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.

Wednesday, November 3, 2010

The Living Kidney Donors Network, My Mentor, Harvey Mysel

It has now been 6 months since I donated a kidney altruistically. I feel great! It still boggles my mind that I was the domino for eight people to receive a kidney at Northwestern Hospital. Never did I think that my donation could create such an incredible pairing. But it did.

It’s been a long over due thank you that I owe to Harvey Mysel, Founder of the Living Kidney Donors Network here in Chicago. Although I realized my desire to donate at the John Brockington Foundation four years ago, Diane Brockington was the one who put me in touch with Harvey Mysel. Harvey is here in Chicago and is a recipient of a kidney from his wife Amy, I figured the more input on the topic the better.

It’s one thing to do hours and hours of research on the topic, which I did. But it’s another to be able to sit down and actually speak with someone as knowledgeable as Harvey and has been through the process as well as his wife’s experience as a donor.

I will never forget the day that we first met. It was at the coffee shop right by Northwestern Hospital on January 13, 2010. I didn’t know what to expect. What I found is an incredibly smart man, who is dedicated to getting the word out to those needing a kidney of their options. Options that so many people have YET to become aware of or been educated on.

Harvey started the Living Kidney Donors Network in 2007 and I can assure you that his heart and soul are dedicated to those needing a kidney. He does numerous workshops, outreach programs and Harvey…without a doubt….was my Mentor. I was so very fortunate for Diane to make this introduction for me.

We spoke for nearly an hour and half and I was quite surprised to find out that there are not a lot of altruistic donors. Before our meeting I had just completed the necessary paperwork for Northwestern but had not yet mailed them in. I had also registered with the National Kidney Registry.

Harvey took the time to walk me through the process of becoming a donor and after our meeting I decided to go with Northwestern since that is where Harvey and his wife had their surgeries.

His workshops are outstanding and I’ve had the honor of attending and participating in several of them. One of his workshops is focused for those needing a kidney. This work shop helps those waiting for a kidney look into other options in addition to the National waiting list for a deceased donor, which is approximately a five year wait as of today. Stop and think about this for a moment. You are told that you have a five year wait for a deceased donor. You need a kidney…you are most likely going to have to go on dialysis which is extremely tough. Do you just stop there and accept the fact that you are going to have to wait five years and HOPE that you receive the call for a kidney?

If I were on the other side as a recipient…I’d want to know EVERY SINGLE possible option for kidney transplant. Where do I start? An easy question to answer... The Living Kidney Donors Network, lkdn.org. There is a wealth of information, webinars and workshops for those needing a kidney. Harvey has assisted SO many people with his foundation and the information is right at your finger tips! Harvey makes himself so available to everyone, donors and recipients. From the medical perspective, a kidney from a living donor is the best possible scenario a receipient could ask for.

When I sat through my first workshop with Harvey, I was truly amazed how few people in the audience really understood Living Kidney Donation. I thought. how can this be? Why are these people not aware of this information? So many were under the misconception that if a husband, wife, loved one or friend wanted to donate, but were not a match..that that was the end of it. BUT ITS NOT! This is what kidney pairings are all about! I truly hope you will take the time for visit lkdn.org to gain a better understanding of kidney pairings. As a Director of Marketing I see a huge challenge in getting this information out to the general public in a clear, concise way. Then I ask myself…well why aren’t they hearing about this earlier, from their primary care physician, their nephrologists.

I have always been an advocate of being an organ donor. I realize that being a Living Donor is not for everyone…but it certainly was for me! I know there are many others like me. I am not special. I just wanted to make a difference.

Since my donation I have had the pleasure to mentor four others through the process and am now working with two new donors. Harvey Mysel recognized the need for those considering donating, the opportunity to speak with someone else who had actually donated. So he started the mentoring program. Other than donating a kidney what brings me pure joy is the opportunity to speak with others wanting to donate. It gives me even more pleasure to know that they will now be incredible mentors to others.

I would think any hospital, dialysis center, nephrologists and social workers, would want Harvey Mysel at their finger tips. They do…they just need to take advantage of this incredible foundation and the numerous workshops that the Living Kidney Donors Network offers.

Harvey, I thank you for your hours of time speaking with me..guiding me…through every step with respect and care and for being my mentor! Know that I am your biggest fan!
Thank you Diane Brockington for leading me to Harvey. The Living Kidney Donors Network is exactly what all donors and recipients need. Unbiased, truthful information and most importantly….hope!

The Living Kidney Donors Network, lkdn.org
The John Brockington Foundation
Angela Stimpson, OkSolo.blogspot.com
Kidneymama.com Nancy Murrell


angela stimpson said...

Ditto! I "heart" Harvey, too! And, had I never been contacted by Harvey, I never would have met you :-) Double dose of goodness!!

Diane Franks said...

Here in the UK (I suppose because we are a much smaller country really only being the size of one of your states!!) the waiting list is fortunately about half the time as it is in USA. Although 2.5 years is long enough to wait for a kidney 5 years must seem so far away as to never be reached at times especially when on dialysis for all those years.

Living Donor programme has been around for a while in the UK but the first altruistic donation was only in 2007 as it did not become legal until end 2006. I believe there have only been around 42 altruistic donors in the UK. I donated earlier this year and run a UK site to help support people wanting to donate http://LivingKidneyDonation.co.uk and am at present helping 3 people as they go through the evaluation process. I don't know who received my kidney but I was told that the operation was a great success and they were doing fantastically. That was the sweetest music to my ears.

Of course living donation is a very personal choice and cannot really be promoted by the health authorities. So the more we the public can inform people the more chance of someone making that personal choice to help someone else.

How wonderful though to find you were the start of 8 people benefiting and getting their lives back. Wow .... that is just truly inspiring and amazing.

Great story to read and just shows that we never know what is around the corner. People waiting for transplants never let "hope" fade.

I wish that there had been someone in the UK like Harvey for when I donated as it was rather a lonely time not knowing anyone who had been through the same thing. Hopefully now othe people in the UK wont feel so isolated as there are people here now to support who have been through the experience.


Cara said...

Dear Di,

Thanks so much for your comment. I can completely understand what you mean about being alone. I was so fortunate to have Harvey Mysel and the Living Kidney Donors Network.

I agree with you, our altruistic donor numbers are about 350 each year. The more people like yourself and others share their knowledge, their passion for the cause the better!

Thank you so much for sharing your story and being such a selfless, compassionate person and giving the gift of life! Thank you also for sharing your story!!


angela stimpson said...

Great photo of you two!

Cara said...

Angela, thanks!!! Guess when that was taken? The day I got out of the hospital so I have those glazey, lazey eyes and I just want to go home and take a shower! You know the look!

Bob said...

You stated "So many were under the misconception that if a husband, wife, loved one or friend wanted to donate, but were not a match..that that was the end of it. BUT ITS NOT! This is what kidney pairings are all about!". This is SO TRUE. And you should not worry about how good of a match you are, either. My wife and I were part of a kidney donation chain just last week. She needed a kidney and is blood type O. I was willing and able to give a kidney, but I am blood type AB. This makes us the hardest possible match to fit into a living kidney donor chain as she can only be matched with another O and I could only be matched with another AB. However, after just one year, we were able to be matched into one of these chains. This saved my wife at least four years of having to endure dialysis. Please, please, do not give up just because you are not a match! Find out more about these living donor chains!

joseph muita said...

excellent post!