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Living Donation Forum / Re: Altruistic/Non-Directed Donors
« Last post by Fr Pat on Yesterday at 02:07:46 AM »
I donated a kidney non-directed back in 2002. My story is in the "experiences" section of this site. There are other non-directed donors here, and many more who only check in at the FaceBook page of "Living Donors on Line" or the page of "Living Kidney Donor Support Group."
     Fr. Pat
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Living Donation Forum / Altruistic/Non-Directed Donors
« Last post by AshleyH2887 on March 17, 2019, 04:34:47 PM »
Hi Everyone,

I love this site and being apart of it, it is so great connecting with other donors and hearing their stories along with any problems any of us have encountered.

I donated in 2014, non-directed in Ohio. I am curious if anyone else on Living Donors is a non-directed donor? I am trying to connect with other non-directed donors but I am having a trouble finding many.
Would love to hear from some :)

Ashley
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Living Donation Forum / Re: testicular swelling
« Last post by Fr Pat on March 13, 2019, 11:25:43 PM »
     I did not have testicle pain after kidney donation surgery (nor was I warned about the possibility) but I now know that it is recognized in the medical literature as a known and documented risk. So every male potential donor should be warned about the possibility ahead of time. May I suggest that you also post at the FaceBook page of Living Donors on Line, as these days many more people check in there, and this problem has sometimes been discussed there.
       Fr. Pat
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I donated a kidney in Oct of 2018 2 weeks after surgery I had a right side testicle with varicocele and hydrococele.  I was told in all pre op consultations that only the vein, artery, and ureter would be compromised,  never once did anyone exam a testicle, or speak of testicular involvement or mention cutting my gonadal vein.  I am now 6 months post op still experiencing painful testicle, painful sex, and swelling,  my right testicle is 3 times bigger than the right, and being told to wear a jock strap I guess for the rest of my life and on my last Doctor visit was that I would most likely have to have it removed to stop the pain and swelling or learn to live with it.  I am mad as hell and seeking lawsuit at this time.  I was never informed of this and I had I of been I would have never agreed to transplant.  Its an outrage. 
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Living Donation Forum / testicular swelling
« Last post by jamorris67 on March 13, 2019, 10:36:34 PM »
I am mad as hell.  I donated a right side kidney in Oct of 2018.  2 weeks after surgery my testicle was 3 times bigger on the rt than on the left.  I learned that my right gonadal vein was cut on purpose and knowingly by the doctor.  I found that many others like me were never informed that this would happen.  Never at any point did anyone bring up the gonadal vein or any involvement with other organs.  I was told that the vein and artery and ureter would only be cut and the kidney removed.  I was then told to get off my high horse when i confronted my surgeon about it.  Was told that he performs the surgery this way.  Well, I made a decision to donate made on partial truths.  I have now read many cases where men just like me were not told and up to 10 years post op with painful swollen testicle and painful sex.  As I type this 6 months post op, I am in pain and with a hydrococele, and variococele of the testicle.  I was told that I would be fully recovered after 6 weeks yet i am 6 months post op and have now been told the only way to eliminate this pain and swelling it to have the testicle removed.  I am seeking lawsuit at this time but have been told by two lawyers that it would be hard to fight my case and most lawyers would most likely not take the case.  I am outraged and mad as hell,  I wish someone would take the SOB surgeon out and castrate him like he has me, then tell him to come off his high horse. 
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Living Donation Forum / Re: Conflicted About Donation
« Last post by kidney123 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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Living Donation Forum / Re: Conflicted About Donation
« Last post by sherri 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
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Living Donation Forum / Re: Conflicted About Donation
« Last post by kidney123 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.
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Living Donation Forum / Re: Conflicted About Donation
« Last post by sherri 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


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Living Donation Forum / Re: Conflicted About Donation
« Last post by Fr Pat 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.
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