What is an Altruistic Donor (non-designated) and what is the Process to Become One?

An altruistic donor is someone who would like to donate a kidney but does not have a recipient. This is someone who would like to give the gift of a better life to another human being. This is also known as a Good Samaritan Donor.

The impact of being an altruistic donor (non-designated donor) can be mind boggling as in my case, becoming the domino that set off a kidney pairing where 8 people were able to receive a kidney. I was going to be thrilled if accepted, to help one person. My blood type is O positive which makes me a universal donor. I am able to give to A or B where A cant give to B and vice versa. This is an ideal situation to set up a kidney pairing. When I was asked in the testing phases if I wanted to donate one to one or be involved in a pairing, my answer was I would prefer to be involved in the pairing where more then one person would benefit. But I was willing to do one to one as well depending on the need. Do not be discouraged if your blood type is not O positive. It is still possible to be part of pairing.
If for some reason you can not be part of pairing…keep in mind what the person who receives your kidney is thinking. You can change life for another human being! There is no greater gift than that.

Becoming an altruistic donor more commonly referred to as a "non designated donor" is a decision that only you can make. No one should make you feel pressured or obligated to donate… What I can tell you from my personal experience is if I had ten kidneys, I would give nine.

I was extremely fortunate to have organizations like The Living Kidney Donor Network, founded by Harvey Mysel here in Chicago and The John Brockington Foundation, founded by John and Diane Brockington in San Deigo, California as mentors and a wealth of information. If you are thinking of giving the gift of life, do your research and visit both of these websites to gain a better understanding of the donor process and to gain a stronger understanding of the kidney pairing exchange process.

You should investigate and decide what hospital in your area has a Kidney Transplant Program and ask them to send you the initial application to become a kidney donor. The following are the phases of testing that you will you go through before approval. How quickly these steps transpire all depend on the facility. I have heard the average is 6 months but from the time I started my medical testing to the time I donated was only a period of 9 weeks. Don’t be afraid to be pro-active and call the facility to find out where you are in the process.

Keep in mind every facility has a bit of difference in order but this is what you can expect.

Phase 1
Find out what hospitals in or near your area have Kidney Transplant Program. Be sure to ask them up front if they are willing to consider an altruistic donor. There are actually some hospitals that will NOT, which is yet another topic I’d like to attack. They will send an information kit along with an application for you to complete. You will be asked to sign a medical release form to obtain records from your primary physician(s).

Once the facility has received the application and reviewed it, you will be asked to come in for an initial blood draw to determine your blood type and for rule out any conditions that could prohibit you from donating. You will also be asked to do a 24 hour collection of urine to bring with you for your initial lab tests. I made sure my appointment was on a Monday so I could have Sunday to do the urine collection at home.
You will most likely be contacted by the Independent Donor Advocate (IDA) to explain all four phases of the donor process. Your assigned IDA is your main point of contact for any questions, needs or concerns that you may have.

Phase 2
Will include more general lab testing as well as radiology tests to determine overall health, renal focused evaluation to determine the presence of any underlying kidney disease and screening for transmissible diseases.

Phase 3
You will have a general History and physical by one of the medical facility Doctors. You will also see a social worker and possibly a psychiatrist to review your psychological history. If these exams are okay you will then have a CAT scan (with and without dye) of your kidneys to be sure that both are functioning well and also an EKG.
Between phase 3 and 4 you should receive a call that will determine if you are approved to donate. If you are a suitable donor and still want to donate there is usually a 7 day “cooling off period” that is required by all living kidney donors. This must be your decision for all the right reasons and any medical facility wants to be sure that this is what you truly want to do. Remember, the facility is as concerned about your well being as well as a recipient.

Phase 4
Is geared more around Pre-surgery preparation. One to two weeks before the surgery is scheduled you will most likely have to have updated blood tests. You will meet the surgeon(s) and transplant nurse(s) who will answer any questions that you may have as well as going over your
Pre-op instructions.

Make Life Happen!!

WTTW, Channel 11, May 19, 2010 Interview:
http://lkdn.org/video.html

Meet My Recipient, Dr. Daniel Becker

I have had so many people ask me if I knew who would be getting my kidney and the answer was no. Since I am an altruistic donor my kidney goes to who needs it and that is the most important thing. During my evaluation process to become qualified as kidney donor, one of the many questions I was asked was you would like to meet your recipient?
My answer was yes of course! But only if it was comfortable for the recipient to do so. I have to remind myself that even though this is a tremendous gift to someone you must also respect their privacy for whatever reasons they might have.

Fortunately I have had the honor of meeting my recipient. As I said in my earlier blogs all of us were invited to the press conference following our surgeries. It was an amazing moment, truly a life changing moment. None of us had any idea that this would be the largest kidney pairing Northwestern had ever done. I know that the hospital had to bring an extra staff of 40 people in order to handle this huge kidney exchange and would require a tremendous amount of coordination and endless hours of matching and scheduling for the Transplant Staff to make it all happen. To them, I give my thanks for their dedication.

Dr. Dan Becker, a veterinarian in Naperville, Illinois is the gentleman that ended up receiving my kidney in the pairing process. Dan graduated from University of Illinois in 1984 and has been a veterinarian for 26 years this month! He practices at Boulder Terrace Animal Hospital in Naperville and has a lot of cute, fury fans. I wanted to speak to him first before writing this as I respect his privacy. I was so happy that he is allowing me to share his story. Dan felt it was an important part getting the word out about the importance being a Living Kidney Donor.

Dan and I didn’t have much time to really speak the day of the press conference. All of us were exhausted, on pain medication and were anxious to go home. I asked him to describe to me the events leading up to his needing a kidney transplant. He was diagnosed with diabetes at the very early age of 3 years old. Dan and his parents, Dick and Lynn Becker and his siblings knew that eventually he would most likely need a kidney transplant. August of 2009 Dan’s kidneys were shutting down and his fears were confirmed. He did go on dialysis and he had to coordinate his dialysis treatments so that he could go home afterwards. It was extremely exhausting for him and he had issues with dehydration. The idea of being on dialysis for an extended amount of time was definitely not a happy one. Now knowing what needed to happen, Dan and his family immediately started looking into finding a donor for him. His staff, family and friends were all supportive and many stepped forward to donate. Some were eliminated because they did not qualify, others because they were not a match. It was actually Dan’s receptionist that recommended Northwestern Hospital as an option as her Mother had received a transplant there.

Dan’s sister, Pam was determined and although she was not a direct match for Dan she wanted to be part of this kidney exchange pairing so it would be possible for her Brother to receive a kidney. She flew in from Atlanta at her own expense to participate as did Dan’s parents Dick and Lynn Becker to be there for support to Dan and Pam. In Dan’s mind, struggling with diabetes most of his life, he was amazed that the need for a transplant had not happened sooner. He managed to keep his diabetes under control with close medical monitoring, diet, exercise and insulin but after so many years it became too much.

Needless to say he was extremely grateful to his Sister for stepping up on his behalf in this pairing and I am sure the recipient of her kidney is as well! He received the magic phone call on Good Friday that Northwestern had found a match for him and his surgery was scheduled for April 26, 2010.

His progress has been excellent and no dialysis! His numbers were normal before he even left the hospital. Dan brings a very important topic to the table. It is imperative it to get the word out about the importance of living donor ship and kidney pairings. In our conversations he brought up an interesting point. Some people are more than willing to donate providing the person they want receives their kidney, but not open to it if the person they know is not going to be the recipient. What people need to understand is if they are donating a kidney in a pairing exchange like ours…EVERYBODY WINS! Being a living kidney donor to me, is a Kidney Squad Team who are there to benefit as many people as possible. Since I was an altruistic donor and Dan’s Sister was not compatible to donate directly to him, he received my kidney.

I saw Dan a week after our surgeries at our follow up appointments at Northwestern. I was amazed at how GREAT he looked. Surgery for the recipient is more intricate than the donors. He was sporting 34 staple stitches. Wow…ok…I am definitely not going to complain about my small incisions. I remember saying to Dan at the press conference to remember two things…if he craved dark chocolate that was me and if he found himself saying I have to pee out loud..that was definitely my trademark.

If you are interested in becoming a living kidney donor...Make life happen!

WTTW, Channel 11 Interview, May 19, 2010
http://lkdn.org/video.html

Becoming an Altruistic Donor

Since I started on this journey of donating a kidney the one thing that everyone seems to ask is...why? It's not a family member or someone that you know so why do you feel compelled to do this? It's truly not meant to be negative it's more out of concern for my well being and the combination of the whole idea being foreign to them.

I chose to do it because I wanted to make a difference. This is my way of giving and knowing that someone will have a chance at life. A chance for someone to live a more comfortable life without dialysis and to have renewed life with their loved ones. I realize this is not a comfortable decision for a lot of people. It is my mission to see the numbers of altruistic donors increase. For people to understand that living with one kidney does not change the quality of their own life.

It would be irresponsible to say that there can't be any possible pitfalls, but I feel they are minimal and that being well read on the topic is vital to making your decision. Becoming a donor is an extensive process of testing, more testing, scans, interviews and all being done for your well being as much as the potential recipient. For me personally, the positives far outweighed the negatives.

I dug into all the information I could find and I had a true advantage of being familiar with The John Brockington Foundation based in San Diego, California and The Living Kidney Donor Network based here in Chicago, started by Harvey Mysel. I looked to them both as mentors helping guide me through the process, answering questions and offering suggestions.

No one can persuade you nor should they. This must be a decision that you and you alone are determined to make. I told my friends and family members early on in the process about my decision and I would say that 95% were totally behind me. You have to be prepared for the Why question and know in your heart and head that you feel comfortable with your decision.

What I can tell you from my personal experience is that I could not be happier about my kidney donation. When I originally had my initial interviews with the psychology department and the social worker ... I was amazed at the number of questions. But as I look back, I completely understand why. We discussed for hours the pros and cons, what to expect and I had a case worker assigned from the hospital who I could speak to anytime with an concerns or questions I might have.

One of the questions asked of me is did I want to be an individual donor (one to one) or did I want to be part of a kidney pairing. My first preference was to be part of pairing because more than one person will receive a kidney by doing so. Little did I know that I would be part of such a large pairing! It was overwhelming at times but I was even more excited to think so many would benefit. Sometimes being part of a pairing is not possible depending on blood type and it must be a specific donation. I definitely preferred the pairing for obvious reasons stated before, but I also was not against a one to one donation. All I really cared about...is seeing someone benefit.

There was a time where an altruistic donor was looked at in a different light than today. It carried some very negative connotations as if one couldn't be in their right mind to want to do such a thing. Obviously that is NOT the case today. There are a lot of people out there under the misconception that you can't donate a kidney unless it's a family member or someone that you know and have a close relationship to.

WTTW Channel 11 Interview link:
http://lkdn.org/video.html

Living Kidney Donor

On April 26, 2010 I gained the title of Living Kidney Donor, without a doubt one of the most joyous titles I could have. I had wanted to donate a kidney since 2006 when I attended a Fund Raiser Dinner for the John Brockington Foundation in San Diego, California. I will never forgot that evening. During the fund raiser, a couple sitting just a few tables from us received a page...a donor had been found for their child. It sent chills up my spine. From that point on I made it my mission to donate a kidney.

I was laid off from my Director of Marketing position here in Chicago in 2009. I figured since I wasn't working, I should make the most of my time while searching and to do things I never have time to accomplish. I started by contacting The John Brockington Foundation to find out how and where do I begin? Diane Brockington was excited to hear about my mission and put me in contact with Harvey Mysel, founder of the Living Kidney Donor Network, located here in Chicago. That was the beginning!
If you would like to learn more about these two great organizations, please follow thelinks below:
http://www.lkdn.org
http://www.johnbrockingtonfoundation.org/default.php

On January 13, 2010 I had the pleasure of meeting Harvey face to face to discuss my desires of being an altruistic donor. After discussing the numerous ways to approach this, I decided I wanted to apply for donorship at Northwestern Hospital, where Harvey himself had a kidney transplant. I had already contacted Northwestern and had my paperwork completed for the application. I mailed it that very day. Four weeks later I got a phone call from the hospital to come in and start testing to see if I qualified health wise and emotionally to become a donor.
My initial tests were all fine and by mid February I was approved to move to the next phase which is an EKG and a CAT Scan of my kidneys, as well as interviews with their Social worker and members of the transplant team.

As an altruistic donor, it is imortant for any medical facility to feel confident that you want to become a donor for all the right reasons as well to have an understanding of what would motivate you to do so. They are concerned for your future well being and want to be sure that you have a clear understanding of any negatives as well as the positives. Although there are thousands of kidney donations a year, these donors are usually friends, family or have a connection with someone who is in need of a kidney. There are NOT that many altruistic donors. I have no accurate stats but I believe they are only in the low hundreds each year and my mind just couldn't accept just how low it was.

We can live a normal healthy life with one kidney, so why are more people not stepping forward to donate? It is clear that my mission is to do whatever I can to raise the awareness of of not only being a living kidney donor, but also an organ donor.

March 15, 2010 I received the official call from Northwestern that I had been approved to be a Kidney Donor. Wow...that was fast and it hit me that this would become real. I was incredibly excited. I asked when this would all happen and because I am O positive blood type and an altruistic donor, it would be the perfect opportunity for Northwestern to do a kideny pairing where more then one person would receive a kidney. Since O positive is a Universal Blood type we are able to donate to either O positive, A or B, where A can't give to B or B can't give to A. Little did I know that this would set off the largest kidney pairing in Northwestern Hospital's History. April 28, 2010

The first of April, 2010 I was asked to come in and do another blood draw to make sure that it matched my hopeful recipient. Good news, it did!

April 8, 2010 The surgery date had been set and not only set...but 8 people would receive a kidney from the exchange. This just totally blew me away. Little did I know, one person, just me, no one special, could change and make such an impact. Surgery was scheduled for April 26, 2010. I was nervous, excited, nervous, excited but definitely more excited.

I went in that morning around 5:30am, surgery at 7:30am and out of recovery at 2:00pm. My mind was racing with thoughts of I hope this all works, I hope the recipients do well and that the kidney is not rejected. I wanted a Starbucks coffee, but no can do...no food after 6pm the night before. You know how that works...when you CAN not eat..you want to and vice versa. Of course there was the typical one, please God, let me come out of this alive.

There are no words that can adequately describe this moment for me. With the exception of giving birth to my two Sons, this was definitely the 3rd best moment of my life. I wake up in my room, friends waiting and of course I am definitely sore. But not the kind of sore that is so bad that you can't function. I am advised by my nurse the sooner I get up and walk the quicker for the healing process to begin. With encouragement and watchful eyes as well as brutal teasing, my friends assist me in my first walk around the hospital floor. Ok..Im up....that was the hardest part....I start my shuffle down the hallway.

After two days, when most of us were going to be discharged, there is a Press Conference, including all of the donors and recipients. Wow this will be fun looking like I haven't showered in days (because I hadn't) and my hair looks like it's on a mission of it's own. I called Harvey Mysel to let him know about the Press Conference in hopes he can be there. I didn't know what to expect and having his support meant a great deal to me.
It was like a class reunion of the Kidney Squad. Just incredible. All 8 donors were doing great and all 8 recipients were doing great. Here I stand face to face with the man who received my kidney. His parents had flown in from Florida to be with him. Everyones eyes filled with tears and I am so thankful to God to have this opportunity. I had so many medical teams, family members, donors and recipients come up and hug me as Dr. Leventhal introduced me as the altruistic domino that started it all. I felt complete, utter calmness and joy that I could be part of such a wonderful moment and to give someone else the opportunity to have a life.

The waiting list for a new kidney on the average is 5 to 8 years. Being on dialysis more than 5 years is extremely difficult on the body and it's ability to function.
There are over 80,000 people on the waiting list for a kideny transplant.

I just completed my one week check at Northwestern on May 3rd. When I walked in to the Transplant unit, it was like old home week. All of us involved in the pairing were there and it was so great to see everyone looking good, feeling good and most importantly all healthy. All of the recipients numbers were excellent and when I asked my recipient about his progress, he said "Cara, no dialysis it's heaven and Dr. Baker said I had a beautiful kidney" I laughed and said yeah yeah I hear that all the time.

I will never have the financial means to help any organization where it would really make an impact. This was my way of giving and I know in my heart for me not only was it the best decision but a true blessing for me.
I am happy to answer any questions you may have about becoming a kideny donor. I promise you won't regret the decision. But it must be YOUR decision. Although I originally wanted to be anonymous after the press conference at Northwestern, I knew that in order for me to be an advocate of Living Kidney Donor ship, that would not be possible. I don't believe there is anything better that you can give..Make Life Happen!

WTTW Channel 11 Interview Link:
http://lkdn.org/video.html

Eight receive kidney transplants in largest swap at Northwestern
(http://www.suntimes.com/lifestyles/health/2213492,kidney-transplants-northwestern-hospital-042810.article)
April 28, 2010
BY MONIFA THOMAS Staff Reporter/mjthomas@suntimes.com
Eight people received kidney transplants from eight unrelated donors in the largest-ever kidney swap at
Northwestern Memorial Hospital, hospital officials said today.
The eight-way "domino paired kidney exchange," involving 16 patients from four states, is also believed to be
one of the largest of its kind in the country.
The surgeries took place over a three-day period last week and Monday.
All 16 patients, ranging in age from 26 to 67, are doing well, said Dr. Joseph Leventhal, one of six transplant
surgeons involved in the surgeries.
Eight living donors each gave up a kidney and eight people whose kidneys were failing got one. Northwestern's
transplant team looked for pairs where a kidney donor and their intended recipient were incompatible with each
other but matched another donor and recipient in the same situation.
The first "domino" was an altruistic donor who was willing to give blindly to a stranger. The woman did not want
to be named.
Northwestern wanted to make the most of her "remarkable" generosity by setting up a paired exchange,
Leventhal said.
Two Roman Catholic nuns who were a compatible donor-recipient match were also responsible for making such
a large exchange possible, because the nun who intended to donate was a universal blood donor, making her a
match for another person in the exchange.
Had these pieces not fallen into place, Maria Isho, of Chicago, might never have gotten a kidney after waiting
nine years. Isho had antibodies in her blood that made it especially difficult to find a compatible donor.
Isho received a kidney from Nicole Smith, of Yorkville, whose stepfather Walter Perez got a kidney from a
Georgia woman.
Also part of the exchange were a husband and wife from Champaign, a sister and brother from Chicago and
patients from Missouri and Texas.
"To think that a complete stranger stepped forward to initiate this chain is just remarkable," Isho said. "I never
lost faith, and I'm so grateful to have a second chance."
Smith said she "couldn't be happier" with the outcome, because she was able to help someone at the same time
her stepfather was helped.
Praising the Good Samaritan, Smith said, "I hope she's blessed for the rest of her life."
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WTTW Channel 11 Interview link:
http://lkdn.org/