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Living Donation Forum / Re: Share your experiences about LKD evaluation process
« Last post by kelnot on September 17, 2020, 02:59:44 PM »
The goal of my study is to improve the living kidney donation process by ensuring that the thoughts and experiences of living donors help mold those changes. Thank you for your consideration.
Living Donation Forum / Share your experiences about LKD evaluation process
« Last post by kelnot on September 16, 2020, 12:19:24 PM »
As a living kidney donor and PhD-student researcher, I am looking for up to 30 volunteers to be interviewed about their experiences during the living kidney donor evaluation process. If you are currently being evaluated, waiting for a surgery date, or disqualified because of the evaluation process, I would like to chat with you. 

If interested, please click the https://tinyurl.com/LKDInterview or feel free to private message me with any questions. Ohio University IRB# 20-E-236.

Living Donation Forum / Re: being physically active after donation
« Last post by AdrianFR on September 14, 2020, 06:42:13 PM »
Before I donated a kidney almost 5 years ago I was working out with weights and running 5 times per week.

I took me a good 6-9 months before I could work out at pre-surgery intensity.
Prior to this I was able to work out at much lower intensity.

I hope this helps.
Living Donation Forum / Re: Donor Privacy, Helluva Lot to Learn
« Last post by PrivacyFreak on September 14, 2020, 10:58:52 AM »
IMHO, the checklist omits a HUGE part of the process: the entire part in which you are under anesthesia, i.e., the surgery.  If the bold line item below was part of the checklist, my life would be so much better right now.

Section 2, point 3...

Provide to living donors:
3. Instruction about all phases of the living donation process, which includes:
* Consent
* Medical and psychosocial evaluations
* Pre- and post-operative care
!!  How your body is handled, and by whom, before, during, & after surgery.
* Required post-operative follow-up according to Policy 18.5: Living Donor Data Submission Requirements.

I'm still not mentally right about what information is held back from living donors specifically, and also surgery patients in general. It's obvious the healthcare system doesn't want patients to know. If the assumption is that patients don't care, shame on them. Ask first. Assume later.

I appreciate this forum and the chance to express my sadness.
Living Donation Forum / Re: Mourning the Loss of Your Kidney Recipient
« Last post by Fr Pat on September 14, 2020, 02:13:40 AM »
     I myself did not have such an experience, but it must be very difficult. And people who have not "been there" will find it hard to understand your feelings. In the card racks in the stores you cannot a find a card for "sympathy for the loss of your organ transplant recipient". It is a very new thing in all of human history. You might perhaps want to post this also at the FaceBook page of Living Donors on Line, and also the page of "Living Kidney Donors Support Group". Many more donors post there rather than here these days, and you are more likely there to hear from other donors who have suffered the loss of their recipients.
Living Donation Forum / Mourning the Loss of Your Kidney Recipient
« Last post by Monica__ on September 13, 2020, 06:48:02 PM »
Hi all,

I donated my kidney to a very good friend of mine in 2009. At the time, i was 23 and she was 26. She had Lupus Nephiritis and I had seen her endure several hospital stays because of her disease for several years before the donation.

Her body had been starting to reject the kidney in 2013 because she accidentally got pregnant. Not only did she lose her baby then but her immune system shifted and rejection started earlier than anticipated. She and I hadn't stayed well in touch after that as I felt a little disappointed that she wasn't more careful about her health. She unexpectedly died earlier this year in April at the age of 37. she wasn't already admitted to the hospital for anything-- she was at home with her husband and all of sudden couldn't breathe and passed away in the ambulance.

I'm still struggling with this loss. Most people that I've talked to about kidney donation typically donates to an older family member, say a parent, or someone else who is perhaps 50+ years old. But has anyone else here donated to a friend, who was young, and who died young? 

And just wondering if anyone else has any insight into working through this mourning process. It's been 5 months now, but it still weighs heavily on me. I suppose I'm just looking for others who had a similar experience just to not feel so alone with all of it.
Living Donation Forum / Re: Donor Privacy, Helluva Lot to Learn
« Last post by Michael on September 12, 2020, 01:53:00 PM »
Something is seriously amiss. The hospital is responsible for obtaining "informed consent" from you before the surgery can be performed. That's a legal concept, and it involves your signing a statement that you have received enough information to understand the surgery, and based on your understanding that you consent to the surgery.

Here is a UNOS check list that is intended to guide a transplant center in what should be included in "informed consent" education: https://optn.transplant.hrsa.gov/media/2162/living_donor_consent_checklist.pdf

Did you get any materials to read and/or a web site to visit with information on the living donor surgery? Some transplant centers have you attend an educational session -- like a class. In any event, you should have been provided with a formal education on testing, preparation, surgery, and recovery. If not, then technically you could not have been sufficiently informed to consent to the surgery.
Living Donation Forum / Re: Donor Privacy, Helluva Lot to Learn
« Last post by PrivacyFreak on September 11, 2020, 10:05:18 AM »
I really appreciate your reply and will look into the Facebook group for my questions. Many are more about transparency of surgeries in general, though kidney donors are in a unique position to deserve it in detail.

To your point, if I had been told the real information from the patient's perspective (even better if it was an unbiased mediator), I think my concerns could have been managed earlier and easier. I think my mission now, after donating, is letting potential donors know they

  • have a right to ask and be told about the details of what happens to their body
  • have a right to request more respect and privacy throughout the process

As a donor with an assigned support team, I don't recall anyone saying they were "obligated to inform" - I got a lot of "I'm obligated to do no harm" as they were assessing my value as a donor candidate. Once I was approved, the information I received was limited to reminders for appointments and not to eat after midnight.

Donor reality is that the kidney team practices managed transparency until you have a surgery date. To their credit, they clearly thought they were doing the right thing by asking at the end of each meeting, "Do you have any questions of me?" They just don't know that's the wrong question altogether when the recipient doesn't even know what to ask. Here's the reply I wish I had given:

Tell me what I don't know. Tell me everything, every detail, that you're going to do to my body from pre-op to hospital exit.
Living Donation Forum / Re: Donor Privacy, Helluva Lot to Learn
« Last post by Michael on September 11, 2020, 08:23:55 AM »
If you have a Facebook account, you could post your questions in the LDO group there. It's a "closed" group so only people in the group see messages. We don't get much traffic here anymore so you probably won't get much of a response to your questions... but we'll see.

As an alternative, I can post a message in the Facebook group and point them to the message thread here, asking for people to comment.

Based on what you're asking, I'm wondering whether the transplant team did much to inform you about the testing, preparation, surgery, and recovery. There's been a lot of work in the transplant community to improve donor education in the spirit of improving "informed consent." LDO was started 20 years ago because the information and process was so poor; many donors (including me) had very limited information. The situation at the hospitals is much better now, and there are also many more online resources with good information.

So, to your questions about the surgery, it shouldn't be an option as to whether a potential donor would want to know the details about the surgery. They shouldn't have the choice. The transplant team is obligated to educate the donor. (OPTN provides guidelines on what should be shared, but there is no enforcement.)

As for the privacy breach, that's really surprising to me. Every health care professional knows the limits on sharing personal health information in the U.S. because of HIPAA. I don't think what you experienced is "typical," and someone should have called it out in the moment.

As for the ombudsman, not every hospital has one. You might check to see. If so, that's someone who is essentially an independent problem solver for situations just like yours.
Living Donation Forum / Re: Donor Privacy, Helluva Lot to Learn
« Last post by PrivacyFreak on September 08, 2020, 10:40:05 AM »
There's another part of my rant that specifically I'd like to know what others think:

"...I had a contract made [with the surgeon prior to surgery] requesting simple courtesies one would naturally assume to be standard. I know now those courtesies are never respected otherwise, and so few [having surgeries] even know."

Q. If you had surgery, did you want to know the details? If so, did you ask? What were you told?
Q. If you have not had surgery, do you want to know the details? If so, how will you go about finding the answers?
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