Tag Archives: Michelle Minkoff

kidney-transplant

Guild member uses data journalist skills to find donor for kidney transplant

By Michelle Minkoff

Upon learning I needed a second kidney transplant, I did what any good data journalist would do and used my skills to search for a donor.

I used my data, tech and journalistic skills to build a website and send out the call through social media. Forty-eight people stepped up to donate, fewer than 15 of whom were my blood type of O. Some, but not all, of those people proceeded through the various rounds of testing.

More details on this process are covered in a Poynter article: https://www.poynter.org/2016/how-2-journalists-whove-never-met-in-real-life-became-a-kidney-donor-and-recipient/433484/

 

That process led me to another data journalist _ Tiff Fehr, who works for the New York Times. We had never met before the day of the surgery in December 2016, but have several mutual friends in the journalism world. Now, we talk once or twice most weeks.

She wrote a bit about her experience here: (https://www.nytimes.com/2017/01/13/insider/the-robot-that-performed-my-kidney-transplant-declined-to-be-interviewed.html?_r=0)

I had managed kidney disease for the past 15 years, about half my life and chronicled my medical ups and downs on this blog (http://hellomykidney.tumblr.com/), as well as my Facebook page.

I have an autoimmune kidney disease called IgA nephropathy, where my immune system attacks and scars my kidneys over time. I was diagnosed in 2000, and progressed to end-stage renal failure in 2006, when I received a transplant from my aunt, as a living donation. That kidney narrowly escaped from the World Trade Center during the September 11th attacks and then lasted 10 years in my body.

By late 2014, I was getting worse and worse.  I viewed my health like reporting a story, and used my journalistic skills to try to improve my odds. So, when I spent Christmas 2014 in the hospital, I decided it was time to act.

I joined a local personal training studio, and went from never exercising to going three, and eventually four and then five, times a week. I enjoyed the progress of going from overhead pressing 1 pound, to 10 pounds, to 30 pounds. I lost 55 pounds. I met some of my best friends, and found a new outlet to relieve stress and find some mental space.

In a similar vein, I was told I had to cook more from scratch to avoid sodium and other ingredients that could contribute to my decline. Cooking is now a favorite part of my day.

Still, I was very close to dialysis around September 2016, and was weak, dizzy, had trouble concentrating and simply wasn’t strong enough to stand up for long.

I had developed a second autoimmune condition, possibly from the drugs I take to preserve my transplant. This time, my immune system attacks my blood vessels, breaking up red blood cells. The medication I needed, Soliris, has the distinction of being the world’s most expensive drug, at about $28,000 a dose. I have been delighted that our insurance is covering it 100 percent.

This illness postponed the necessary kidney transplant from an October date in 2016 to December, and it finally happened in Chicago at the University of Illinois Hospital and Health Sciences System on Dec, 15, 2016.

And now, I feel back to normal, with a level of enthusiasm and energy I haven’t felt for years. I feel 10 years younger; I hadn’t even realized the full extent to just how much poor kidney function was weighing me down. And I returned to work at the beginning of March.

I’m thankful for the benefits of the AP through all of this, I’ve long said that because of my illness, drugs I take, and procedures I must have, insurance is just as important if not more to me than a salary (but we need both, of course!).  I know other kidney disease patients who have had a much harder time than I, and for that I am grateful.

I also am grateful to work at a union-covered workplace, which I knew before was good, but didn’t appreciate just how valuable it would be to me until now. The Guild, and the benefits it has bargained and negotiated for, have been indispensible. Those benefits have made major contributions to my ability to pursue countless tests and treatments, which have truly saved my life. I actually worry more about the time, side effects and the outcomes than the financial burden.

But what I’m most appreciative of in a work context, and eager to return to, is a place that I call “my people”. I am so ecstatic that I have been able to take care of my health and know my dream job is waiting for me.