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Author Topic: Conflicted About Donation  (Read 445 times)

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Offline kidney123

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Conflicted About Donation
« on: February 23, 2019, 02:20:30 AM »
Hi all,

I am a male in my late 20s who has been undergoing testing for kidney donation for the past few months and was recently approved by the transplant center. The testing went very well; however, there was concern about my ten year history of hypertension (dad had it in his early 20s as well). I feel conflicted due to the long-term health risks of donating in my situation. On the other hand, I am not sure if there are any other options.

From information I found perusing posts on the site, I chose to see an independent nephrologist as well, who recommended that due to my young age and hypertension, I should not be donating (he recommended that donors with hypertension only donate if > 50 years old since the long-term risk of living with one kidney is greater in younger donors). In addition, the procedure would cause my blood pressure to increase further (the transplant center noted this as well). It is well controlled on a small dose of an ace inhibitor currently; however, I am worried that it would rise after donation, which could put me at a greater risk of kidney disease in the future, especially considering my family history (mom has end stage renal disease in her 60s) and reduced kidney function post donation.

Even needing to control my blood pressure with multiple medications could be problematic as I am fairly active and enjoy running long distances (up to 50 miles so far, but working on getting to 100 for the Leadville ultra), so taking certain classes of blood pressure medication could make this impossible (diuretics affect electrolyte levels and beta blockers slow heart rate).

When I spoke with my mom (I mentioned everything except for the approval part), she seemed understanding but also wanted to spoke with the nephrologist who was against it and gain access to my medical records. Ever since she asked me to donate, she has been a bit pushy about the whole thing, including trying to expedite the process (I was doing contract work at the time and obviously had to wait until I had a full time job with good health insurance and PTO to begin testing) and inquiring with my transplant team about my status (which is against HIPAA regulations). I know that she is just scared about her own health, and I am doing everything in my power to help her, but I don't want to end up resentful if I have significant long term health issues from this. Her pushiness just makes me have more reservations about the process.

Other family members seemed upset, acting as if it would be a burden just to take a few days off from work for testing. I'm the only member of my family that has volunteered to be tested, taken time off for testing and to take care of my mother (I haven't used any vacation days on myself), and spent thousands of dollars on medical tests (had the independent nephrologist appt and a renal artery scan before my deductible kicked in). I realize that these are small sacrifices (especially compared to donating a kidney), but I do feel a bit unappreciated. Everyone seems to think they have the right to come up with any excuse not to consider donation, but when I have a legitimate medical reason to be concerned (which I can do nothing about), they get upset and defensive.

Do you guys think it would be beneficial to get a third opinion from another nephrologist? This seems like the best way to make an objective decision on the matter. If I try to go with emotions only, I'll feel obligated to help my mother (and guilty if I don't) but also resentful towards her pushiness and the rest of my family's lack of empathy towards my situation. I think that getting as unbiased of a medical opinion as possible might be the only way to make a decision that I can live with.

If my mom's partner is a good candidate, then I think that might be the best option. If the third nephrologist says it's safe for me to donate and my mom's partner is not eligible to donate, then I think I should donate. If my mom's partner is not a good candidate, and the third nephrologist says that I should not donate, then we're in a bad situation, but I'll at least know it's too risky of a procedure for me to go through with.

What do you guys think? I feel cowardly for having these conflicted feelings, especially when the transplant center approved me as a candidate (they have been fantastic throughout this whole process by the way: honest, resourceful, compassionate, and patient). However, as the independent nephrologist noted, there is not a whole lot of data about younger hypertensive donors (donors > 50 with well controlled hypertension do as well as other donors in follow up).

Thanks for all of your help guys.

Offline Fr Pat

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Re: Conflicted About Donation
« Reply #1 on: February 23, 2019, 03:37:34 AM »
     Just wanted to comment a little about you thinking that there may not be "any other options". There are other options. Many patients wait and then receive a kidney from a deceased donor, although in some areas the wait time is longer than in others. And there may be many of her friends, neighbors, church/synagogue members, former alumni, former co-workers, etc. of her own or similar age who might be willing to donate if they knew of the need. So I would just suggest that you avoid trapping your elf into thinking that you may be the "only" option.
     best wishes,
            Fr. Pat (donor, '02)
P.S. You might want to also post this on the Facebook page of "living donors on Line" as these days more people check in there rather than here.

Offline sherri

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Re: Conflicted About Donation
« Reply #2 on: February 24, 2019, 05:48:01 PM »
kidney123,

So sorry that you are feeling pressure to donate to your mom. You mention that "Everyone seems to think they have the right to come up with any excuse not to consider donation, but when I have a legitimate medical reason to be concerned (which I can do nothing about), they get upset and defensive". Everyone, including you, has the right to not consider donating or testing.

Sounds like you may be feeling that others are judging you since they may feel that since you are the child, you have a "duty" to donate. i will play devil's advocate, what kind of mother would consider endangering her son who has high blood pressure at a young age and family history of hypertension? forget about other's judgment.

IMO, sounds like you could use a good therapist to help you sort out your feelings, a safe place to vent and ways to communicate with your mom. I would take that over a third opinion from another nephrologist. the transplant center itself agreed with the second opinion. Approving you only means that at the time they are evaluating you, you meet criteria. they warned you of the potential complications so that if something happens in the future, they can say, well there was informed consent and the donor knew the risks and has full autonomy to make the decision. the problem with that it may work for the unrelated donor who has some "choice" to back out. but the related donor often does not feel that same "choice". if it makes you feel any better, I know plenty of children donors who did not donate to their parent, particularly because of genetics and sometimes emotional or psychosocial reasons. And they are good people! there are also plenty of mothers who have said, I would never take a kidney from my child. does that make your mother a "bad" mother? no. does it make you a bad son if you decline? No.

for you to undergo the testing, tells me you are sensitive, thoughtful and good son. The other concern I have is that you said you paid for testing. May I ask why the testing was not covered under the recipient insurance? the donor should never be paying for any testing related to the donation other than standard of care tests (mammogram, pap smear,colonoscopy for those over 50). please make sure you do not give your insurance information for testing.

There should also be an independent donor advocate whose job it is to protect the donor's interest. If you have not met them yet, ask to speak with them. they are there to represent you. In the end, if you decline the team can let the recipient know that there was a medical reason that you could not donate.

where are you being evaluated? you can post here and find other donors from that hospital and ask about their experience.

the other thing is that a transplant is not a cure for end stage renal disease. it is another treatment. a patient can do hemodialysis at home, peritoneal dialysis. they can also multiple list, meaning they register in two different regions to increase their chance of a deceased donation.

you have options. please don't feel cornered.

wishing you peace making this difficult decision. feel free to check back and keep us updated.

all the best,

sherri


Sherri
Living Kidney Donor 11/12/07

Offline kidney123

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Re: Conflicted About Donation
« Reply #3 on: February 24, 2019, 08:35:29 PM »
Hi Sherri,

The cost of testing was related to the independent nephrologist that I saw, which included a renal artery scan. Everything at the testing center (all required testing for consideration as a donor including the CT scan) was covered by the recipient's insurance. The center was in fact incredibly helpful with billing.

Thank you very much for your reply. I appreciate your support and perspective.

Offline sherri

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Re: Conflicted About Donation
« Reply #4 on: February 25, 2019, 07:25:53 PM »
I also saw an independent nephrologist but used the results of my testing at the transplant center. I was very lucky, my insurance covered that visit and all my yearly visits to my nephrologist over the past 11 years. It gets coded as solitary kidney and so far i have never been denied coverage.

Best of luck.

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline kidney123

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Re: Conflicted About Donation
« Reply #5 on: February 26, 2019, 04:44:28 PM »
Yes I also used the results from the transplant center :)

The nephrologist wanted an ultrasound of the renal arteries, so it was just that and a check up but hadn't hit the 2k deductible yet unfortunately. Hit it after those appointments though so all set for the rest of the year :)

 

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