As we get closer to receiving “the” call tomorrow from Milwaukee and Madison transplant teams, one’s thoughts start to wander to the seriousness of the path we may be taking. There is no magic bullet for a person who has no functioning kidneys. All remedies are loaded with risks, side effects, life style implications. Thoughts are moving from jubilation at the prospect of being given a choice to fear and apprehension from all the “what ifs” surrounding very risky and complicated organ transplant surgery. Let’s see…Let Go Let God…..Keep the Faith…..What Will be Will be…..Fate….Destiny…. Turn it Over… How does one get comfortable with the daunting prospects that lie ahead? How about turning to the awe and wonder of life. Turning to the love and support that surrounds us from our beautiful family and friends, the wind beneath our wings. There may be no magic bullet to fix Gary but there is the Magic of Love.
No Magic Bullet
From Science Fiction to Miracle
Yesterday we spent yet another day being re-evaluated at yet another kidney transplant center. Although now, it is different. There is urgency in the mix. Yes, when Gary turns 80, in 9 months a kidney transplant is off the table. Sitting with the Froedtert Hospital kidney transplant team members it felt very different. It is no longer a theoretical conversation. Now we are asking for another human being who has lost their life to give Gary one of his or her organs to then put in Gary’s body to help him live longer and have a better quality of life. Oh My. Years back this would have sounded like material for a science fiction movie. The medical community has come so far. What a miracle. I/We are in awe. We do not take this lightly. We feel there is a very good chance Milwaukee will pass on Gary. For many reasons, I would guess, but we are speculating that his age and the wait list at their place is just not a good fit. Their wait list is 6-8 years. Gary would be ineligible by the time a kidney would probably be available at their center. We could be wrong but don’t think so. They will call us this Friday, March 29, with their answer. Are we grateful to science and all the people who came before us, those who have lost their lives and those who have gained life as a result, yes. Grateful to the moon and back. Filled with love and appreciation for the gift of life.
Choose to Live
Thanks to all of you who attended our Prayer Circle yesterday. It was so beautiful and fortifying. A special thank you to Rabbi Karyn Kedar and Cantor Jennifer Frost who facilitated the service. I would like to share with you a writing by Rabbi Kedar that she shared with us at the Prayer Circle.
There is a moment in time where you see a flash of light, or feel a slight wisp of wind or notice a momentary pause as if the world is holding its breath.
And then suddenly, at that moment, your life comes into focus. And it is that very moment in time that beckons you to take a turn in the road and step on a path that leads you to the truth of who you are.
And in the moment, in the light, in the whisper of wind, in the pause you have a choice that can change your life forever. You can choose to live. To really live or to simply get along. Choose to live.
-Rabbi Karyn D. Kedar
We are forming a Prayer Circle to support Gary and his care team. We will be gathering this Sunday, March 24 at 11:30 am at Congregation BJBE, 1201 Lake Cook Rd., Deerfield, IL. Join us. If you do not live in the area or you are unable to attend we ask that you send good thoughts to Gary and his care team from afar. Thank you. Love, Marti
Living Donor Call Out
Hello. Me again. I wanted to explain that in addition to the steps we are taking to get permission to move forward with a deceased donor, we are also trying to reach the 6 living donors who stepped up a few years back to donate their kidney to Gary. Northwestern Hospital will not reach out to those people so we are trying to do so on our own. If you or someone you know was willing to donate their kidney to Gary a few years back, please know we need a kidney now. If you are still willing and able to do so, you need to contact us or contact Northwestern Hospital to let them know you are still a willing living donor. Please move quickly. Thank you so much. With love and gratitude. Marti
It has been a long time since we last “spoke”. Well, Gary has been on peritoneal dialysis now for 4 months. He gets these treatments 7 days a week at night at home for several hours. Thank goodness it has been helping. Grateful for that. Unfortunately there are issues that are associated with this option. What you may not know is that Gary did register with two kidney transplant center donor lists four years ago, just in case, so glad he did; one in Madison, WI and one in Milwaukee, WI. Thank goodness he was advised to do this. He was told by his doctors to keep all of his options open. We have been told by both centers that the door is closing on the kidney transplant option. In nine months he will no longer be eligible for a transplant. Soooo, we have been very busy. He has been taking medical tests, meeting with both Wisconsin transplant teams, etc. Big Decisions to make….does he stay on peritoneal dialysis for as long as his body permits or does he request and hope for a transplant, knowing the transplant option will be permanently off the table very soon. Gary has chosen to move forward with a kidney transplant now. There is one more hurdle. Both Madison and Milwaukee need to do a transplant team review of his case before they can agree to put him on the active list. These reviews will be done over the next couple of weeks – so we should know soon whether it is a GO for a kidney transplant for Gary. We are staying hopeful. More again soon. Marti
Learning to Dance
Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.
Hi dear family & friends. Happy St. Patrick’s Day to those who celebrate!
As Gary and I put on our dancing shoes while weathering the fluctuating conditions on our journey it would be most helpful if we could find a couple of people who enjoy writing and have a creative flare with words who would be willing to serve as volunteer bloggers for us. We are looking to post once a month for now. Maybe more frequently down the road. Can explain more about what we have in mind once we hear from you. I can be reached at firstname.lastname@example.org. Thank you. Love, Marti
Long Time No “Talk”
Hello to our dear friends and family. It has been quite some time since we last spoke. Well, we would like to do something about that. We have decided to resume our “conversation” with you. Gary has seen many ups and downs since we were last in touch. The good news is that he has remained stable. Grateful for that.
As we move forward on this wild ride we thought it would be helpful if we reconnected with our loving support community. So, you can count on hearing from us every now and then as our journey continues. Join us in fastening our seat belts and navigating this crazy ride. Much love, Marti.
Gary Shares His Story……………..
I’m here to talk of my life–saving journey, an unbelievably humbling as well as inspiring one, I must say.
My journey has been quite long, starting in 1978, when I was diagnosed with Chronic Kidney Insufficiency, having had only one kidney, and that one was functioning at about 50%. Now, that’s the good news in that my kidney has lasted so long, way beyond any expectation of my doctors. I don’t fit any of the traditional predictable kidney trends. For that, I am eternally grateful.
The bad news is that last October I suffered from a severe viral infection that affected my kidney functioning to the point of reaching the stage of renal failure. At that point, my nephrologist recommended I find a live kidney donor in anticipation of a transplant, since she predicted that my kidney would totally fail within 3 to 6 months. This action would be the best choice for me over a deceased donor kidney or dialysis. A deceased donor was not really an option because there is a 5 to 7 year waiting list, and a transplant versus dialysis was my best opportunity for a better quality of life and a greater life expectancy.
As you might imagine, this really threw me into a major funk, a numbness that drained all the life out of me. It wasn’t just the reality of the seriousness of my illness, but now in an effort to find a kidney, I also had to make very public my need for the help of others and my own vulnerability. This ran very counter to my own internal proclivity to be private as well as self-reliant, but it was to be the first of many, uncomfortable personality stretches that though painful at first, in the end presented me with the opportunity for personal growth.
My saving grace was my wife Marti, Team Gary, and BJBE. Marti was the impetus, the organizer, the cheerleader, the driving force, and my guardian angel for a remarkable team of family and friends that carried out a national campaign to find a kidney for me. This gesture just blew me away, fueled my spirit and soul with hope, as well as further validated my faith in humanity.
Team Gary was uplifting and inspirational in its belief that failure was not an option. Harvey Mysel, a double kidney transplant recipient himself, provided us with the roadmap of how to set up our multifaceted campaign. After educating ourselves on what steps to take, we contacted our niece Laura, and within 24 hours, she set up a webpage and a Facebook page to spread our message. Then, Marti reached out locally and around the country (California, Florida, New York, Oregon, Virginia, and Washington) to convene our team. The team was a source of innumerable creative resources. There were posters put up throughout various communities, buttons worn, a You Tube video, a website with weekly blogs, a Facebook page, Twitter accounts, business cards, flyers, Emails, tables with volunteers at events, Pioneer Press articles, JUF News articles, reaching out to churches, synagogues, corporations, universities, alumni associations across the country and more, much much more.
The BJBE crusade was particularly heartwarming to me. Marti presented a number of options how they might help to the clergy and staff, and their response was that they would not just do all of them, but more. Immediately, a congregational –wide Email was sent out by the clergy, personally appealing to the members to be tested as donors. There were appeals from the Bima on a weekly basis and recruiting tables set up for our volunteers at public events. The Caring Community had postings in the weekly electronic Bulletin, and the Social Action Network reached out to other synagogues on our behalf. Updates were regularly posted in the monthly print Bulletin as well as in the Shabbat handout, and clergy sent out various appeals on their social networks.
In addition, senior staff Kelly Goldberg kindly volunteered to be an active member on Team Gary, and Brian Kunz, a congregant who donated his own kidney to a neighbor, made himself available to talk to anyone having interest in donating to me.
Lastly, there was the constant and continuous show of support, caring, and prayer from the clergy, staff, and congregation that served to sustain us throughout this 8 month ordeal.
The outcome of all this wondrous effort was that an unbelievable 7 donors were accepted as kidney matches for me. I was emotionally in awe of what goodness there can be in people.
The next step was my going through numerous pre-surgery testing to assure that I continued to be a good candidate for a transplant. I am extremely thankful that all went well, and I was given the green light. Then, a new curve appeared in my travels. My internist had been taking me off various allergy medicines and vitamins to see if this might have any effect on my kidney. Lo and behold, my functioning stabilized, returned to my baseline, and off the renal failure level. This really represented a mixed bag. On one hand, it really uplifted me and gave me new hope. On the other side of the issue was this is the optimum time for a kidney transplant and waiting could close the door on that option. We were tormented, confused, and our heads and hearts were spinning. In an effort to get clarification on this issue, I decided to seek physician opinions as to what actions to take, and being prone to analysis paralysis, I decided to stop after 6 recommendation as if that wasn’t a bit of excess. The outcome score was 4 to 2 in support of leaving well enough alone, at least for right now. The coup de grace was that my incredible kidney donor indicated that he/she (anonymous) would hold off until I was ready. That gesture literally took my breath away.
I, now live one day at a time, grateful for each day of health and all the blessings my life provides me. I’m tested monthly and in contact with the kidney transplant team every 3 months. I have the choice of worrying or living life. Being the optimistic Agnostic that I am, I let go to G-d and say, I choose life.
Personal Life-Saving Journeys
BJBE, our synagogue, is sponsoring a learning opportunity on Saturday, September 20 at 7:30pm at BJBE in Deerfield, IL. (Followed by S’lichot service at 8:30pm)
Gary and I have been asked to serve on a panel that has been described as follows:
God-given knowledge, human skill and humanitarian generosity have enabled technologies, such as organ, stem-cell and bone marrow transplant, to save so many lives around the world and right here in our community. As we prepare to enter into the High holidays, our panelists will reflect on their personal life-saving journeys: the struggles and challenges, the beautiful stories of human kindness and the inspiring spiritual insights that have changed their lives.
You are welcome to join us. For more information contact BJBE at 847-940-7579.