asked by your brother to donate.  It's so hard not to feel selfish or guilty when we talk about our reservations.  I don't think we're at the point where we're saying no but I absolutely think you're right, we need the help of outside professionals to make an informed decision.  We've requested my husband's records so we can meet with his local doctor to discuss specifics.  We were told he was cleared but were given no specifics and I'm curious about his current kidney function. And seeing a social worker or psychologist is a great idea.  Even without the pressure of an upcoming surgery, the family dynamics are pretty complicated (aren't they for us all) and we need to tease out why we're feeling so pressured and so guilty.  I will definitely keep you posted about our decision.  Thanks again.

[sherri]

I'm glad that the forum was helpful in helping you and your husband sort things out. Family donation is sometimes complex and needs more emotional support that is often offered to family living donors. I have always been an active participant in my own health care as well as my children's and make sure I get copies of any tests, lab results and clinical notes. It helps me keep track of where I am and see trends. As my kids have grown I pass along their immunization history, prescriptions etc to teach them how to advocate for themselves as young adults. The hospital should have been in contact with your husband's PCP to get records of his previous history. And I think professionally they should involve the PCP as they are the doctor who is familiar with the patient and will most likely be caring for them post nephrectomy.

As many of us have mentioned, this is elective surgery so you have some time to get your questions answered, evaluate risks and benefits before committing to the surgery. You can get the input of the PCP, a nephrologist outside the hospital and a social worker. You might also want to explore all the issues related to health insurance and life insurance as well.

Keep us posted. Wishing you all the best,

Sherri

[MissFrizz]

You are so wise to consult your local doctor.  You will be able to receive objective medical information this way.  Continue on your path to find real answers to your questions.  Willow is correct, if your husband decides not to donate, the transplant center should deem him unsuitable with no further explanation.  From my experience, it is also imperitive that you do not overlook his age and cardiac health.  Best of luck. 

[SWB]

I just wanted to comment regarding the need to consult with YOUR primary doctor during the decision and throughout the donation process if you decide to proceed.  I owe a lot of thanks to the folks within this forum.  I did NOT initially consult with my own MD as I thought about the process except to have the initial blood work drawn there for the first screening and then simply mailed it to get tested.  It wasn't until after I did all of the tests at the transplant center for the tissue match and went through the various interviews that it actually occurred to me that although I had good intentions I was being stupid.  I simply got caught up in the process and determined to do what I needed to and lost focus on the need to involve my own doctor(s) who were truly independent and objective.

Luckily it worked out for me and he gave the thumbs up for everything.  However, I will be having the transplant surgeon do their post-procedure checkup AND my local MD as well.  The same for clearing me to return back to work.  I realized that I owe that to my family and myself.

I would encourage you to get good independent feedback from your own healthcare professionals.

Best of luck on your situation.

-Scott

[MissFrizz]

Scott, that is exactly what I did and I wished I had visited my primary care physician before getting caught up in the transplant evaluation.   

[lawphi]

Is the uncle a candidate for home dialysis? 

[mpmcginn]

Thank you all for your wonderful insights.  We set up a consultation to review the results of his transplant eval with my husband's doctor last Friday.  Unfortunately, early Thursday morning my father suffered a massive stroke.  We are grateful he's alive but it's clear we have a long road ahead and that he will need a lot of support as he recuperates.  My husband and I decided that we have to postpone the transplant indefinitely.  I can't imagine leaving town for two weeks and being able to properly support my husband when things are still so uncertain with my dad.  He has already spoken to the team and they were very supportive but we are really anxious about talking to his uncle.  I know he was counting on us and I feel terrible and guilty about disappointing him.  He's completely resistant to the idea of dialysis and as I mentioned in my initial post he refused the option of having a deceased donor.  It's hard not to feel incredibly torn.

[Donna Luebke]

Since the uncle has an allocation priority as a live donor, he should have a very short wait.  I am told this is about 3 months on average so will be interesting if this is so.  I am curious if this information was ever shared with the uncle OR if the team did not because he had a 'willing' live donor.  The team had a duty to tell your husband from the start that this was an alternative for the uncle.  Not after all the tests are done or even waiting to the point of the medical evaluation.  Please thank your coordinator for giving your husband this information.  My guess is that the surgeon will not be happy she did.  There is a financial benefit to the program--billing for two surgeries.   

[PhilHoover]

Don't let anyone pressure your husband into being a DONOR.....including your husband himself.  This should be a "no regrets"  and "all in" decision.


If your husband has any reservations at all, then "NO, I"m sorry, I can't be a donor" is the BEST and ONLY answer.

[lawphi]

As a transplant wife, the recipient is 73.  The differences between home hemo and a transplant are minimal at this point.