- 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.
Monday, September 23, 2013
Three years and it is still a joy to speak with those who are considering becoming a living donor. New questions, issues and challenges for people. As I've said many times before, I would do it all again. But being a Kidney Ninja, a nickname I've been given (and not deserved) I am lucky I don't hurt myself doing yardwork, has brought me to the realization of how much I take for granted my own thinking process of being a non-designated donor.
One of the people whom I've been speaking with has a sibling that needs a kidney. She is in the testing process and is confident that being a living donor is the right decision for her. The challenge for her has been that her immediate family have not exactly been supportive of the idea.
I can respect that...as all of us have people who love and need us and are extremely anxious about the WHAT IF something happens. As I have suggested to many people make sure you sit down and talk with your family and friends. They may not understand your decision but it helps if you communicate your desire and need for their support. Edcuate them on the process as much as you educate yourself. Only you can determine if this is something you want to do. Is it the right time in your phase of life? Are you doing this under pressure and feel obligated? Have a sincere sit down with yourself and allow your family to express their feelings as well. It all comes down to you and what you feel comfortable in doing.
Another individual has a Father who's loss of kidney function is very close to needing dialysis. They have a spouse and young children. Sometimes you can hear things in a persons voice that they do not hear themselves. Since I am not a psychologist nor in the medical arena I try not to answer these questions, but ask questions to them that prompt them to think about their donating and why.
Pressure should NOT be the reason. I feel fortunate that as a non-designated donor I did not have to deal with these types of emotional issues. I had made my decision, on my own, researched, reached out to people who are well respected in the Kidney Community. I stress to everyone the importance of using due diligence in making their decision.
It saddens me to know that number of living kidney donors has declined since I firmly believe that living donors are the only way to reduce the waiting list for those needing a kidney. But I also believe the importance of someone who is considering donating to be 100% honest with themselves on their comfort level of doing so. Since we lack a great deal of data on those who are living donors and following them through their phases of life, we have to make the most intelligent decision that we can for ourselves.
I am very thankful that I was surrounded by friends and family, my two grown Sons to be there for me and support my decision. Now in saying that understand that I myself had people that asked me that infamous question...Why are you doing this when you don't have to. My answer was because I can...I can make a difference and I want to make a difference. Only you can answer that question.
There are no guarantees in life...in donating a kidney...in what will happen in your future. Sometimes there is just a leap of faith that comes from your gut that this is right for you.
Sunday, April 28, 2013
Its been three years since I donated my kidney. It seems like yesterday and with time I continue to grow and learn more and more about living donors. Many of you know that I am part of a group that started a non-profit called the Living Kidney Donors Alliance. We started this because of the tremendous need for other potential living donors who wanted the opportunity to speak with someone who has been through the process. I have been honored to mentor over 30 donors now and my kidney family continues to grow. For those of you considering donating a kidney to a loved one or be a non-designated donor like I was I truly hope you will take advantage of the numerous people in the the group who have been through this journey. So what have I learned? How important it is for potential donors to have access to what we call an "independent donor advocate". Someone who does not have any ties to the transplant center who can help guide you before, during and after your donation. I am not a medical advisor in any way and have no desire to be. I am however a strong advocate to those donating to be pro-active in their health care, questions and concerns and to be their cheerleader I suppose, in letting them know that they have a voice, someone who cares, 24 hours a day. I've learned that UNOS (United Network for Organ Sharing) which monitors and governs the transplant centers throughout the United States needs to take a stronger look at how important an indpendent donor advocate is as well as wanting to be receptive to survey feedback that has not been acted upon by the transplant centers for living donors. Too many donors have felt that they have been left by the wayside once they have donated. There should be life long annual check ups for living donors to check their creaetine levels and more importantly, no one should be denied health insurance because donating is considered a "pre-existing condition". One in 750 people are born with one kidney and don't even know it until they have some sort of medical testing that reveals it. I had one young woman that I was working with who wanted to donate and when she got to the testing phase of her kidney function it showed that she only had one kidney so she obviously could not donate. I told her that it was a blessing for her in disquise and that she should feel strong and proud that she was willing to step up to the plate and donate on behalf of a friend of hers. So why...should those who have donated a kidney be considered a pre-existing condition? I feel blessed that to report that I feel great, that my donation has made positively no change in my lifestyle. Now that I am past the two year donating mark, I will be responsible financially to have my creatine level checked each year. But I can assure you of this I have positively no regrets in donating and I only wish I could do it again. It brings a smile to my face each day knowing that the man who recieved by kidney in the kidney pairing is doing great and has his life back. I am concerned with the existing processes for donors and the unrealistic expectations of how quickly they will return to a normal schedule. Everyone heals at a different pace but over 70% of those surveyed felt it took 4 to 6 weeks to be able to go back to work full time and resume their normal duties. I have seen a few cases (very few) where the individual did return in two weeks. I still to this day am convinced that living donors are the only way to reduce the waiting list and save lives, especially with kidney pairings. But I also am in high hopes that the medical transplant community will be more pro-active for the donor, keep closer communication after the donation and that UNOS will mandate a much longer schedule of medical check-ups for living donors. Several of the LKDA group have made efforts to attend the UNOS meetings and unfortunately the reception has not been warm and fuzzy. It is almost as if they don't want to hear the feedback of living donors and their needs. This makes me sad...not for myself but for all living donors. It makes me angry not for myself...but for all living donors. There is nothing like giving the gift of life and myself and many others are dedicated to making this experience a wonderful one!
Sunday, February 10, 2013
Tuesday, December 18, 2012
Wednesday, October 31, 2012
Thursday, May 31, 2012
and it will tell you how many deceased donors transplants they have performed as well as how many living donor transplants they have done each year. So now I continue on having mentored 25 people through the donation process... and hope to again provide additional information for those who are considering be a living donor as well as continue research projects and making the Living Donor experience a better one.
Saturday, May 19, 2012
Monday, March 5, 2012
Many of you know from reading my past blogs that Harvey Mysel, founder of the Living Kidney Donors Network was and is my mentor for not only becoming a living donor, but also for being a living donor advocate to others. He has educated thousands of people on how to find a living donor as well as educate them on the many options available such as kidney pairings. LKDN has been instrumental to the well being of many recipients.
Harvey himself is a recipient of a living kidney from his beautiful wife Amy. Unfortunately Harvey is now in need of another transplant. I ask all of you who read this to please reach out to anyone you many know who is considering being a donor to think about Harvey. Below is his letter that I hope you will take the time to read about the latest conditions that Harvey is facing.
Harvey Mysel – Kidney Transplant Update March 1, 2012
The transplanted kidney I received in 2007 has been damaged as a result of the BK Virus I contracted. While the BK Virus is rare and terribly unfortunate, recent studies show that patients who have had the BK Virus do well when re-transplanted. To read more about the BK Virus go to: www.lkdn.org/Kidney_Graft_Loss_BK_Virus.pdf
I would be honored if you would serve as an advocate to let others know about my need. To do that you’ll need to know a few key things about being a kidney donor:
We are born with an extra kidney. Studies show that kidney donors live a normal, healthy life with only one kidney and are no more likely to suffer kidney failure. Go to: www.lkdn.org/Long_Term_Effect_Kidney_Donors_Health.pdf to read a study from the “New England Journal of Medicine” about kidney donors’ health after their transplant. (An interesting fact to realize is 1 in every 750 people are born with one kidney and their life expectancy is the same as someone who is born with 2 kidneys.)
As a result of the new anti-rejection drugs, the “matching” of donor/recipient has become much easier. For situations where the donor/recipient are not compatible, “kidney paired exchange” programs allow these donors to be paired and matched with other incompatible pairs. To learn more about the matching process go to: www.lkdn.org/LKDN_Matching.pdf For more information about kidney paired exchanges go to: www.lkdn.org/LKDN_Paired_Exchanges.pdf
I’m blood type A, and can receive a kidney from a blood type O or A. Interestingly 85% of the population is one of these 2 blood types. The (+) and the (-) after the blood type is not a factor for kidney transplants. If a donor has an incompatible blood type, a kidney paired exchange program becomes an option.
Organ donors need to be in good health, without high blood pressure, kidney, heart, liver or other major health issues. For more details on donor qualifications go to: www.lkdn.org/who_can_be_living_donor.html
Donating a kidney involves a major surgical procedure, and the donor is usually in the hospital 1- 3 days. The recuperation period is anywhere from 14 - 21 days for those with an office job, and about 6 weeks if the individual’s work entails more physical labor. The majority of the procedures are done laparoscopically, with 3 - 4 small holes for the instruments. A small incision is made to remove the transplanted kidney.
Medical expenses relating to the transplant are paid by the recipient’s (my) insurance company (Blue Cross Blue Shield). Donors could be reimbursed for lost wages or travel expenses.
If you would like to learn more about the donation process, please contact me and I would be happy to discuss it in detail with you.
I am working with Northwestern Memorial Hospital in Chicago. In 2010, they performed 167 living kidney transplants, ranking them as the #2 hospital in the U.S. You could contact their Independent Living Donor Advocate, Jami Hanneman, MSW, LCSW, CCTSW 312-695-0828 who could answer questions (confidentially) and coordinate donor activity.
Please feel free to pass this information along to your family members and/or friends. Telling them about my situation will raise awareness and the potential of finding a compatible donor.
I greatly appreciate your support and concern.
Monday, November 28, 2011
The Holiday Season is upon us and it's the time of year that we all start thinking about the past year and how fortunate we are. In these difficult times financially it is important to remember the things that we may have had to sacrifice are definitely replaced by those things that are true to our heart!
For all living Kidney Donors, I hope you will take a few minutes out of your schedule to take the survey below on after donation follow up care. It honestly just takes 3 minutes and it will help give us all better ideas of how we can make the living kidney donors follow up process a better one!
Cut and paste the following URL in your browser:
I would obviously love to see more people come forward and be a living kidney donor since I am convinced that is the only way we can reduce the waiting list. But I also have respect for those who would like to, but make the decision not to. It is a personal choice and only each individual can determine what it right for them. For me, I would do again if I could.
But what we all can think about this Holiday season are the small things that mean so much. It feels at times that our society has become so selfish in general that we just don't think about how important the small things are.
Share a smile just because...
Give a dollar to someone homeless and not judge what they will do with it.
Make an extra Holiday dish and share it with someone who might not be able to provide or cook on their own.
Go to the dollar store and buy a few little items to donate to children for the Holiday.
Think of someone who would love to come to your home and share a holiday meal with you and your family.
These things don't "cost" us anything but they can make such a huge difference in someones life.
Donate cell phones that you no longer need to the retailer where you have your services so they can give to a soldier in need.
Take some things that you no longer need, fun jewelry, little china items and donate them to a nursing home to be used as prizes for games that they play.
I promise you that just making one small difference to someone, makes a big difference over all. I wish you and your family and friends the happiest of Holidays!
Monday, November 14, 2011
It's been a year and half now since I donated my kidney. I am amazed how quickly the time has gone by. I've had the honor of mentoring 23 people through the process and other than donating, it's one of greatest joys.
I have noticed there are several common threads that come after the donation and are things that all donors should all have explored prior. One of the most important things to ask your transplant center, is what type of follow up program do they have for you as a living donor. If it's just a one week and one month check up there are many issues that you need to stop and think about.
My kidney donation transplant was done at Northwestern Hospital in Chicago. They have a two year follow up program for their livng donors. What I am hearing the most now from so many donors is that other than their one week and perhaps a month follow up check up...that's it.
The reality of the situation is that all tranpslant centers should have a uniformed program in following their donors. In my opinion, it should be more than two years but I am grateful that I have the two years compared to so many.
For all of you who are considering donating, ask up front exactly what their follow up program is. As a donor, it's very important to keep up with your blood work and creatine level checks. Since I am not a medical professional, I'll ask you to be sure to take the time to discuss this with your transplant team of what the normal level is...what to expect right after the surgery and how important it is for you to
monitor it on a regular basis. If they don't have a follow up program, understand that it will be your responsibility financially to make sure that you have this test performed with your own personal physician. I am personally convinced that transplant centers should have a much longer period of time that they monitor the living donor.
Make sure that your personal physician has a copy of your complete medical file from the transplant center. Your doctor will find this helpful in future testing needs.
Be sure to ask the transplant center if you have staples internally, ask what type they are. It makes a difference should you ever need an MRI in the future. Mine are titanium, which makes them completely MRI safe. You want to be sure that yours are as well since none of us know if we might need this test for any medical reason in the future.
Although most people are told not to take Advil or any type of Ibprofen, when you are discharged, there really isn't any formal list of medications to avoid..but there are. Certain antibiotics should be avoided...even over the counter common meds can contain ingredients that might not be your best choice. Therefore I suggest that you make best friends with your pharmacist. Mine has even made a notation in my file that I have one kidney. Whenever I feel that I need something from over the counter, i.e., allergy, cold, flu medications, I always ask the pharmacist if they are conducive to taking with having one kidney.
YOU must be your greatest advocate. Do not be intimidated about asking questions and calling your transplant center. That is what they are there for. There are no stupid questions. This is your body and it's up to you take the best care possible of it. Too many people are shy or feel that they are stupid for calling. Don't let this just be just for physical issues, but emotionally as well.
Many people have expressed to me frustration after donating that they just aren't up to par after two weeks. I have to say the majority of people that I have mentored did not in fact feel ready to assume their normal duties in just two weeks.
Although the superficial incisions may have healed and are much better, you must remember that the internal healing process is longer. You may feel more tired. You might not be comfortable driving in two weeeks. This is just very basic time frame.
I have known people who were back to normal in one week, but the majority really not ready for four weeks or longer. Every person is different.
It is my hopes that transplant centers will expand on many of these issues for future and past donors. Donating is an incredible experience and I have positively no regrets. I've never second guessed my decision. I would like to see the living donor experience be even better and it is my hopes that UNOS and the transplant centers will understand how valuable their living donors are and how much information there is yet to be learned from each and every one of them.
Friday, July 22, 2011
It never ceases to amaze me how many people who are becoming living donors or contemplating the idea, continue to get in touch with myself and many other donors.
There is no question in my mind that this is because of the need to hear it from someone who has gone through the experience themselves, who is removed from the medical community and can help them understand what to expect in the process and what concerns they may have in the healing process afterwards.
As I have said in earlier posts, other than being an altruistic donor, mentoring to others is without a doubt one of my greatest joys! Numerous other donors have found that to be their mission as well. Although transplant centers do educate their donors particularly from a medical perspective, it is my opinion they would do a much better job to have an in-house advocate who has been through the process and can just spend time with a donor in a relaxed environment to anwer any questions they may have and the advantage to speak with someone who has actually gone through the process. One of the things that I feel strongly about is that one of the elements that medical staffs don't understand is that so many people are intimidated by them and their mind goes blank, or they think their questions are "stupid" or a waste of the staffs time.
I developed the survey below for Living Donors to share their experience so that I am able to along with several others who are mentors, hone in on the areas that they would like to have had better knowledge about so it can be passed on in the mentoring process to new donors.
It is simple, doesn't take more than 15 minutes to complete and will help to make the mentoring process even better for those who are dedicated to helping others through the process.
Here is the link for the survey, simply copy and paste it and it's that easy!
Giving takes many forms, sharing your experience will be a great help to others. Thank you for your participation and don't hesitate to let me know if you have any questions.
Monday, June 20, 2011
June 8, 2011 was my one year check up after donating at Northwestern Hospital here in Chicago. I feel great, but you are always happy for the opportunity to have follow up care. My creatinine level with one kidney is 1.0 which is perfect. Whew... great to hear those words! I can't stress enough how important it is for living donors to make sure that they know what their creatinine level is. If for some reason you do not have follow up visits at the hospital that you donated then please be sure to consult with your primary physician and discuss how often this test should be performed. Fortunately Northwestern does have a very pro-active check up program for living donors. That is not always the case. I've heard from several donors that once they have donated, it's good-bye and thats the end of it. This is definitely something that should change with all transplant hospitals. Don't just tell us what we did was wonderful...then kiss us goodbye. Thank us by letting us know that our well being is equally important as the receipients.
June has been just the most incredible kideny month! Prior to my annual check up, on June 3, 2011, I was on my way to Washington D.C., to Georgetown University. I had been selected a couple of months ago to participate in a living donor study, which I was thrilled to be part of. The icing on the cake? Angela Stimpson, who was the first person I mentored through the living donor process was chosen as well to participate. Ok...there is no way I am not going to meet this incredible lady. I wrote Georgetown and told them that I would love to participate and that I knew Angela had been chosen as well. I asked them if there was any way possible that the two of us could be scheduled the same weekend so we could meet each other.
Thanks to Dr. Marsh and her incredible team, they made it happen.
June 3rd I landed at 12:45pm D.C. time. Angela's plane arrived at 1:15pm so I told her I would meet her in the baggage area. I was nervous...excited...nervous...wait did I say nervous? To finally meet this voice that I had become so close to over the last 10 months. To see her walking down the concourse...was incredible with her big smile. We just hugged..and it was hard to let go. What an honor and she is now mentoring to so many others.
The study was based on living donors and I do not want to compromise the study details in any way. It involved a great deal of computer tasks, written tasks, word tasks and an MRI as well as an in depth interview of my journey as an altruistic donor. I was nerous about the MRI so I told the team if there was a tumor the size of a grapefruit in there...I wanted to know. The testing lasted for more than seven hours. When I got back to the hotel I just looked at Angela and said, "you see these sweat pants I'm wearing? Thats what I am wearing tonight." Between all the testing of the day and anticipation of the weekend, I was exhausted! But I do have a beautiful photo of my brain just to prove to people I have one! I've decided to carry it in my wallet to whip out for the perfect moment.
The weather was beautiful so we walked to Martins Pub and had a postively wonderful meal. I think we both would enjoy nothing more than to just take part in studies on a full time basis. It meant so much to sit and chat with someone who appreciates your journey and you can share the moments and laugh with. This is the beauty as well as importance of mentoring others. My journey has lead me to a very special kidney sister. Once again I have to thank Harvey Mysel of the Living Kidney Donors Network who put Angela and I in contact with each other.
lkdn.org Living Kidney Donors Network
oksolo.blogspot.com Angela Stimpson's blog
kidneymama.com hosted by Nancy Murrell
Wednesday, April 27, 2011
April 26, 2011 marked my one year anniversary of donating a kidney. To be honest I can't believe how quickly the time has gone by. I woke up yesterday with a smile on my face, thinking about where I was last year, the 8 people that were able to get a kidney because of my altruistic donation and just felt that "Life Was Good".
I had a beautiful note from my recipient and had a chance to speak with him over the phone as well. I asked him to wish my kidney Happy Anniversary for me! In the evening, I attended Harvey Mysel's workshop "Finding a Donor" which was very well attended here in Chicago. As I was sitting there listening to the questions from those needing a kidney I was amazed as always of just how many people have not had access to options to receive a kidney! I haven't come up with any one answer except there is a major lack of information coming from sources who the kidney patients have contact with. Harvey Mysel of the Living Kidney Donors Network is the person that is providing this much needed information for these individuals.
As a donor and mentor to others who are either donating or considering donating, I am equally an advocate of the need for EARLY education to those needing a kidney.
As the number of those who need a kidney continue to grow, now up to 88,000 on the waiting list for a deceased donor and most likely a 5 year wait...I am convinced that living donors are the only way to see this list decrease. Last year when I donated the waiting list was 83,000. In just one year another 5,000 have been added.
11 people die each day waiting for a kidney. So when people ask my why I donated my response is...because I can make a difference.
After the worshop several people who attended said to me "You are a really special person to donate a kideny" My response to that is "there are a lot me's out there"
I've had the pleasure of mentoring to many altrusitic donors. Angela Stimpson being one of them who has an outstanding blog and continues to be a mentor and advocate to others. I am not unique or special...I am however devoted to seeing kidney recipients have their deam come true in getting a kidney and being able to live their lives without dialysis.
I respect and understand that being an altruistic donor is not for everyone. What I can share with you is that if I could do it all over again...I would in a heartbeat.
Tuesday, January 25, 2011
As an altruistic living kidney donor, there is one thing other than my donation that brings me incredible joy...that is to mentor other individuals who are thinking about
becoming a living donor. I feel blessed to have met so many incredible people while mentoring. It's as if I have a "kidney community" of wonderful friends. I hope all of you will take the time to read Brenda's journey...as she too would like to become a mentor and advocate to others who would like the benefit of communicating with others who have been through the process.
I read the newspaper every day...my journey began this past Summer when I came across an article about a man who lost his 16 year old daughter in a tragic car accident. His daughter was an organ donor and he was very inspired when he learned that her heart valves saved another person's life. In her memory, he became an advocate to encourage people to become organ donors. Early on he learned of the need and the opportunity to be a living kidney donor...and he did just this...which is what the article was about.
I too had made the decision to donate my organs upon my death. But before reading the article this past Summer, I had no idea that it was possible to be a living kidney donor. I had no idea how many people were on the waiting list for a kidney, 87,000 and continues to rise. Over 5,000 people a year die while waiting for a kidney. I did not realize that an individual can lead a normal life with one kidney. In fact 1 in 700 are born with one kidney and lead a perfectly normal life. Furthermore, I was encouraged to hear that the donor's surgery is laparoscopic which is far less invasive then traditional surgery...so this means a much shorter recovery time. Although there is a risk in any surgery, being a living kidney donor overall is very safe.
I am a Christian and therefore I seek out God's wisdom through prayer before making any major decisions. Before I even finished reading the newspaper article, I felt God prompting me to consider being a living kidney donor. I imagined what it would be like for one of my family members whose kidneys were failing and in need of a kidney transplant...knowing that his/her life would be greatly compromised and significantly shortened. Undoubtedly, a few of my family members would step up to donate...but...what if we learned that none of us were a match? This happens approximately 30% of the time. Being a family member doesn't automatically mean you are a match to another family member. We would be disheartened and feel that hope was lost. The average waiting list for a deceased donor kidney is approximately five years. But then imagine being told that there is an option called a kidney pairing! A kidney pairing can be done if you are not a match for a specific recipient and the same situation exists for another donor and recipient but you match the others recipient. Hope is given back!
My decision to be an altruistic donor came after praying to God for guidance, talking with my husband Mike and my sister Stacey. Putting myself in "someone elses shoes", and reflecting on the forty-three years of good health that God has blessed me with...for me it was a fairly easy decision.
In the subsequent weeks I did further research on the internet on the topic of being a living kidney donor. This research included reading about the experiences of two recent altruistic donors, Cara Yesawich and Angela Stimpson (oksolo.blogspot.com). I found their blog sites to be very informative and inspiring. Another valuable site with a wealth of information is The Living Kidney Donors Network (lkdn.org). Harvey Mysel started the Living Kidney Donors Network and is a recipient from a living donor as well. His site is dedicated to those who need a kidney as well as those who are interested in being a living kidney donor. I printed several articles from this site for my family members to read so they could fully understand the process and minimal risks.
A very valuable resource of information and support to me during my journey of becoming an altruistic donor, was the mentoring I received from Cara Yesawich. Cara is the altruistic donor domino that allowed 8 people to receive a kidney in Northwestern Hospital's largest kidney pairing in April of 2010. She is passionate about being a mentor for others who are on this journey and came to the hospital to offer her support immediately following my surgery..what a blessing she was to me! For anyone considering becoming a living donor, I strongly encourage you to take advantage of the "gift" of having a mentor. I welcome the opportunity to share my experience with anyone. My email contact is firstname.lastname@example.org
My surgery was on December 30th and because I am an altruistic donor, 3 people were able to receive a kidney in a pairing at Northwestern Hospital. I experienced moderate pain the first several days and slept a lot. After a week I turned the corner and was able to return to work half days (my energy was still not at 100%)I was back to work full time by the third week and am now about four weeks out from surgery and back to normal.
I plan on starting to run again in a week or two and am registered to run another marathon in September.
I received a beautiful card from the family of the gentleman who received my kidney in the kidney pairing..part of it reads:
It is impossible to thank someone for a gift such as you have given to us.
Dialysis allowed my Dad to live, but your gift of a kidney has given him a
renewed quality of life worth living, and for that, we are eternally grateful.
The sacrifice that I made in donating one of my kidneys was minimal compared to the gift of giving an improved quality of life, which I was able to give someone else.
The Living Kidney Donors Network - lkdn.org
Angela Stimpson, Altruistic Donor - oksolo.blogspot.com
Kidney Mama, Nancy Murrell - kidneymama.com
Tuesday, January 4, 2011
I wish all of you a joyous New Year filled with hope and love. On December 30, 2010 I had the pleasure of visiting "Brenda" at Northwestern Hospital who is an altruisitc donor like myself. Brenda is my eleventh "kidney sister/brother" I have had the pleasure getting to know. Brenda had contacted me to gain insight directly from someone who had been through the process and we spoke for almost two hours during one of her visits for testing at Northwestern Hospital before her procedure.
Because of Brenda's altruistic donation, three people received a kidney! I am convinced that there are many out there that would like the opportunity to contact others who have been through the surgery to ease their minds and answer the questions we always seem to forget to ask. For those of you new to my blog and would like the history of my journey donating a kidney, please be sure to go back to the older posts to read the experience from the beginning. It will help answer questions you may have.
That is one of the reasons I like to not only speak with people myself, but refer them to others that I know who have been through the process as well such as Angela Stimpson who has a blog called oksolo.blogspot.com as well as Harvey Mysel, founder of The Living Kidney Donors Network, lkdn.org Brenda will be putting together her story for me and I will share that with you all on the next posting.
My surgery was on April 26, 2010 at Northwestern. I was the altruistic donor/domino that allowed eight people to recieve a kidney. Since then it has been my mission to serve as an advocate to other donors as well as to The Living Kidney Donors Network.
I received the Circle of Honor Award at the John Brockington 9th Annual Pro Athletes for Life Gala in October 2010, appeared with Harvey Mysel of the Living Kidney Donors Network on WTTW Channel 11 here in Chicago, have attended several fundraisers for kidney donor awareness and I am sitll amazed at how many people are totally confused about the Living Donor process and how it works.
Just to add a little humor here, I literally had a woman who heard that I was the domino for eight people to get a kidney and she came up to me to congratulate me and dead seriously asked, did they cut your kidney up into eight pieces? I had that deer looking into headlights look and certainly didn't want to make her feel uncomfortable. So I explained how the kidney pairing works. This posting I want to clarify what the difference is between a designated donor and an altruistic donor.
A designated donor is someone who has a loved one, friend, or someone that they know, who needs a kidney and are willing to donate one of their kidneys on their behalf. Now, understand just because you are a family member or friend, you are not always a perfect match for the person needing a kidney. BUT, the good news is, that doesn't stop them from getting a kidney. You will go through testing to determine if you are an appropriate match for your recipient. If you are not, then you should discuss being part of a kidney pairing, where your kidney would go to someone else who is a match and that persons designated donors kidney would go to the recipient that you know.
An altruistic donor, is someone like myself and many others, who would like to donate a kideny but does not have someone to donate to. It is something I wanted to do to give someone else an opportunity for a better life and avoid diaylsis.
With an altrusitc donor, sometimes hospitals can use the altrustic donor as the "domino" for a kidney pairing. Sometimes its two people sometimes its six and in my case, eight people (16 people total involved in the pairing) received a kidney.
The fact the someone donates a kidney, a gift of life, is a blessing beyond words for the recipient.
There are no stupid questions. When you or someone you love is suffering from kidney failure, don't hesitate to research and contact as many people as you can. The Living Kidney Donors Network, lkdn.org is dedicated in explaining all options for the recipient as well as the donor. One of the new programs that The Living Kidney Donors Network is offering is a beautiful starfish to thank those of you who have received a kidney and would like a special way to thank your donor.
One of the most common things I hear from people who I have mentored is "I can't believe more people aren't doing this". Well as with anything, not everyone is alike but for those of you who have, or are going to donate I can assure you that it is a decision you will not only never forget...but never regret.
It's one thing to drive a new mercedes up to someones door and say surprise!!! But when you give someone the gift of life...how do you possibly top that? I consider it a true honor to be a living kidney donor.
Friday, December 17, 2010
Well its officially six months since I donated a kideny. I just completed my six month check up and I am happy to say that after extensive blood tests, all is fantastic. My creatinine level is perfectly normal with my kidney. I will go again in six months for the same tests. It was quick, painless and always a nice relief to know that everything is great.
With the Holidays upon us and all the thoughts of family and loved ones that we experience it is truly a time of thanks for so many reasons and I am so happy that
because of my altruistic donation, eight people are celebrating the holidays along with me! You can't ask for more than that.
In the past two months I have been spending time and mentoring 5 new altruistic donors through the donor process. One is here in Chicago and she will be donating on December 30, 2010 in a pairing. She is a lovely lady inside and out and I so enjoyed spending time with her this past week. I look forward to seeing her following her surgery. She was thrilled with the information on The Living Kidney Donors Network that I referred her to and she printed the information for her family. She found that it was easy to understand the process and made her family feel more at ease about her decision to donate.
The greatest joy of the Holiday season...or any day for that matter is giving. Giving doesn't have to be expensive. Even if you are not considering to be a living donor, you can pass the information along to someone you may know who either needs a kidney or is thinking about donating. It still boggles my mind how many people who need a kideny have not been told about living donors and kideny pairings.
To all of you who have been reading my blog I thank you and hope the information has assisted you in some way. For those of you who have written to me and spoken to me, I consider it an honor to share in your donation process.
Wishing you all much joy, love and happiness!
Be sure to visit these sites.
lkdn.org The Living Kidney Donors Netowrk
oksolo.blogspot.com Altruistic Donor, Angela Stimpson
Wednesday, November 3, 2010
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
Tuesday, October 19, 2010
The John Brockington Foundation held it's 9th annual Pro Athletes for Life Gala on Tuesday, October 5, 2010. It was held at the San Diego Hall of Champions in Balboa Park in San Diego, California.
Myself and Ann Lopez who donated to her husband George, were both honored with the Circle of Honor Award. This evening was beyond any of my expectations and I can not tell you how honored I was to receive this award. To stand and speak at the very event that I attended four years ago and inspired me to want to donate a kidney was extremely emotional. It was my moment to share how much I believed that Living Donors would be the answer to the never ending and growing numbers of those waiting for a kidney. It also allowed me the opportunity to speak on how important it is to share the mentoring process with others who are thinking about donating.
It has been such a joy to me to speak with others such as Angela Stimpson, Robyn Wheatley and several others who wanted the chance to communicate with somone who had been through the donor process. They are now advocates for others as well. I am totally convinced that many do not understand the living donor process. Harvey Mysel of The Living Kidney Donors Network has now started several new programs, one focusing on mentoring to those who wish to speak to others who have gone through the donation process. I am also convinced that the general public has major misconceptions of being a donor. Many people who have a loved one that needs a kidney do not realize that just because they are not a perfect match for their loved one, that they can still be involved in a pairing with others so that their loved one can receive a kidney from a living donor.
What is amazing is that those of us in good health can give the gift of life to another. I understand and respect that there are many people that don't feel the same way about being an altruistic donor. I think all of us can appreciate that when a loved one is need, it's a no brainer. So when people ask me why I decided to donate without having to....I respond...because I can...make a difference. I CAN give life. That is a decision I will never regret.
The John Brockington Foundation has been a driving force for people to sign up and beocme organ donors and now has opened the door to include living donor ship as well. At the Gala John and Diane Brockington received the Donate Life Award.
The purpose of my blog is to share the experience and spread the word. But for any of you reading this, it also will give you knowledge should your path cross with someone facing the need of a kidney to help them explore options.
Please be sure to visit the following web sites for more insight to Living Donors!
lkdn.org The Living Kidney Donors Network
oksolo.blogspot.com Angela Stimpson, Altruistic Living Donor
johnbrockingtonfoundation.org The John Brockington Foundation
Friday, September 3, 2010
The following is announcement from The John Brockington Foundation for it's 9th Annual Pro Athletes For Life Gala. I can not tell you how thrilled I am to be attending this event and receiving the Circle of Honor Award. Many of you have read from my earlier blogs that this is the event in 2006 that made me realize..I wanted to donate a kidney. So it will be incredible to share in this event that will be focusing this year on Living Donor Ship! Since it's inception JBF has been striving for years to make people aware of how important it is to become an organ donor, something I have always felt passionately about as well. It's incredible that they are now including the importance of Living Donors as well. It just shows their dedication to finding ways to reduce the number of people waiting for a kidney.
The last month has been very busy for me working with numerous people who have contacted me that are either going to be donating a kidney, or are thinking about doing so. It has been such a pleasure to develop these relationships and to be part of the mentoring process. I have also been working Harvey Mysel of The Living Kidney Donors Network here in Chicago on workshops to help educate those who need a kidney to be pro active in finding a donor. One of the incredible individuals who I have had the honor to get to know is Angela Stimpson in New York. She is an altrusitic donor as I was and she has a fantastic blog that you should definitely take a look at: http://oksolo.blogspot.com/
Angela will be donating a kidney on September 22, 2010.
The challenge always remains to keep educating people on the idea of being a Living Donor. There is no question in my mind that this is imperative to lower the number of candidates waiting for a kidney. The average waiting time for a deceased donor kidney is five years. That means five years on dialysis. I respect that this is a very personal decision. It is not my mission to make anyone feel obligated to do so. It is my intention to continue to speak and educate people on the advantages of being a living donor, altruistic or not. According to the latest figures from the OPTN site there are now 86,000 people waiting for a kidney. That figure has risen from 84,900 back in April with an additional 1,100 in just four short months!
Friends, it’s that time of year again—to mark your calendar for Tuesday, October
5th. My foundation is hosting our 9th Annual Pro Athletes For Life Gala at the San Diego Hall of Champions in Balboa Park. This wine and hors d'oeuvre reception will feature music, silent and live auctions, and yes, the popular Celebrity Champagne Pour. Join members of the transplant community, sponsors, friends, and Pro Athletes for Life on Tuesday evening, October 5th in a special tribute to living donors, including Ann Lopez who donated to her husband George and our own Cara Yesawich, inspired to become an altruistic donor after attending a JBF Gala.
Ninth Annual Pro Athletes for Life Gala
Tuesday, October 5
6 PM—9 PM
Price: $75 per person, $125 per couple
San Diego Hall of Champions
2131 pan American Plaza
San Diego, CA 92101
RSVP for tickets to 619 299-4426 or
visit our website www.johnbrockingtonfoundation.org
Please join us as a sponsor or guest to make this Ninth Annual Pro Athletes for Life gala one that we remember for bringing us together in difficult times and for the generous and loyal spirit of our friends.
The John Brockington Foundation
Give the Gift of Life
Wednesday, July 28, 2010
It has now been three months since my surgery to donate a kidney. I feel as if I am at 100%! Since my surgery I have been corresponding with four different individuals about my experience. The story I am posting below comes from Robyn Wheatley who is an altruistic donor like myself. Although Robyn had already made her decision to donate a kidney and had been approved as a donor by Northwestern Hospital, she still wanted the opportunity to speak with someone who had actually gone through the process.
She had read the article of my kidney donation in the Naperville Daily Herald and found the link to my blog. She sent an email asking if I would consider meeting with her for coffee one day and of course I was thrilled to say yes. What I find interesting is with all the support of medical knowledge, there is still a great need for anyone who is a living donor to offer to assist others who want to know what to really expect. Understand that I don't mean medical knowledge, this is out of my area of expertise. But I believe that each living kidney donor can greatly assist others who are donating or considering donating by being accessible to them and sharing their journey.
Robyn is an incredibly brave, smart woman and I am honored to have met her. I asked her to write her story to share with others as it is her desire to be a mentor to others.
My Altruistic Living Kidney Donor Story
July 23, 2010
Yesterday I met the man who now has my left kidney. He had no idea who I was prior to our meeting yesterday, and I had no idea who he was. We were strangers. For both of us, I am confident in saying, our identities and what we looked like did not matter. But, we are no longer strangers. With tears of joy, he and I hugged and exchanged a nervous greeting and shared an appreciation for what had just happened not yet a week prior. His life has been changed in obvious ways, but this process has indeed changed my life in less obvious ways; it has made me re-evaluate the value I place on my own life and relationships. I will be processing this for some time to come. But I’m getting ahead of myself with the story.
On Thursday, July 15 I donated one of my kidneys to a complete stranger, starting off a chain for a kidney swap. (See The Alliance for Paired Donation for more information on how altruistic donor chains work.) I had the surgery at Northwestern Memorial Hospital. Very simply, I did this because I can. The decision I made had come after a lot of research and consultation, and much time and effort.
I was inspired to start this process back in March as I read the story of another local man’s recent decision to donate a kidney to a cashier at a food store he frequented over the years. He learned of the woman’s progressively deteriorating health and was made aware of her kidney disease. She had exhausted all possibilities with family members and close friends-no one was a match. The man offered to get evaluated as a potential donor. It turns out that he matched her well, and the rest is history. The woman gets to live a longer, fuller life of many years and will no longer be subjected to the torture of dialysis. That was all I needed to hear. After doing some initial research (of which there is a plethora) I called Northwestern Memorial Hospital’s kidney transplant program. Their reputation precedes them.
I do understand and appreciate that what I have done is unusual. It is not for everyone. As I have shared this news with people I received wonderful support and encouragement; there have been a few looks of puzzlement; and, lastly, there have been many who still can't seem to wrap their heads around why it is I would choose to donate one of my kidneys to someone whose identity is unknown to me, not a family member, not a friend, not even an acquaintance. Regardless of the response, I know that all of the comments come from a place of love and concern, and include people very dear to me.
The transplants were “successful”, and both recipients are doing well. It turns out all of us in both pairings live near and within Chicago's city limits, and we are all in our 30s. The recipient of my kidney laughed and said that his girlfriend, who coincidentally donated her kidney to the recipient in the second pair, when it was found that she was not a match for my recipient, was certain that his donor would be a woman. Well, he said, “she was right.” As we walked out of the transplant center today I said, “Don’t be surprised if you cry more easily now; that may be my influence. I am known to be openly emotional." He assured me he’d take good care of his new, healthy kidney, and I was certain he would-never a doubt, not really something I even pondered to be honest. If anyone would not take a healthy transplanted kidney for granted, it’s someone like these two recipients who have each spent years on dialysis not knowing when, where or if a transplant would ever be a possibility.
As I’m reflecting on the meeting with the recipient of my kidney and the woman in the second pairing I am wishing more people knew the facts about living kidney donation and how little effort was involved relative to the life-changing/life-saving that has been made possible with my left kidney. I would do this again in a heartbeat if I could. The transplant team did all of the hard work with comprehensive evaluation of myself and matching with the recipient and pairs. My hard work came immediately after the surgery, if I can even call it hard work. If I had more kidneys to donate I would do so, it is that powerful. The woman in the second pair of the chain had just had a difficult conversation with the transplant team; she was not sure she had many options left. But, as an altruistic living donor in the equation I was able to indirectly give her back quality and quantify to her life; it has given her back hope and future possibilities. What a small price I paid. My one-pound kidney represents so much more than just an organ and returned functionality to another; it is a gift that my body was able to provide-it is life. And, the gift is not just from me to the then-stranger in need, it is to me as well. It’s reaffirming, makes me want to appreciate my life and everyone I have in it with me, something that’s not come so easily in the recent past. Words seem inadequate to describe the experience.
Please feel free to contact me with any questions or if you are looking to converse with someone who has been through the process:
These are other sites you should definitely visit:
Living Kidney Donors Network - lkdn.org
Ok Solo, Angela Stimpson, Altruistic Donor - http://oksolo.blogspot.com/
WTTW Channel 11 Interview: