Showing posts with label National Minority Organ Donor Awareness Week. Show all posts
Showing posts with label National Minority Organ Donor Awareness Week. Show all posts

Friday, August 19, 2016

Happy to be a Part of 'the Minority Report'

My friend Mike Freeman, Illinois Secretary of State Jesse White, and Me.
Last week was National Minority Organ Donor Awareness Week. For a minute I felt guilty about not writing this post last week to coincide with the occasion. Then it hit me: every week should by Minority Donor Awareness Week.

According to organdonor.gov, of the more than 101,000 people in America waiting for a kidney transplant right now, more than a third of them are African American. So of course, more than a third of all African Americans are signed up to be organ donors, right?

What do you think?

No, seriously – what do you think?

The need for minority donors in this country – Hispanic, Asian and Pacific Islanders, as well as blacks – is more crucial than ever. That's why I'm so proud of the efforts of Illinois Secretary of State Jesse White and his phenomenal "Life Goes On" initiative to register Illinois residents to become organ and tissue donors after – well, you know.

This week, White's office announced that the state's donor registry hit the astonishing mark of six million registrants. "I'm thrilled to see that Illinoisans continue to show their giving spirit by signing up for this lifesaving program," said White, who became personally immersed in organ donation decades ago when his sister needed a kidney, in a prepared statement.

"Our mission is to sign up everyone who is eligible in order to give others a second chance at life and end the waiting list for the approximately 5,000 people statewide."

Despite those impressive sign-up numbers, every year about 500 people in Illinois die waiting for that perfect matching organ. Many of them are African American. 

So what a great honor it was for me to share a dais with White – the longest-serving  Secretary of State in Illinois history and the first black person to hold the office – last week for a Minority Organ Donor Awareness event at Carle Hospital in Champaign, Ill. 

We were joined by my new friend Dave Freeman, who lives in the same complex as I (our building manager introduced us) and is preparing to begin dialysis in hopes of an eventual kidney transplant.

Jesse and Dave were there to plead for the need. I was Exhibit A, the walking, talking success story.

Unlike me, who relishes any opportunity to open my mouth in public, Dave was more than a bit jittery prior to making his remarks. He had included a joke in his short speech and wanted to run it past me:

"When they asked me if I wanted to be an organ and tissue donor, I told them, 'No thank you. I play the trumpet.'"

Crickets. 

"I don't get it," I confessed.

Once he explained it to me – a play on words about musical instruments – I gently suggested he remove the "and tissue" part to put the key words closer together. Dave agreed to try it.

I won't bore you with every word verbatim (much as I'd like to), but this is the bulk of what I said to that hospital audience:

"Ladies and gentlemen, good morning.


"I'm happy and proud to share the podium with our esteemed Secretary of State, who has been such a champion in the field of organ and tissue donation. Thank you, Mr. White, for all you have done and continue to do.

"My name is Jim McFarlin, and I am speaking to you today from beyond the grave.

"Logically, realistically, there is no way I should be standing before you right now. In 2008 I was diagnosed with Stage IV kidney failure, and as many of you may know, the medical types tell you that at Stage V you should be checking your insurance policies and making arrangements.

Talk, talk, talk: Jimbo, the Kidney Crusader
"Now, I'm going to talk about God right here, so if you are not the "religious type" you may wish to tune out for a moment. Because I don't believe you can knowingly come so close to death's door and come away clean and healthy on the other side without having your faith in God renewed.

"I was on dialysis for just over two years – far below the average wait time for a transplant – when a precious little girl, just six years old, collapsed and died on the playground of a brain aneurysm. Her kidney was a perfect match, and in perfect condition. 

"I will forever be grateful to her parents for having the courage and selflessness to think about how their dead child could benefit others at that most devastating time in their lives. My transplant was performed November 18, 2011, and I'm still going strong. Praise God!

"I am Exhibit A for the benefits of organ donation. I am blessed. And I truly believe one of the reasons I'm still around is to encourage and appeal to my brothers and sisters – of all colors – to make the choice to register as an organ and tissue donor.

"High blood pressure and diabetes are two of the leading causes of kidney failure, and you know that black folks lead the league in those statistics. Y'all eating all that pork! 

"But you just know that African Americans are not signing up tp be organ and tissue donors in equal measure. Quite simply, we're not pulling our weight! We're not doing our fair share.

"And while it's true that the races have interchangeable parts, the truth is that tissue matches are just better when transplants occur within ethnic groups – that is, when black patients receive organs from black donors, Hispanics from Hispanics, and so on.

"For about two years I served as the End Stage Renal Disease Patient Representative for the State of Illinois. And while it was largely a ceremonial position, I tried to use it to best advantage. 

"As I traveled around the state, whenever I could I would drop into a dialysis clinic and ask to speak to the patients. And while I learned a lot from them, the takeaway that struck me hardest was that it seemed no matter where I went, the vast majority of patients were the same color as I am. The need for donors is critical.

"Why don't we donate? One reason, I think, is because we believe in all those myths and old wives' tales that just aren't true. Doctors will not let you die on the operating table so they can harvest your organs...you can still have an open casket funeral...organ donation is not against your religion. There is no legitimate excuse.

"So if you really believe that Black Lives Matter – or Asian Lives, or Hispanic Lives, or every life –  here is a positive, nonviolent, selfless way to prove your commitment. Become an organ and tissue donor. Do the right thing. Donate life. Thank you."

And by the way, Dave's edited joke got a big laugh. A good day all the way around.

Tuesday, August 5, 2014

The Darker the Organ, the Sweeter the News

As I'm certain you must know, we are smack-dab in the middle of National Minority Donor Awareness Week.

Just a minute. If you're part of America's wondrously diverse color wheel and not waiting desperately for an organ transplant in order to survive, or don't have a friend or loved one who is, why would you be aware?

That was the question Dr. Clive Callender may have been pondering in 1991 when he founded the national Minority Organ Tissue Transplant Education Program, more widely (and easily) known as MOTTEP. A professor of surgery at Howard University, Callender also established the Howard University Hospital Transplant Center in D.C., the first minority-operated center in the United States.

Here's the issue: Of the more than 100,000 people currently on the waiting list for a kidney transplant in this country (of course there are other organs, as well as eyes and tissue, but I'm partial to kidneys), at least 64 percent of them are minorities. African Americans, Hispanics, Asians and Pacific Islanders are far more susceptible to high blood pressure and diabetes than any other ethnic groups (don't ask me why), and those are the two leading causes of kidney failure.

Every 10 minutes, another patient is added to that waiting list. Every day, 18 patients die while on that list.

However, though minorities dominate the waiting list – We're No. 1! We're No. 1! –  our rate of organ donation, either as a living donor or after death, has been vastly disproportionate. Maybe we think we'll have a use for them after we're gone, or that Jesus won't want to see us all cut up like that.

The great news is, thanks to groups like MOTTEP and other education and outreach efforts, the number of minority donors has more than doubled over the past 15 years. The sobering news is, there is still so far to go.
Dr. Clive Callander

"When we started this effort, we were told that minorities don't donate organs; we've proven that wrong," Callender said in an interview with organdonor.gov. "Instead, we've learned that by overcoming common misconceptions and creating awareness about organ donation, communities come together and help take care of each other."

A single organ donor can save a dozen lives or more. And because the organ match is likely to be far more compatible with a member of the same ethnic group (again, don't ask me why – what do I look like, a transplant surgeon?), the need for minority donors is critical.

Here's the call to action, what you can do. First and most obvious, sign up to be an organ, eye and tissue donor. It's really simple and only takes a minute: you can find more information here.

Then share the message with your family and friends via email, Facebook, Twitter, Instagram or any other mode of communication you wish. (Share my blog – please!) Hey, you might even want to talk to them! And make sure you let your family know of your desire to be an organ donor, so there can be no doubt going forward.

I'm alive today because of the selfless act of one minority family who improved and extended my life through the gift of a "perfect" kidney. The more organs donated, the more lives saved: simple as that. You have the chance to make a huge difference in so many other lives. It's the next best thing to immortality.

Like Spike Lee would tell you: do the right thing.

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Did you know there was a Hemodialysis University? Boy, their final exams must be rough!

Calling all nephrologists, fellows, dialysis nurses and dialysis technicians: ISDH, the International Society for Hemodialysis, with assistance from Network Strategies and Innovations, Inc. (NSI), is conducting a two-day "Hemodialysis University" program Aug. 15-16 at the Chicago Marriott O'Hare, its first such event in the Midwest since 2012.

The conference, "Critical Solutions for Dialysis Care," features an emphasis on home hemo, with an internationally recognized faculty on hand to conduct the sessions. Group rates are available. For more information or registration, go to ishd.org or call (800) 228-9290.

Wonder what Hemodialysis University's team mascot might be? The Fighting Fistulas?