About Me

My photo
Chicago, Illinois, United States
Make Life Happen! Welcome to all of you who visit. If you are looking into becoming a Living Donor and would like a detailed idea of my journey..scroll down and begin with the older posts first. I welcome any questions or topics that you would like to know more about.

Tuesday, June 1, 2010

The Importance of Early Education on Kidney Transplant Options

According to the OPTN, the Organ Procurement and Transplant Network, as of today there are now officially over 85,000 people on the waiting list for a Kidney.
I received an email this week that was basically a "scolding" that I was a "newbee" to the Living Donor community and if I was going to educate the public, I should give more detailed research. I would like all of you to understand that I am not a medical professional and this blog is dedicated to MY journey as an Altruistic Living Donor.

I have stated in all of my blogs that it is important for anyone considering this procedure to do their research and homework and visit numerous resource sites.
My mission is to encourage Living Kidney Donors by sharing my personal experience.

Out of 107,529 who are on the National waiting list for a transplant, 80% consist of those awaiting a kidney transplant. The average waiting time for a kidney from a deceased donor is an average of five years. Five years is a long time and many will become ineligible to receive a kideny even if it becomes available. This keeps the kideny transplant in the number one postion of need. While the waiting list for a kidney has doubled over the last 10 years, the donors list has not kept up with the need. With the number of people waiting for a kidney continuing to grow, our challenge is...where do we get a kidney?

Please understand that I am the first to be a MAJOR supporter of urging people to become an Organ Donor. I think it is imperative to support all organizations who promote and educate on becoming an organ donor. I myself have been a registered organ donor since the 1970’s. But we do face the dilemma that even if all of the organs could be harvested, a majority of them will not be acceptable for numerous reasons. These reasons are the same for those who are interested in becoming a living kidney donor or even a donor of blood. I do believe that organ donation is crucial because of the numerous organs and tissue that can help others including those waiting for a kidney.

With this being said, it is positively crucial for EARLY education to those who may potentially need a kidney transplant. It certainly is not an easy topic to bring up to family and friends, but one that is very necessary.
You absolutely must discuss this need, tell your story. The more people that know, the stronger possibility someone may step up and offer to donate. If they are not a match they may still be willing to be part of a kidney pairing in order to find an appropriate match. For more information on Living Kidney Donors and Kidney Pairings, please go to the Living Kidney Donor Network website;

The second challenge we have is that too many people suffering from kidney failure are not receiving information in the early stages from their physician about the idea of living kidney donor ship. It would only seem natural to me that physicians should be receiving information on this process on a regular basis. It would be ideal to see the topic be included in Continued Medical Education programs for physicians. Too many patients are being placed on dialysis and the national waiting list which means 5 years or more before a kidney is found. Some patients don’t have 5 years to wait.

Receiving a kidney from a Living Donor is the BEST POSSIBLE form of kidney donation according to medical research. It is my hopes at some point to gain funding to make a 45 minute DVD on the living Donor Process. It may take a while but it’s a purpose that I am dedicated to.

We absolutely must find a better way to communicate and educate the need of kidney patients. The reality is that the only way we can reduce the wait for a kidney is to increase the number of Living Donors.

Many people who do not live in a major city may face a difficult time in finding hospitals that have transplant programs. If that the case then I would suggest you that contact major hospitals in a larger city near you. I can not begin to tell you how many people have written to me from my blog saying they only wish they had this kind of information earlier.

These points all lead to how important it is to have a non-profit organization like the Living Kidney Donor Network.
I hope you will take the time to comb this website and listen to the webinars that are available to you by Harvey Mysel, President and Founder. The National Kidney Registry is another invaluable site; http://www.kidneyregistry.org/index.php?cookie=1

Spread the word and Make Life Happen!!

WTTW, Channel 11 Interview: May 19, 2010


Anonymous said...

I could not agree with you more! Having gone down this road with my brother, who died last June 22 needing a kidney, I am still extremely frustrated that he was not provided sufficient information at the beginning of his journey. I have since learned of so much more information and procedures that we could have researched, had we known.

I pray that LKDN will be the spring board for a vehicle to provide current, accurate information to anyone and everyone who is facing kidney failure, for whatever reason. Physicians and hospitals need this information in order to share it with their patients. Currently, it is just pure luck if you are affiliated with a hospital/physician who is agressive regarding the latest means of identifying transplant donors, especially the method of paired donation and "unending chains" due to the gift from an alturistic donor, like you.

Is there grant money out there for the development of an "educational" DVD, such as you have proposed?

In any case, keep posting and maintain that energy and enthusiasm for such a great cause.

Jan G said...


Thanks so much for your informative blog. We have much in common as I too am scheduled to become an alturistic donor on 29 June. I am passionate about this cause and wanted you to have one more resource to pass around. I registered with the National Kidney Registry
and they hooked me up with a medical center for my donation. You have inspired me to start my own blog as know the more we talk about it the more people will be drawn towards donation themselves.

Jan G

Cara said...


Thank you so much for your post.
The National Kidney Registry is an EXCELLENT place to start, especially for those who may not be in a major city to help find the closest transplant program for those who wish to donate. Thank you for adding them to the list of excellent resources.

Jan, I wish you the VERY best on your journey to donate on June
29th and I do hope you will keep in contact with me to let me know how you are doing. I would love to feature your story when you are feeling well enough after your recovery to write. Thank you so much...for Making Life Happen!

Anonymous said...

Please email me if you wish to let me know about your experience. I donated a kidney to my father only one day prior to your donation! I would love to cate with you about your experience.

Lea Hanan