Thinking about Donating: Have some questions

[DJABlayney]

What information do you wish you were told before you donated your kidney?
What information do you wish you were told about kidney donation before even starting the donation process?
Is there information that you did find out, but wish you had been told about sooner?
I would rather just hear what people have to say who have already gone through the process instead of listening to the medical people. Just wondering what your thoughts are on this. Also do you have any regrets?

[Fr Pat]

     I donated a bit more than 10 years ago and have no regrets. I would do it again tomorrow, with joy. However at that time (at the hospital where I donated) they were not good at spelling out the small but genuine health risks involved, so I wish I had been better informed. I think I still would have donated, but I would have liked to know more about the risks. I THINK that most hospitals have much improved on this, and now sites such as this one can help as well. I was also not aware that some donors have difficulties getting (or keeping) reasonably priced health insurance after donation.
     So, please do supplement what the hospital tells you with what you can find here.
        best wishes,
            Fr. Pat

[audrey12]

Be your own advocate.  If you don't understand or don't like what you're hearing, insist on attention and information. Have a patient advocate with you in the hospital at all times visitors are allowed.  Be prepared for the transplant to fail or your recipient to die.  Be prepared for your parents to hate what you're doing and be totally against it.  Don't think you  can go back to work or school in a couple of weeks.  Expect to have a lot of people think you're a hero and not want to stop gushing over you.  Be prepared for your recipient and their family to back away from you after awhile.

Be prepared to feel like you've found your life's purpose.  It's a unique feeling and it's amazing.

[Donna Luebke]

Get copies of every test.  Get the names and phone numbers of staff that do your education, consent, and evaluation.  Agree about bringing your own patient advocate.  Take notes, ask questions.  I know of donors who were told this person could not be in the room with you, the prospective donor. This is not true. You decide, not the transplant team.  Be sure to communicate with your own health care providers since if you donate, they will have to take care of you afterwards.  Let them also review all of your test results.  I am an old school nurse--family is not a visitor.  I never stuck to visting hours with my families.  I was never treated like a visitor either when my sister was hospitalized.  Maybe because her medical history was so complicated and intimidating to most and she needed me.   

You will need your family and friends to support you.  Be sure you let them walk this path with you. 

Agree about being your own advocate. Do not go in with blinders on.  Research the transplant program and the surgeons.  Take time to read about the surgery, its risks, what your care should look like, and be sure to ask who is your contact person should you need something after discharge. 

[messiejessie07]

  I donated my kidney to my dad in April of 2011. Absolutely no regrets!!!! Be prepared to do a lot of the coordinating yourself. f you truly want to do this, there is no one else that's going to make this happen but YOU. It will be an amazing, sometimes painful, & emotional journey. But, giving the gift of life is something few people are capable of. I would love to offer any advice that I can. Feel free to contact me @ messiejessie07@Gmail.com
Best of luck

[jstx]

I agree with Audrey. I felt this was my purpose in life at that particular time. I felt well informed and have no regrets! Okay maybe one small one-I wish I'd kept a journal. Even if only through short entries with the date, where I was in the process, and how I was feeling. As time goes by memories fade & I want to remember every single detail...unfortunately some of it is foggy now. But it was a wonderful experience and I'd do it all over again! Be your own advocate, ask questions, take notes, take a recorder into your appts so you can replay it later to remember everything they told you, and have a "caregiver"-both to be a second set of eyes & ears in the appts & to take care of you after surgery.

[kathben]

I am in the process of completing the liver donor data sheet.  I am allergic to contrast dye, can I still be considered for donation?

[Fr Pat]

     If I understand it right, there are different kinds of dyes that they can use, and different dosages. Be SURE to tell them about your allergy ahead of time. Perhaps they will be able to find some way around it? I really don't know.
    best wishes,
       Fr. Pat

[sandypandy]

Here in the uk - not sure about anywhere else - I wish they had told me that the tests before can be so long and daunting, initally they told me i could donate in as little as 3 months but every time i had a scan or test something showed up so i had to wait weeks for a further explorative scan or test and it just went on and on and i ended up waiting a year, it just never seemed to end all that waiting around for results and further test, but when it did it was worth it of course
but i think they should of explained this to me because i just never knew where i was or when was it happening and as my bro was getting worse even on dialysis i was scred for him, but yeah i understand my health had to be right too.

guess im saying be prepared for set backs, its not all plain sailing, but yeah if i had another kidney i would gladly do it again !!