Survey – The Living Donor Experience

 

DO NOT FILL OUT THIS SURVEY UNLESS YOU HAVE DONATED MORE THAN ONE YEAR AGO. 

 

At LD101, we believe in the power of personal narration as a means to heal, educate and affect change. To that end, we use the information provided in this survey to improve our understanding of the living donor experience, identify areas in need of attention, set goals, and provide needed services. All information is kept confidential unless otherwise indicated*.

In addition, we aim to send representatives to ACOT and other public policy organization meetings, utilizing the public comment segment to detail the trends in the information gathered from these surveys or read an entire living donor’s story aloud. Not only does this force officials to confront the reality and consequences of the policies they’ve developed, it adds the living donor narrative to the meeting’s permanent and public record.

If you do not wish your story to be used in this way, please check the box at the bottom of the form.  We  respect your privacy.

 

– Only one person views the surveys with all information as submitted. Identifiers will be removed upon request prior to any public reading as described above. Identifiers will be removed if/when any additional individuals view the narrative and/or data –  no exceptions.

– There is no financial compensation for completing the survey.

– Someone from LD101 may initiate contact via email to follow-up or offer assistance and/or resources.

– In the future, this collection of narratives may be analyzed for publication in some form or other. If so, all identifying information will be removed, and attempts will be made to contact (via email) individuals who have contributed their stories.

 

Some Tips:

–Wait until at least one year after your donation before completing the survey. This provides a bit of self-reflection and distance from the experience. (If you have questions, are in distress, or would like to talk to someone, please send email at cristy{at}livingdonor101.com)

-Answer the questions as if you were talking to a friend. The more details, the more helpful your contribution.

– There is no reason to say “I’d do it all over again” or “I don’t regret donating” or any such other variation. Telling your story and expressing what you need, want and deserve is no reflection on your feelings toward your recipient, nor is it a betrayal. Every living donor has the right to ethical and sound medical treatment, and the right to speak out.

Any additional questions, suggestions or concerns can be sent to donorstory@livingdonor101.com

 

 

If you want your narrative read at ACOT or other meetings, your name must be provided. A first name and last initial will suffice.
If you have donated both, please fill out the survey twice, one for each donation. Feel free to compare the two experiences when giving your answers.
Anything particularly memorable?
Please include name if possible. Remember: A Coordinator is not the same as an Advocate.
Remember: A Living Donor Advocate is not a living donor 'buddy'
This is NOT a yes/no question. Be specific about the info given.
Again, this is NOT a yes/no question. What info was given on henias, nerve damage, pancreatitis, infection, etc.
Check all that apply
According to two studies from A2ALL, the largest adult-to-adult live liver transplantation study in the U.S., 40% of live liver donors have and will experience complications.
eg. dietary or lifestyle changes, medications to avoid, etc. NOT a yes/no question.
Who gave the informed consent? Were you given written materials, videos, etc? What info did it include?
Were you given a special suite? Was your room near your recipient? Were you roomed with another living donor? How was your care?
Also: did you return to your transplant center for treatment, or visit another facility?
*Past the normal recovery period.
EG. supplements, sought advice online (where), doctor visit, etc.
A living donor buddy is NOT professional aftercare or support services
What tests were done:? What questions asked? Who paid for the follow-up?
Note: LD101 LDPT do not and will not participate in promoting or increasing living donation. The goal is to ensure the protection and care of living donors, as well as those considering living donation.

Thank you for your bravery and candor!

 

Permanent link to this article: http://livingdonorsarepeopletoo.com/survey-the-living-donor-experience/

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  1. AllysonH61@gmail.com Hostetler

    February 17, 2013 at 3:05 pm (UTC -4) Link to this comment

    Just wanted to leave a message about my post-kidney donation. Have had a very rough 3-yrs. suffered from such fatigue. Even a little bit of stress did me in. After reading from this site, I decided to get proactive and that this was not all in my head. Recommended from a specialist to start L-Tyrosine. (Due to adrenal insufficiency issues). Also my pcp recommended a great nephrologist that did testing and found my right kidney was doing a great job. What a relief. He is sending me on to endocrinologist to check on adrenal insufficiency, but I must say I feel 75% better since taking the supplement. A very minor easy fix. I have even been able to do a spin class. Miracle of miracles.

  2. Jackie Gorman

    November 2, 2013 at 5:26 pm (UTC -4) Link to this comment

    I have been given no information about supplements and the adrenal gland, Allyson! Thanks for this. What tests did you have to determine that you needed supplements?

  3. Jackie Gorman

    November 2, 2013 at 5:28 pm (UTC -4) Link to this comment

    Hi Allyson, just another question, since I still have fatigue issues..how much L-Tyrosine did your doctor recommend taking?
    Thanks again,
    Jackie

  4. Allyson Fuller

    November 4, 2013 at 1:02 am (UTC -4) Link to this comment

    I will try this again. I take L-Tyrosine 500mg. Brand is called ‘NOW’. Dr recommended. I did have full testing on cortisol levels and thyroid. I also take Levothyroxine as well. I am a new active woman! Blessings, Allyson

  5. Jackie Gorman

    November 4, 2013 at 1:42 pm (UTC -4) Link to this comment

    Thanks so much! I will give it a try…..

  6. Pam Baumli

    May 6, 2014 at 9:15 pm (UTC -4) Link to this comment

    No one mentioned adrenal gland issues to me 15 years ago, when I donated. Maybe this explains why I am so tired, respond to stress easily, and am freezing when everyone else is sweating. I am going to make an appointment with endocrinologist tomorrow.

  7. LDPeopleToo

    May 7, 2014 at 11:11 am (UTC -4) Link to this comment

    Here’s an NIH page on adrenal dysfunction or Addison’s disease: http://endocrine.niddk.nih.gov/pubs/addison/addison.aspx.

    Some living kidney donors have experienced similar symptoms and found them to be related to their reduced renal function, so have those checked as well.

    Take care.

  8. Allyson Fuller

    May 7, 2014 at 11:40 am (UTC -4) Link to this comment

    Here I am and it is May 2014. Still on 500mg of L-tyrosine. Ran out for a week once and became short of breath just using the stairs. Weird. I walk, do hot yoga when I can. My chief concern is my GFR. I was never even aware of it . But last check it was 53. Way too low and I have no idea why. Frustrates me that no one told me this. I do not use Ibuprofen or take meds are processed through the kidney (even though the post donation Dr told me I could). I eat healthy, never smoked, only drink socially and not much at that, and am 5’7 150lbs.

  9. Pam Baumli

    May 7, 2014 at 1:08 pm (UTC -4) Link to this comment

    Allyson, I wonder if we are the same age also, I don’t smoke, never did, am 5’7″, and weigh around 150.
    I try to walk around 3-4 miles a day, but if I do anything that excerpts me, I run out of breath. Such as going up hills, stairs, etc. When I walk, it has to be on a level area, always wanted to be able to run a 5k, but when I try running I run out of air very quickly. No clogged arteries, so I know it’s not that. I wish we could correspond with each other directly, just found this site recently. I was looking on line trying to figure out what is wrong with me, and see if it had anything to do with my donation.

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