From my wife, Elizabeth de Forest:
“Eighteen years ago, Michael was dying of kidney failure.Through the anonymous generosity of a grieving family, he received the kidneyof their teenage son, who had died suddenly. During the previous six months that Michael had been on dialysis, I silently felt that he was a “dead man walking.” It was one of the scariest times of my life. I am forever grateful for the gift that family gave us.
Three years ago, Michael’s kidney began to fail. In the eighteen years since his transplant, wonderful, mundane and sad events occurred. Most importantly, Michael and I were blessed with two amazing sons: Asher (14) and Jonah (12). They are creative, funny, smart and articulate in their own unique ways. We can’t imagine our life without our whacky children.
So here we are in August of 2013, with Asher starting high school and Jonah entering middle school. Michael and I just marked our twenty-third anniversary. My hope for our family is that a living donor contributes a kidney to Michael rather than another family experiencing the tragedy of losing a loved one.
From my sister, Beth:
“Without a donated kidney and pancreas, my brother Michael would have died 18 years ago. Without a donated kidney, Michael wouldn’t have taught US history, composition,literature and film studies to thousands of students at the University of Washington, Bothell, and helped them become more critical and independent thinkers. Without a donated kidney, Michael would not have written innovative books and articles about gender and politics, political organizing, and teaching effectively. Without a donated kidney, Michael’s profound journey with his devoted wife and life-partner Elizabeth de Forest would have ended, and the one with his remarkable boys, my nephews, would have never begun. My brother and I are both battling autoimmune diseases of our own and unable to donate to Michael. But we know that healthy adults can live normal lives with only one kidney, and that organ donors live just as long as people with both kidneys (JAMA, March 2010). We are hoping to find someone willing to take the extraordinarily generous step of donating their kidney so that Michael can continue to be the most wonderful dad, husband, teacher, historian - and brother - he’s managed to be all these years, in spite of his medical challenges.”
From my brother, Robert:
“Three years ago Michael’s transplanted kidney began tofail. While waiting on the transplant list for over a year and a half, he has been able to maintain his health temporarily through an extensive regime of home hemodialysis four hours per day, five days per week. But dialysis has been a difficult business: Michael’s fistulas (the expanded vein created for dialysis access) have gotten clogged or failed; infections have occurred; minerals and electrolytes have at times fallen dangerously out of balance, and he’s had painful cramping. His current fistula is in his left arm; once it fails, the only sites available will be in his(dominant) right arm, and then he will need a chest catheter. And because of the time demands of homedialysis and attendant clinic and doctor’s appointments, he is only able to teach a half-time schedule.
His medical challenges will only increase when his kidney shuts down completely, which may happen at anytime. As his health complications increase, his ability to maintain even a somewhat normal life will belost. It’s a life worth maintaining—besides being a great parent, husband and teacher, he is also an active member of his temple (Temple B’nai Torah), a musician, a songwriter, a film buff, a political junkie, a believer in social equality and environmental protection, a cook and all-around foodie, and like me, a rabid Boston Red Sox fan.
Making this kind of sacrifice for another is extraordinary act of kindness and generosity. It is nothing short of the gift of life. A living kidney donation does a number of important things besides shortening the time to Michael’s transplant. Living-donor kidneys have a better chance of initial success, last longer on average, allows for careful planning for support when the surgery occurs, and can decrease recovery time compared to cadaver kidneys. Also, very importantly,every living-donor kidney transplant will mean a shorter wait time for everyone else on the list. To learn more about the process of becoming a living kidney donor, please visit: If you’d like to support Michael in this effort, please help by getting the word out about his circumstances and referring others to his CaringBridge page which can beaccessed at http://www.caringbridge.org/visit/michaelgoldberg. Your thoughts, prayers and well wishes are sincerely appreciated.”
So, that’s what those near-and-dears have to say on my behalf. A few things I’d like to add:
For those requiring it and are interested, a quick overview of my biographical information can be found on my University of Washington, Bothell faculty website:
Also, I wanted to say a bit more about the drawbacks of home dialysis. Yes, the health outcomes are MUCH better than three-times-a-week dialysis done in dialysis centers. However, it takes up a lot of time—about five hours a day, five days a week. With a 12- and 14-year-old, this means missing out on a fair amount of family time. True, the boys and I are steadily moving through the entire "Buffy the Vampire" series (thank you, Netflix), but the situation does limit our options. (And about 100 minutes of that time each day is either me alone or with Elizabeth only. Travel is also a challenge, with trips to dialysis centers a vital part of any itinerary (unless, of course, we choose to lug a 100-pound box containing my machine, numerous boxes and suitcases containing supplies). Both are doable,but neither are much fun.
My wife, Elizabeth, plays the role of a dialysis tech. She received her training from the Northwest Kidney Center (a great non-profit organization) along with me, and is responsible for getting me on and taking me off the machine. Although my respect, love and gratitude for her has somehow gone beyond the 100% level,and she has borne these new challenges with remarkable fortitude and good humor, poking her husband with needles 2-5 times daily, picking off scabs to access said needles, patching up the holes from the needles, and helping to problem-solve the various alarms, leaks, blood spurts and sundry occurrences is not as fun as it sounds. In fact, it can be very emotionally taxing at times even for a couple who have been paying the emotional health tax for many years. Still, we bear up and do OK. But the sooner I receive a transplant, the better it will be for all.
When this will occur for anyone awaiting a transplant is difficult to say, because there are numerous factors(biological suitability, blood type, time on the list, age and health of therecipient, etc.) that determine who gets that call. And because the number of people needing kidneys grows daily and the number of “cadaver donors” has not (for positive reasons—greater auto safety, more use of bike and motorcycle helmets, etc.),the waiting time continues to get longer
The one bit of good news about the list is that more people are choosing to donate a kidney while they are alive. This spring, I was very fortunate to have a friend offer to donate her kidney. It was incredibly generous of her, and we both were looking forward to an August transplant, but her workup revealed that she had a condition that made her ineligible as a candidate. (Fortunately,she is in no immediate danger—but it was useful information for her toknow.) I will be forever grateful for her extraordinary act of kindness. A relative has also offered her kidney, but we eventually determined that her current responsibilities would create too much of a challenge. Again, though, we were very moved by her desire to help us.
Direct donors must have a compatibleblood type (in my case, Type A or O), may not be found to have antibodies that would cause rejection in the donor’s body, and must be healthy enough to have the operation. However, Swedish also coordinates“swaps” with other willing donors who do not match their intended recipient, so even people with non-compatible kidneys can become donors. To learn more about the process of becoming a living kidney donor, please visit:
Making this kind of sacrifice for another is extraordinary,especially given the required confluence of generosity, bravery, psychologicaland physical suitability, and timing. If you’d like to support me in this effort, most likely what you will be doing is getting the word out about my CaringBridge page. Because you never know, right? Also, I accept all good thoughts, prayers and wishes from every major and minor religion, and the full range of atheist beliefs as well, and I mean that most sincerely. Finally, I encourage you to become a potential donor at your state DMV if you haven’t already done so, and to let your family know about your choice.
For those who would like to keep up with my story, along with random thoughts related to my life of one of the medically-challenged, please return to this page to read my updates as they appear in the "Journal" section. And thanks for making it this far.
How to Post Questions/How to Get Info on Kidney Donation
Oct 31, 2013 4:44pmThe news story about my family and my adventures in dialysis have started attracting visitors to this site, which is GREAT! If you want to ask a question directly to me, email MichaelsTransplant@comcast.net. If you leave a comment you want answered in the Guestbook, I can answer it in a "Journal Post," but it may not be the best way to communicate. But I'm happy to do it through the Journal section as well. So.....
In answer to Susan Creswell's very important question about how to go about getting tested to be a kidney donor in general, I would suggest contacting the nearest hospital that does living-donor kidney transplant for advice. My understanding is that most of the tests can be done at your local facilities, but that's it's best to get connected with the living-donor unit. The Swedish Hospital living donor unit can be found at:
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