Adventures of a Kidney Donor

May 12, 2012

The Organ Donor Experience

Recently I read a great book for organ donors: The Organ Donor Experience: Good Samaritans and the Meaning of Altruism by Katrina A. Bramstedt and Rena Down. The book focuses on altruistic donation between strangers rather than friend and family donations. It covers all kinds of organ donations and discusses the entire process from evaluation beforehand to life after donation.

It cites scholarly research to back up its information but isn’t dry. What I found most interesting were the testimonials from the organ donors themselves. It’s great to see research and writing on this issue, since there isn’t a lot out there on altruistic donation. Although my kidney went to someone I don’t know and was technically altruistic, I think of my donation as more like the family/friend kind, since my first motivation was to get a kidney for a friend. I am doubly lucky because my friend Jackie is free from dialysis and so is the recipient of my kidney–I hope.

Dr. Katrina A. Bramstedt is a noted medical ethicist associated with California Transplant Donor Network in Oakland, California. Rena Down is an Emmy-award winning writer for theatre and television and is the recipient of a kidney from a stranger.

The kidney walks are coming in June! Please give to one of my friends: Freda’s kids and/or Hedke’s Haulers or participate in a walk in your area.

Go to List of Resources on Kidney Donation

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February 4, 2012

Support for Donors and Recipients

If you are a potential organ donor or recipient or have already received or given an organ, you may need support. It is sometimes good to hear about other people’s experiences and to share yours. When I was preparing for donation I read a lot of blogs that showed details on donor’s experiences.

Donors: Living Donors Online is a good place to read about the experiences of others or to share yours. It has message boards and also links to blogs and donor stories. LDO covers all kinds of organ and tissue donation. Also check out national organizations like the National Kidney Foundation.

Recipients: To see if there are online stories, contact your local affiliate of national organizations like the National Kidney Foundation.

If you like to see people tell their stories, go to YouTube and you will see many videos of donors and recipients.

To meet with other donors and recipients, this list has support groups in several states: Transplant Living.org. To see if there are support groups in your community, contact your local affiliate of national organizations like the National Kidney Foundation. Hospitals and doctors often have support group information as well.

Here in Mid Michigan, we have the Transplant Support Group/Lansing Area. It meets the second Thursday of each month at The Peoples Church, 200 W. Grand River, East Lansing, Michigan in the Centennial Room, lower level off the Social Hall. Upcoming meeting dates are: February 9, March 8, April 12, and May 10. For more information Contact Joan C. Smith at (517) 351-2175 or joansmith@mindspring.com

The Transplant Support Group shares experiences and answer questions. Discussion is treated confidentially by the support group so people can feel free to share fears, concerns, successes and failures as it relates to the transplantation process. The group serves pre- and post-transplant patients, such as – eye, heart, lung, liver, kidney, bone marrow candidates and recipients.

The group would like to invite patients and caregivers to join them. You do not have to have had a transplant to come to the meetings. It is open to people who reside in the Lansing area and beyond. Such support is provided without regard for race, color, gender, national origin or faith.

Go to List of Resources on Kidney Donation

May 16, 2010

Resources on Kidney Donation and Transplants

Thought I should do a blog without me blathering on and on that JUST has resources. So here ’tis.

 INFORMATION ONLY!!!

CONSULT YOUR MEDICAL PROFESSIONALS, DONOR ADVOCATE AND COORDINATOR.

General Resources

Organ Donation After Death

Polycystic Kidney Disease

Kidney Donor and Recipient Stories

Matching Donors and Recipients

Donor Evaluation 

The Kidney Removal Procedure (Nephrectomy)

Preparing for Surgery and Care After Surgery

FOLLOW WHAT YOUR HOSPITAL SAYS (This is just to give you an idea.)

 http://urology.jhu.edu/MIS/lap_nephrectomy.php 

Support and Psychology

If you have trouble from your employer about time off etc. or trouble from an insurance company when trying to buy coverage in the future, have your donor advocate or coordinator from the hospital talk to them.  Check with your state to see if there are laws that help employees with paid leave for donation or that protect your position while you are off. If you are a federal employee and a donor, there are federal laws that cover you. See if your state offers tax deductions for any uncovered donor expenses.

After Donation

GFR Rate

Paired Donation

Altruistic and Non-Directed Donation/Donor Chains 

The Future

Statistics

**For Michigan residents or check with your local library.

 

July 2013

 

 

April 11, 2010

How to Get Information on Kidney Disease and Kidney Donation

 The National Kidney Foundation is a great place for information on kidney disease and kidney transplants. They have a section on paired kidney donation, questions and answers on living donation and much more! Living Donors Online has a lot of information too.
 
The University of Michigan Transplant Center where Jackie and I will be having our surgery has a lot of good information too.  I just went to the site and it says:  “Together your kidneys filter about 50 gallons (189 liters) of blood every 24 hours!”  Wow. I had no idea. They explain their program of paired donation.

I work in a library so I am lucky to have great resources on hand.  Check with your local library to see if you have access to any of the Gale Health and Wellness databases. They include articles from medical journals and medical reference books, pamphlets and much more. If you are a Michigan resident go to mel.org.

I like reading about it because I will know what to expect. The more I know the statistics on the safety of donation the better I feel. I am not taking this lightly–I know it is pretty big surgery–but I feel confident and determined. I hope it can be done  laparoscopically, I think my odds are good for that and not the traditional incision way.  I guess the surgeons don’t always know until they begin.

I found the answer to this question, they usually take your left  kidney. I wonder why? Need to look that up.  

Go to List of Resources on Kidney Donation

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