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Author Topic: Trust  (Read 3453 times)

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Offline Operagirl

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Trust
« on: January 25, 2017, 08:53:47 PM »
Hello all,
U
I am in the final stages of donating my kidney to my mother. It has been a very frustrating non-tranparent process that has made me feel like a piece of meat.
 
During my time with the team this week I was made to feel like my questions and concert ns did not matter. Example, my mom has IgA neuropathy which is genetic. I asked if they had treated me for markers. The nephrologist literally told me not to worry about it with the flip of her hand. I asked for journal articles on postoperative health of donors. She told me I needed bother with such things I needed to focus on preparing for surgery.

I was taken aback at the statement as I had not been informed of my approval yet. She explained that I would not be donating to my mother but rather be involved in a chain. They had it scheduled for middle of Feb. I got more vocal and said I was roles from the beginning because of my career I could schedule at my convince as it was seen as an elective procedure. I also stated that I was doing this for my mother. I was told I was a match for my mother.  She literally gave another flick of her hand and told me not to worry about things.

My advocate came in next but I was left feeling like a product.

Because of family dynamics we do not talk about things that are not positive so I have no one to talk to about this. I am a 40 yr old single professional woman who is very career driven. I work with  big egos daily and have never been made to feel like an object.

I want to do this but the trust is gone.

Offline Fr Pat

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Re: Trust
« Reply #1 on: January 26, 2017, 06:17:08 AM »
I seems very bad that your question about post-donation health of donors was brushed off. Each potential donor should be well aware of the possible risks in order to made a well-informed decision. You might want to also post your message at the FaceBook page of Living Donors on Line, because now many more donors read and post there who do not check in here, and you will get more helpful responses. And if you go to www.livingdonors101 you can find a number of studies about the health of living donors and the texts of the articles that have been done.
      best wishes,
         Fr. Pat (kidney donor, 2002)

Offline sherri

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Re: Trust
« Reply #2 on: January 26, 2017, 07:19:41 PM »
sounds like some red flags. Would your mother be willing to go to another transplant center? both of our medical records could be transferred. It might make sense to at least go for a second opinion. you can also at least go see an independent nephrologist so you can get more information about Iga nephropathy, if there is a genetic component or is it just familial and if there is the ability to test for it.

Centers who do not treat their donors well should be called out on it.

Sherri

Sherri
Living Kidney Donor 11/12/07

Offline jgivens

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Re: Trust
« Reply #3 on: January 31, 2017, 05:30:40 PM »
As a donor, I would have SERIOUS concerns about this situation.  It sounds like you were not intending to be part of a chain or were even given much opportunity to digest that you were going to be part of a chain.  I was very lucky to have a donation team that made me feel like I was there their total concern.  I appreciated that at Mayo, the donation team is completely separate from the transplant team.  I felt confident that my health was their top concern.  They made it very clear all along the process that if I needed to back out or if they thought I was in any danger, I would be removed from consideration.  They spent a great deal of time answering my questions and providing materials pertaining to "life after donation".  I think you are right to be concerned.  You have to feel COMPLETELY comfortable with your choice in order for this to work.  If you have concerns address those before you move forward.  This is a lifetime commitment you are making.  All of the support made me sure that I was doing the right thing. And now, 3 years post donation,  I KNOW it was the right thing for me.

Offline poodles

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Re: Trust
« Reply #4 on: February 03, 2017, 10:20:57 PM »
Hi operagirl, welcome to the donor experience.

As a kidney donor of 8 years I would be very concerned about your pre-donation treatment at your clinic.

Is there a Donor Social Worker or Advocate who can present your perspective to the donor team?

You need an advocate and witness to keep track of everything and make sure that your interests are kept in mind.

Will try to write more on a computer later.

 

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