Thursday, December 25, 2014

Giving Thanks for (Pre-) Christmas Miracles

The national ESRD (End-Stage Renal Disease) Network Coordinating Center in New York,  for whom I play a very small role as a Patient/Family Engagement committee member, has released a new booklet just in time for Christmas contemplation. It's called Your Life, Your Choice: Stories From Kidney Transplant Patients and Donors.

The introduction says the publication was created "to inspire hope for End-Stage Renal Disease (ESRD) patients, their family members and motivate and empower ESRD patients to explore all treatment modality options, including kidney transplant."

In this time when we gather together to give thanks for our families and celebrate the birth of Jesus Christ, I thought it might be nice to celebrate some rebirths as well. That's what a kidney transplant really is, you know – a rebirth, a rejuvenation, a second chance at life. A second chance to be with your family and give thanks for many more Christmases to come.

Here are just a few real stories from Your Life, Your Choice. (Because reprint rights are so hard to obtain during Christmas week, some names have been changed here. The emotions have been left completely intact.)
*          *          *

"Hello! I'm a three-year kidney transplant recipient and am feeling just wonderful! My name is Carole and I live near Harrisburg, Pa. I had reflux disease at birth culminating in ESRD when I was in my 60s.

"I remember very clearly when I faced the decision of whether to remain on peritoneal home dialysis or receive a kidney transplant. I was on the dialysis machine ten hours every night, seven days a week. It was a difficult time for both my husband and me, but we depended on our faith in God to see us through. I had an awesome personal relationship with Him, so when transplant was needed I was on solid ground with my faith and trusted in the Lord to help us.

"My energy level is way up and I sleep so well at night. It's great to be able to eat whatever I want with very few restrictions. Today I look in the mirror and my skin tone is back to normal. Wow! It just doesn't get any better than that for me.

"I wrote a memoir about my journey through renal failure and dialysis to a kidney transplant. My story is honestly written (through my darkest days) with my personal thoughts and feelings in journal entries, and it's called Transplanted to Better Health. For more information, please check out my website:
*          *          *
"I retired from the Post Office in 2002. My wife and I planned on traveling, and we took cruises and enjoyed our retirement until I started getting sick. We found out I had high blood pressure. No matter we did, in 2008 my kidneys failed and I had to start dialysis.

"Dialysis was getting on my nerves. I was washed out after treatments; some days I could barely make it to my chair when I got home. Being on dialysis for four hours, three times a week took a lot out of life. We stopped our travel plans. 

"A few months after I started dialysis, the staff asked me if I wanted to be listed for a transplant. I was a little concerned about my age – 77 – but I said yes and did everything they asked. My wife didn't think they would give a kidney to someone my age. The people at the transplant center were wonderful, they treated us like family. The first call didn't work out, but two weeks later I had a second call: a young girl had donated her organs and I was given her kidney.

"At age 77, I feel like I've been born again. It's a new life. My wife says I am happier, too. Now we have time to go out to lunch, shopping and all the things I was too washed out to do when I was on dialysis. We are now looking forward to a European cruise.

"I would recommend a kidney transplant to anybody. It's the only doctor's office that I don't mind going to."
                      – Donnie
*          *          *
"Because of Polycystic Kidney Disease, I had been seeing a nephrologist for 17 years when he told me he was retiring due to ill health. He gave me into the care of one of the young doctors in his practice. When this doctor saw my creatinine level of 4.1 (average range for this kidney function indicator: 0.5-1.2), he handed me a list of vascular surgeons and told me to have a fistula put in ASAP – and, goodbye!

"Needless to say, I was stunned by this news. As my father had, in 1966, been Long Island's first dialysis (PD and HD) patient, I knew exactly what I was in for and decided I didn't want it! I decided to get a second opinion. At my first meeting with this new doctor, I knew he was the right nephrologist for me. He told me i was a perfect candidate for a pre-emptive transplant. He proceeded to manage my medications and diet so I could stay healthy enough to remain off dialysis while I searched for a donor.

"Next I signed with a very well known kidney transplant center in New York City. Even though I brought six altruistic donors to the center, they were all summarily disqualified. When the last donor, a girl of 24, was disqualified on the very day I was expecting to receive my surgery date, I knew that I would never have my transplant at that center.

"That same day, via online research, I contacted a transplant center on Long Island. I made an appointment to meet the transplant surgeon and his team. Immediately, everything and everyone felt 'right.' I learned more in that one meeting than I had in over a year at the other center!

"When all the test results were in, combined with those I had at the other transplant center, the team and I discussed my two donors – the last disqualified donor and my sister. We started with my sister, who I brought in to meet the team. She was tested and found to be a good match except for the fact that she was 35 pounds overweight. Instead of disqualifying her on the spot, as the other center had, the dietician and my transplant coordinator worked with her so that she could lose the extra weight.

Thus, on Feb. 23, 2009, my sister and I entered the hospital together and the transplant was done at 7:30 that morning. I remember joyously hopping up on the operating table, in great anticipation of my operation and with complete confidence in my surgeon. The doctor who invented the laparoscopic kidney removal procedure, using his own new technique, performed my sister's surgery. She has only a small scar to mark the occasion of her donation to me. 

"My care in the hospital was superb. The nurses taught me how to change my bandages, what my medications were for. I left the hospital only 48 hours after my transplant, and have not had one problem since!

"How thankful I am for this transplant, for it gave me a new life! Each morning I wake up so happy, to be able to do whatever I want and to have all the energy I need to do it – something I couldn't say for the first 60 years of my life! I can now eat anything I want and travel wherever I please. My brother, also a transplant recipient, and I attend the Transplant Recipients International Organization meetings each month in order to learn all we can to continue to keep our kidneys healthy.

"Every day I feel so blessed to be alive, energetic and happy! Whenever I speak to someone who is either on dialysis or soon to be, I tell them what a difference my transplant has made in my life. 

"Everyone who is in ESRD has a choice to make for the rest of their life. I tell them to "Choose Life" – choose transplant and LIVE!"
           – Mary

Merry Christmas, everyone. Healthy New Year.

Sunday, December 14, 2014

Here's Some Kidney-Friendly Holiday Gifts – That Don't Involve Surgery

OK, so maybe a major organ may be a bit much for you to contemplate giving this Christmas.

Take your time. Give it more thought. Register as an organ donor, and we'll come around again next December.

In the meantime, if you know someone who's currently on dialysis, our friends at DaVita – the company that holds a soft spot in my heart (actually, a bit lower) because they were my dialysis provider and allowed me to write for them on their "Live Now" website, has created a Christmas list of thoughtful and appropriate presents for dialysis patients.

(If you're unfamiliar with my personal history of kidney disease, dialysis and transplantation, you may find this "Live Now" post of interest.)

Conversely, if you're the one on dialysis, you may wish to review this list, check it twice, then spend the next few days dropping broad, shameless hints about what you'd like to see under the tree.

Rather than copy the list here, allow me to direct you to DaVita's Gift-Giving Guide for Dialysis Patients.

Happy shopping. Merry Christmas. The joy of good health to you.

Click HERE to see the guide.

Wednesday, December 10, 2014

Give the Gift of a Kidney This Holiday Season

Hey, 'tis the season of giving, right? And what better gift could one give to anybody than a better quality of life?

Or for that matter, life itself?

This could be an appeal to you, Dear Reader, to become an organ donor. But knowing you I'm sure you've done that already.

Instead, you may remember earlier this year I introduced you here to my dear friend Lana Schmidt, one of America's great kidney crusaders and a woman badly in need of a kidney herself. (Look up "Lana Needs Your Love...and a Little Bit of Your Money" from May 25 on this blog.)

In the 12 years since a rare disease called Goodpasture's syndrome robbed her of her kidney function, Lana has been on every form of dialysis known to man. And as anyone who's been through it will tell you, getting dialysis three or more times a week, every week, can exact a tremendous toll on one's body.
Lana Schmidt, on a Kidney Crusade.

Lana is prepared, mentally and emotionally, for the kidney transplant that will dramatically improve her day-to-day living. Physically? That's the catch. She has undergone so many blood transfusions over the years that the antibodies in her system likely will reject any foreign visitor like a healthy new kidney.

The good news: there is a surgeon at the University of Illinois Chicago, Dr. Enrico Benedetti, who is willing to perform Lana's transplant with the aid of a drug called Soliris. The drug, which will block the antibodies and should allow her body to accept the kidney, has been used successfully on highly sensitized transplant candidates in clinical trials. It's estimated that one out of every three dialysis patients are similarly sensitized to transplants and could benefit greatly from this drug.

The bad, really bad, disheartening news: It will cost approximately (deep breath here) $110,000 to administer the series of Soliris treatments Lana needs prior to her transplant, and Medicare won't cover the cost because it and the FDA have approved the drug only to treat rare blood and kidney diseases. Gack.

She has appealed to her congressman and other governmental officials – no help – and pleaded with the maker of Soliris, Alexion Pharmaceuticals, who says its hands are tied. They claim they can't give free patient support with their drug for uses other than those approved by the FDA. It's a kidney Catch-.22.

Now, this is one resourceful lady. It was Lana Schmidt who had the genius moment to reach out to the nursing program at her local college and solicit students to assist her with her home dialysis treatments, giving them hands-on experience while making her daily burden easier. But Lana has run out of bright ideas for this challenge.

Now she feels she has no other option than to raise the money herself, or give up any hope of a lifesaving transplant.

Lana says she needs to set up 501c(3) tax-exempt status to collect the funds, but even that process costs about $400 she doesn't have. (Being sick for a dozen years ain't cheap, folks.) If she can't find the money to file the paperwork herself, she's hoping that an existing nonprofit group – maybe one with pro-kidney leanings – might see fit to take on her short-term cause under its umbrella.

She has even developed a text-message marketing campaign she calls "Tag, You're It!" to help spread the word about organ donation in general and her plight in particular (I told you she was resourceful). She hopes it might catch viral fire in the same way The Ice Bucket Challenge became a worldwide phenomenon earlier this year for ALS.

What she needs now, Lana figures, is to attract the interest of someone like Illinois Secretary of State Jesse White, a longtime advocate and spokesman for organ donation, or an organization such as the National Kidney Foundation of Illinois or Gift of Hope to partner with her in the effort. Whaddaya think? Anybody out there know somebody who knows somebody who might get involved?

Look at it this way: If Lana could get 10,000 people to donate $11 each, she could reach her goal. It's not impossible, or insurmountable. Even raising the 400 bucks to file the 501c(3) would be a great help.

For more information about Lana, or to make a donation, visit her website at She's an amazing lady, and she can use our help.

And While We're Thinking About Others: When you hit your knees tonight, I'd like to ask you to ask God to bless two other good people as well.

One is my dear friend Dave, whom I've never met. He's the cousin of one of my former editors, he lives in Idaho and we are brothers through bad kidneys who "met" by this blog.

He's been on in-center dialysis many years, and last week the technicians told him they could not perform his regular treatment: his veins have built up so much scar tissue from frequent injections that they could not gain access.

If you want to terrify someone who needs dialysis three times a week in order to live, that could do it.

Ultimately, a doctor performed an angioplasty on two spots in his shoulder and ordered special balloons that he'll place into Dave's veins in an attempt to open them up. If that fails, they may have to insert a stint. Either way, it's scary business and something no dialysis patient should have to face on top of all his other challenges. Pray for him, please.

Lisa Goich Andreadis.
Also ask for healing for another wonderful (and very funny) friend, Lisa Goich Andreadis. Lisa, whom I got to know well when we were regulars on the same Detroit radio show some years back, is a former standup comedian who also knows well life's serious side: her next book, "14 Days – A Memoir," the poignant story of the last two weeks Lisa spent with her mother prior to her death, is due out next Christmas, 2015.

Some strange malady has been affecting Lisa for well over a month. She's been sick every day. And on her last frantic trip to the ER for assistance – well, let's just say she encountered a level of cruelty and degradation no sick person ever should have to face from a staff of self-proclaimed medical healers.

I won't go into details here – not my place, not my case – but if she ever writes about it I certainly will reprint it here. For now, please just pray she gets well very soon. The world needs a healthy Lisa.

Monday, August 25, 2014

The Parable of the Party

Bewee, Birthday Girl
After months of preparation and a final 24 hours that felt like my stomach had rented a room in my throat, I pulled off my first surprise birthday party last weekend. My amazing spouse, Bewee (a contraction for "Best Wife Ever;" her parents named her Karen), turns 50 this year, and I felt such a half-century milestone deserved special recognition.

So earlier this summer I arranged a conference call between her mother, who lives about an hour away, and her sister in Nashville. The most important question I had for them was, if I do this, will Karen (a) never speak to me again (b) kick me out of our home or (c) seek to have me killed. Assured that my life was in no eminent danger, I solicited them as co-conspirators for advice on the date, location, guest list and other essential details.

Little yappy dog
Originally my mother-in-law graciously consented to have the affair at their home – which, since it once had been Karen's home, too, seemed fitting in a full-circle kind of way. But the more I thought about it the worse that idea seemed: the house sits in a pleasant but isolated suburb, their little yappy dog, Sophie, would bark herself into a coronary at all the invading strangers, and there is no parking to be had. If I could connive Karen into driving to her parents' home on a Saturday night, the sight of 30 cars wedged up and down the street might just tip her off.

Even though Karen and I live in a resort-style complex, the thought of using the property's clubhouse within walking distance from our front door never occurred to me. Hey, I don't get out of the house much around here! Praise God my frantic, breathless call to the clubhouse manager less than two weeks before the event was met with compassion rather than cackling: in the middle of wedding season, end-of-summer bashes and countless other reasons for the room to be booked, yes, the clubhouse was available for the night of Aug. 23.


Then the real work began. Buying the decorations. Selecting the menu. Defining the guest list. At night, while Bewee was asleep. I would sneak onto her iPad and pore over her Facebook friends and Words With Friends opponents to make sure there were no obvious invitees I was forgetting. I sent out invitations and followup messages via Facebook, text and email so as to leave no paper trail. Some of those who could not attend were encouraged to call in on FaceTime or Skype at a predetermined time to deliver their birthday wishes in person.

(BTW, I had no idea how difficult it is to provide a final head count to the caterer. You know not everybody who RSVPs is going to show up, some people will show up who didn't confirm, some folks are not going to eat at all, and others can eat enough for two or three! I have a whole new respect for party planners!)

Then there was the cake. After being totally shunned by one bakery department I won't bother to mention (although it was located in a county market), God led me across the street to a Schnucks grocery store, a big chain in the Midwest. There I found a young, enthusiastic artist-slash-cake decorator who totally got my sense of humor and made my wild suggestions even better.

I figured the most memorable event of Karen's 50th year – other than the surprise party, of course – was the mishap she suffered last April when she tripped over the hose while pumping gas (don't ask), fell on the concrete and broke her left arm in three places. The accident required a subsequent operation to insert a metal plate and nine screws into her damaged wing.

How about a cake showing her left arm with the stitches? Giving the "thumb's up" sign? Holding balloons? Do you think that's too over the top?
I don't know – what do you think?
The hardest part of all, though, was simply keeping the secret. I value Bewee's opinion so highly that I frequently had to catch myself before asking her a question about the planning. "Hey, honey, how many people do you think – oops! Never mind."

To pull off the ruse, Karen's mother called her several days earlier and said she and Dad wanted to take us to a favorite restaurant, The Beach House, for her birthday. Karen leaped at the invitation. Days later Mom called again to confirm the reservation time – exactly one hour later than the start of the party, to ensure we would leave home on time.

As we're driving out of the complex, I come up with a good cockamamie story. "OH! Drat!" I exclaim. "I'm sorry, honey. I totally forgot. They want me to drop off my key to the fitness center this weekend at the clubhouse because they're changing the locks. It will just take a second." 

Bewee grumbled, but agreed. I must say, the funniest moment of the evening for me was watching my father-in-law and Karen's teenage sister, Emma, scramble over each other to get back inside the clubhouse when they spotted our car approaching.

I ran inside, made sure everyone was prepared, then ran back outside. "Honey, get out of the car for a second, please," I said. "You've got to see this!"

"We're going to be late," she muttered. "Why couldn't you have done this earlier in the day?"

Seconds later, she realized what was going on and responded just the way I had predicted. First shock, then self-consciousness, delight – and a jolt of reality.

"Does this mean," she asked, "we're not going to The Beach House?"

That may have been the only flaw in an otherwise joyous, memorable evening.

*          *          *

Now I told you all that to tell you this.

I was bitterly disappointed not to have a party for my 60th birthday a year ago. I told Karen as much. I realize that logistically, geographically, it would have been a near-impossible task to pull off satisfactorily. But who cares? It was my BIRTHDAY! The sixtieth! And after receiving a successful kidney transplant two years before, effectively cheating misery and death while prolonging my life, I believed something verrrry special was in order.

I held onto that bitterness and disappointment for some time, I'm embarrassed to admit. And maybe a therapist might determine the real reason I wanted to throw a party for Karen was some twisted form of passive-aggressive behavior. Whatever.

Here's what I know for certain: The whole process of arranging her surprise, right down to the tiniest detail, gave me so much more pure joy than I ever expected. I really got into it, and all the stress and clandestine work became labors of love.

I enjoyed planning Bewee's bash far more than I would have reveled in having a party of my own. Who knew? That Jesus guy, He really knew. In Acts 20:35, He tells us that it is more blessed to give than to receive.

In a society seemingly gone mad with receivers, that's a bit of wisdom always worth remembering.

Happy Birthday, Bewee.

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 "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.

*          *          *

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 or call (800) 228-9290.

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

Wednesday, July 23, 2014

Swinging a Gulbis Against Kidney Disease

I never learned to play golf. I think that's a shame now, because as my male friends and I grow grayer the golf course could become a common ground, a place where we all could wear incredibly gaudy clothing and boast about how virile and good looking we used to be.

Besides, they have those cool little motorized carts.

I tried to play a couple of times. Spent so much time slogging through the trees that I contracted poison ivy on both ankles. I felt like the leader of a rescue party for lost balls. I was the Bogeyman. The fairway was a rumor. And don't even talk to me about putting!

If I could play, though, this is definitely an event I'd throw my clubs in the trunk for. Especially since it's for such a great cause.

Next Monday, July 28, my friends at the National Kidney Foundation of Illinois (NKFI) are hosting the 10th annual edition of one of their most successful fundraisers, the Middle Market OpenGolf Tournament. It will be held at the Olympia Fields Country Club south of Chicago, home to the 2003 U.S. Open and future home of the 2015 U.S. Amateur Championship.
LPGA Tour Glamour Girl Natalie Gulbis (Getty Images)

Since the event began in 2005, the tournament has raised more than $3.5 million to benefit the NKFI's crusade for kidney disease prevention and awareness. As you've read here countless times, one out of every nine adults in America is living with some form of kidney disease – and most of them don't know it. The NKFI has been fighting the brave fight to correct that frightening statistic for a half century – in fact, this is the 50th anniversary of their official charter – and they are worthy of support.

Hoping to surpass the $4 million mark in total earnings with this summer's tournament, organizers are pulling out all the stops. Sure, there are trips for two to Pebble Beach and Las Vegas, including lessons at the Butch Harmon School of Golf, but lots of golf tournaments offer prizes.

Ah, but not every tournament offers a special guest like Natalie Gulbis. Or as we like to call her, "all the stops."

Gulbis, an LPGA veteran, is the consensus sex kitten of the women's tour. She was on the second season of Celebrity Apprentice, hosted a talk show on the Golf Channel, produced her own racy calendar and appeared in a Sports Illustrated swimsuit issue wearing nothing but body paint.

On second thought, maybe I'll be attending this tournament with or without clubs.

Proceeds raised from the Middle Market Open will go toward the NKFI's essential kidney disease prevention and education programs like the KidneyMobile®, which conducts free kidney screenings across the state of Illinois. Left untreated, kidney disease can lead to kidney failure and, eventually, to dialysis or a transplant in order to survive.

Every year, kidney disease kills over 90,000 people – more than breast and prostate cancer combined.

Katten Muchin Rosenman LLP and BMO Harris Bank, supporters of the tournament for many years, are the 2014 co-event sponsors.

There's still time to get involved. For more information about the Middle Market Open Golf Tournament, visit or call (312) 321-1500


Saturday, July 5, 2014

It's Like a River

I took advantage of a rare and delightful opportunity this week. As a freelance writer I probably interview well over 100 people a year, but because the assignments come so fast and feverishly I almost never have the chance to meet face to face with the disembodied voices I talk to on the phone.

However, earlier this year I participated in a tremendous project called "30 Stories in 30 Days" through the Illinois-based organization Gift of Hope. Every day in April – national Donate Life Month – Gift of Hope hosts a blog spotlighting one person or family whose life has been forever changed through the miracle of organ donation.

I wrote a half-dozen of the blog entries, and while each story was moving and inspiring in its own right, one really resonated with me. I was assigned to interview a thriving liver transplant recipient from suburban Chicago named Brian Brandt, and we truly seemed to click.
Brian and his daughter, Bernadette. (Gift of Hope)

He was a retired advertising and marketing executive, an industry in which I spent a sliver of my career. He was upbeat, funny and personable, qualities that always make an interviewer's life easier. He knew exactly how blessed he was to be given a second chance at life, as do I. And during his salad days in the ad game, he left the business to spend nearly a decade teaching in the Chicago Public Schools system.

Wow. Hokey mokey. That's a pure act of courage as far as I'm concerned, and one I deeply admire! (You can read Brian's Gift of Hope profile right here.)

So as it happened, I was in Chicago on business this week and my conversation with Brian drifted back to mind. I emailed. He was available, and willing. We agreed to meet for breakfast near his home, in Wilmette, Ill.

What a treat for me to place an actual face with a name and phone call. Brian is a really interesting and passionate fellow, and our encounter went even better than I could have hoped – so much so that we agreed to get together again for dinner, this time with our spouses.

But I have a true fear of driving in Chicago's morning commute. It's like NASCAR, only with pedestrians. Since I never had been to Wilmette before and my GPS said it would take me a half hour from the Loop, I added another 30 minutes to my travel time and left the hotel an hour early.

I made it to our appointed breakfast spot with 15 minutes to spare (after getting lost twice!), and what a relaxing feeling that is. As I leisurely waited for Brian to arrive, I took a few moments to contemplate.

There was a period, when I was much younger, that I didn't value my own time, much less anyone else's. When I was arrogant and self-consumed, I would go so far as to schedule multiple appointments at the same time: I'd make one person extremely happy by being on time, apologize to the second and blow off the rest. Hey, I was worth the wait!

Now, in this phase of my life, my perspective has taken a complete 180. "Better an hour early than a minute late" is the code I live by. I don't mind waiting for others. There isn't an excuse I can think of that justifies wasting someone else's precious time.

I wonder whether my kidney transplant and the remarkable years I've been blessed to enjoy thereafter play any part in my revolutionary thinking. I suspect it does. We're all living on borrowed time, but that fact becomes infinitely more tangible when you've survived organ failure and been able to talk about it on the other side.

Brian knows. For every person who's received a successful transplant, there are so many others for whom the life-saving replacement part arrived too late, or not at all.

I'm old enough that the words of MacDonald Carey's soap-opera admonishment often ring in my brain: "Like sands through the hourglass, so are the days of our lives." My birthday was in mid-June. I yawned and went to the bathroom and it's July already. Tempus is fugiting.

Time doesn't flow at this stage of life. It gushes. I refuse to get caught in the undertow. I plan to savor every nanosecond.

Sunday, May 25, 2014

Lana Needs Your Love...and a Little of Your Money

I wish all of you could know my friend Lana Schmidt. I guarantee you, you would be the better for it.

When her kidneys failed her a dozen years ago, all of the energy from them must have rerouted to her heart, because it is supersized and passionate. Whenever I begin thinking that I'm doing quite a lot to advocate for prevention of kidney disease, the proper care and feeding of dialysis patients and organ donation, I read or hear about something else Lana is up to and put on my humble pants again.

We met years ago on the board of the Indy-based Renal Network, where we both serve on the Learning Action Network for Region 10 (the state of Illinois) as "patient subject matter experts." I'm fairly certain one of us deserves that "expert" tag.

Lana can get a kidney! With your help.
In the 11 years she has been on dialysis thanks to an auto-immune deficiency, Lana has tried basically every form of treatment that exists. She started out, as most patients do, on in-center hemodialysis, then switched to Peritoneal Dialysis (my favored form) for seven years. When her body could no longer tolerate PD, she did her own intensive research and selected home hemodialysis as the best means to keep herself alive. 

Feeling the need to assist others based upon what she encountered, she is the co-leader and driving force of the Kidney Patients Support Group of Quincy, Ill., the "Gem City" of west central Illinois, and its sister city across the Mississippi, Hannibal, Mo. She and her writing partner, Patty Purcell, are regular columnist-contributors to the worldwide medical magazine Nephrology News.

Lana sits on the national board of directors for the American Association of Kidney Patients (AAKP). She has traveled to Capitol Hill to raise awareness of renal disease among key policymakers in Congress. Taking advantage of a state-funded home service program, she has partnered with a local college in her area to have nursing students come to her house and assist in connecting her to her NxStage System One hemodialysis machine, easing the daily setup burden for her while providing invaluable hands-on experience for the students.

A one-woman PR agency, she speaks at conferences around the country and last March during National Kidney Awareness Month managed to land two radio interviews, three newspaper articles – including a front-page feature – and a TV station segment in her town revolving around her fight against renal disease. (You can read the text of the TV story here; you can listen to one of the radio interviews here.) She even gave out kidney awareness information alongside her treats to kids in Quincy last Halloween!

Lana Schmidt is a warm, funny and devoted woman, a true believer. And now she needs our help.

Living a relatively healthy life more than a decade after diagnosis, Lana was a dialysis lifer – or so I assumed. I've met many people in the kidney community who are perfectly content to remain on dialysis with no plans whatsoever to seek a kidney transplant. The devil you know, I suppose. But I was very wrong: She is very excited to have a transplant...but there are complications.

After undergoing more than 20 transfusions over the years, Lana has built up so many antibodies in her blood that the chances of finding a perfect kidney match are practically nil. However, she has a found a surgeon, Dr. Enrico Benedetti, chairman of the department of surgery at the University of Illinois Chicago, who plans to administer a drug called Solaris to block the antibodies at the time of transplant so her body won't automatically reject the organ.

This approach has been used successfully with patients receiving a kidney from a live donor. But Lana will be the first person to try the procedure with a deceased donor kidney. And that's the rub.

Because it's an experimental technique, the hospital wants Lana nearby following the transplant so they can monitor her closely. Since Quincy is 300 miles from Chicago, she will be required to stay at the University of Illinois Guest House in Chicago for at least two months post-surgery, and insurance won't cover her stay. The out-of-pocket costs for her transplant will be at least $3,000, and she needs to raise those funds herself.

"Mostly, I am asking for prayers through this journey and that everything works out," she wrote me. "But if you are able to financially support me by donating to help offset those costs, that would be very much appreciated. 

"Please forward this to others who may be interested in supporting me in this kidney transplant process."

Well, that's exactly what I'm doing, Lana!

Folks, $3,000 is such a relatively small amount to raise, and if everyone reading this gave just ten bucks we could cover her expenses in no time.

Believe me, it's money well spent. I know as well as anybody how dramatically one's life can change with a successful kidney transplant. And if anyone can pay that blessing forward to benefit others, it's Lana Schmidt. 

If you're willing to help, click here to make a donation through PayPal. (Just substitute your email address for mine.) Or, send your checks directly to:

Lana Schmidt
1636 N703rd Lane
Liberty, IL, 62347

Then, immediately after you donate, please feel very good about yourself. 

And thanks.

Friday, March 28, 2014

There's No Place Like Home (Dialysis)

I'm in Oak Brook, Ill., tonight, attending a public seminar sponsored by The Renal Network called "On the Road to Home: Home Dialysis Treatment Options." The lime green ribbon attached to my name tag reads "Home Team," which either means that my own home dialysis story is well known since I'm a representative of the Renal Network's Network 10, or that I'm expected to clean up after everyone leaves the Drury Lane banquet room.

The annual event, which coincides with National Kidney Month and includes a free meal, was well attended (Duh!) by dialysis patients, caregivers, medical and equipment representatives and those who simply desired more information about their options after the dreaded diagnosis of kidney failure has been delivered.

The Network offered five key questions a renal patient should ask her or his physician when the subject of dialysis finally arrives:

• What dialysis therapy may offer me the best chance of living a normal life?

• What dialysis treatment would allow me the best chance of survival?

• What treatment would allow me to have better nutritional status?

• What dialysis treatment option would YOU choose if you were faced with kidney disease?

David Rush, aka Young Bo$$, a true crowd pleaser
• How can I learn more about home dialysis?

One great way to learn more is simply to attend sessions like these. The evening's featured speaker was my man David Rush, aka Young Bo$$, a charismatic, very gregarious hip-hop star whose career literally was rescued by home hemodialysis.

Rush encouraged everyone in the quiet, attentive crowd to get on their feet and whoop and holler like Justin Bieber fanatics so he could get a great selfie shot for his Instagram account. But he's deserving of a JK blog post of his very own, and I will devote major space to his remarkable story in the very near future. Promise.

The night featured other first-person testimonials from dialysis patients who wanted to share how much home treatments – be it be traditional or short Home Hemodialysis or Peritoneal Dialysis (PD), my former godsend of choice – resurrected their lives.

One, Cary Bolton, an O'Hare Airport employee who says conventional in-clinic dialysis left him so drained that he would fall asleep at stoplights on the way to work, claims that after he switched to PD he was part of "the H Factor: I'm healthier, I'm happier and I'm a home patient."

Also in attendance was my inspiring fellow Renal Network representative Lana Schmidt, who has done such an effective job of spreading the good news about home hemo in southern Illinois that her story was featured on radio, a newspaper feature and in a TV news segment around her home. You can read the text of her TV debut here.

Sadly, though, this was my first major kidney-related event without my friend Richard Berkowitz, the irascible, devoted champion of the home dialysis movement who died unexpectedly in January. (You can read my JK blog post about him right here.)

Even Young Bo$$ acknowledged his absence, having met Berkowitz at a previous conference. "That's somethin' about Rich, huh?" he asked. I had to agree.

Rich is no longer here, but I felt his presence tonight. I think he'll inhabit every room where home dialysis therapies is the subject of choice for many years to come. I fully expected to see him when I entered the banquet hall, then had to remind myself that I wouldn't.

What an incredible impact he made. Guess home is where his heart was.

Thursday, March 20, 2014

Oh, Tie a Bright Green Ribbon/'Round Your Old Kid-neeeey

If you're reading this blog, I'll betcha a dollar to a doughnut (better yet, a celery stalk – doughnuts are dangerous to diabetics and many kidney patients) you already know that March is National Kidney Month.

The official NxStage Green Ribbon
What you probably don't know – because this is the first time it's ever occurred – is that today, March 20, is also National Home Hemodialysis Day. Whoopee!

There are no parades planned for my community (I checked), but it's a day of celebration for many of the 430,000 Americans who are on dialysis nevertheless.

One could easily dismiss this as a slick marketing ploy by NxStage, the Massachusetts-based company that, from what I understand, makes a pretty mean home hemo machine, the NxStage System One.

(I did not opt for hemodialysis, where your blood essentially is sucked out of your body, cleaned and scrubbed, then put back in, when my time came to choose a dialysis option. Even though I've been a post-transplant diabetic for more than two years, I am just now getting on speaking terms with the idea of sticking myself with needles every day.)

However, a lot of dialysis patients I've heard talk about home hemo rave about the treatment. It allows them much greater flexibility and self-determination in how they manage their renal condition, as well as such therapeutic benefits as improved energy, better appetite and less stress on the heart. You can see a number of testimonials yourself on the NxStage website, in a series of video clips that look suspiciously like they were recorded at the Home Dialyzors United conference I attended last year in Orlando.

(No home hemo for me. No camera time. Rats.)

To commemorate the day, NxStage has made available green ribbons to be worn today by those who support the home dialysis option. Obviously it's too late to get an "official" ribbon from the company now, but I'm sure any green ribbon folded and worn with pride will get the point across. I'll certainly be sporting mine today.

After all, anything that can keep kidney patients from traveling back and forth to a dialysis clinic two to four times a week for hours at a time and allow them to remain in the comfort of their homes instead can only be called one thing:

A blessing.

Sunday, February 23, 2014

The Game of Life...It's a $#@!*%

How long do you expect to live?

Is it something you've even thought about? I assume you may have pondered the question a time or two, but I don't know. Hopefully you haven't obsessed over it.

After all, life's too short.

As for me, I've contemplated the matter quite often ever since I was very young – especially once I realized that, as a child of the 1950s, it was entirely possible I could live to see the dawn of the 21st century.

("Two-thousand-zero-zero, party's over – Oops! Out of time....")
The late, great, Rev. Angelo Henderson

I'm a Christian, so I truly believe my life is entirely in God's hands anyway. But you can't help but wonder every now and then, can you?

When I was diagnosed with kidney failure (or the more sinister-sounding "end-stage renal disease") in 2008, subsequently went on dialysis and eventually received a 2011 transplant, I figured my final calculations needed to shrink by several years. I mean, my "invincible" body had shown its mortality, and now somebody else's strange spare part was wedged inside me, helping me live.

I have to take pills every day for the rest of my life to keep my natural immune system weak enough so my imported kidney won't stage a revolt, get rejected and screw up the rest of my body. I have been compromised in any number of ways.

Like my Mama used to say, "Once they cut you open and let the air get inside you, you're never the same." As far as longevity goes, this can't be a good thing.

But for now, I'm 60 (I've ever admitted to that until now, and I may never write it again), feel like 30, act like 20 (or so my wife insists) and relish my health and every sunrise. Life is sweet.

Every so often, though, an event takes place that smacks you between the eyes and makes you start recalculating your "out" number all over again.

Usually it's the death of someone very dear to your heart.

Recently, as I wrote in my post "Requiem for a Heavy Hitter," reality came biting with the passing of Rich Berkowitz, founder and president of the national organization Home Dialyzors United and a man dedicated to a noble cause: giving all dialysis patients a choice, and a voice. Rich was an acquired taste, but I slowly came to develop an appetite for his blunt, effective manner and discovered the warm heart beneath.

Rich died suddenly, and unexpectedly, but to be honest he wasn't in the best of shape. He had been on various forms of dialysis himself for many, many years, and over time the procedure exacts a heavy toll on your body. On the heels of losing Rich, however, has come a death that rocked me to my emotional core – and apparently, did the same to an entire city.

I've known Angelo B. Henderson since we worked together on the same newspaper staff in Detroit back in the 1980s. He went on to receive the Pulitzer Prize, journalism's version of the Oscars, at the Wall Street Journal. He hosted a weekday radio program on Detroit's WCHB radio, a station I worked for a generation earlier. His afternoon show, "Your Voice," became required daily listening for thousands of Detroiters and, some would contend, played a key role in helping to overthrow a corrupt City Hall administration.
Angelo with his lovely and talented wife, Felecia.

In other words, we were given the same raw materials, but Angelo used his to much greater advantage. In fact, he upped the ante by becoming a minister, a force in the National Association of Black Journalists (NABJ) and a passionate community organizer.

Coming out of the Jay-Z concert at the Palace of Auburn Hills recently, filled with the joy of music, Angelo slipped on a patch of ice and jacked up his knee. Basically incapacitated, he was recuperating at home while others willingly assumed his public duties.

Bored of just sitting, I'm sure – the words "Angelo Henderson" and "inactivity" never found the same sentence – he reached out to me to help him play one of our mutual guilty pleasures, the online version of Family Feud. If he couldn't amass all 200 points in the "Big Money Round" by himself, he would ask me to play the other side of the board, and vice versa. We were getting pretty good at it, too.

One day we're channeling Steve Harvey. Overnight, Angelo experienced complications. The next day, he was gone.

Gone! Just like that. Gone. At the extremely tender age of 51.

That's barely more than a half-century. If 50 is the new 30 (and I'm declaring it is), Angelo was barely into middle age.


For the better part of a week, the city of Detroit was in stunned emotional gridlock. Tributes and memories gushed forth on social media. The Detroit Police carried out a major drug sweep in his honor. They're laying him to rest Monday (Feb. 24), and I'm betting the homegoing ceremony is going to be a sight to behold.

If Angelo had to leave us, it almost seems fitting he should die during Black History Month, because he stood as a gleaming example to many of what African Americans today can achieve.

Now, don't get me wrong: You'd be hard-pressed to find anybody who rejoices in life as much as I do. I wallow in the wonder of every day, especially after being given a second chance at it through a selfless organ donor. If I could, however, I'd willingly give a few of my years to Angelo. He would have used them well and wisely, I think.

God took Angelo to be by His side, a good and faithful servant. He leaves behind a beautiful wife and partner, Felecia, a gifted journalist in her own right; and a son, Grant, whom he should have been able to see walk proudly down the aisles of graduation and marriage. We are greedy folk: It feels like Angelo deserved his 70s, at least.

My transplant experts tell me that if I take good care of myself, do what they tell me and eat my Wheaties, this rented kidney of mine could last 20 years or more. So, let's say 82. That sounds like a nice round lifespan number. Eighty-two it is.

And in every one of those remaining years, Angelo Henderson never will be far from my thoughts. My hero and everlasting inspiration. Rest well, brother.

Friday, January 24, 2014

Requiem for a Heavy Hitter

One of my last blog postings of 2013 focused on Rich Berkowitz, founder and crusader of the patient advocacy group Home Dialyzors United, and the eye-opening experience I had in Orlando as a guest speaker at his annual convention.

I recently realized that this JK entry was going to include Rich, too. But not like this. Not like this.

Rich Berkowitz, R.I.P.
After complaining the past several months of being rundown and out of sorts – and when wasn't Rich complaining about something, usually the lack of treatment options offered to new dialysis patients, the nephrologist-patient relationship or the failure of U.S. airlines to carry portable dialysis machines free of charge – Richard Berkowitz's never-ending fight on behalf of those with kidney disease ended abruptly this week. I think his big, battered body just gave out.

Rich died unexpectedly – and that is the correct word, "unexpectedly," because it seemed like he could roll on forever through his cussedness and tenacity alone – and it's going to take the renal community quite some time to recover from the shock.

I once told Rich I thought of him as "an anchovy on two legs," an acquired taste if ever there was one. And a salty one, at that. He bestrode his world like an obsessed monk. The first time I met him, at a meeting of The Renal Network patient advisory board to which we both belonged, I absolutely could not stand him. I thought he was loud, aggressive, overbearing, unkempt and a know-it-all. (Other than that....) I remember coming home after that initial encounter and blurting out to my wife, Karen, as I walked through the door, "I've got to tell you about this guy I met at the board meeting today."

For some reason, however, like the cat that always rubs up against the one person in the room who's allergic to it, Rich seemed to take a liking to me. He would seek me out at subsequent renal meetings, sit next to me when he could, and whisper additional background details in my ear about whatever topic was being discussed at that moment.

Slowly, I came to realize that the guy really knew his stuff. While his grasp of Robert's Rules of Order wasn't always the best, it dawned on me that he often interjected his viewpoint not to be rude, but because he frequently did know more than the person speaking and wanted to keep discussions factual and on point. Finesse was not Rich's strong suit.

He lobbied relentlessly on Capitol Hill, re-energizing the Congressional Kidney Caucus and striving to educate members of Congress about home dialysis and the needs and rights of patients. Last year he spearheaded a campaign that convinced the U.S. Department of Transportation to include portable dialysis machines as medical equipment that must be transported free of charge by commercial airlines. He was singleminded in his belief that every dialysis patient was worthy of respect and the right to choose the treatment that allowed him or her the highest quality of life.

I was dumbstruck when Rich invited to fly me to Orlando last October to speak at his annual Home Dialyzors United (HDU) "Meet Up and Conference," giving a presentation from a patient's perspective. I was even more flabbergasted when I arrived there. His "Meet Up" was held at a gorgeous, three-star Florida resort and attracted some of the biggest names in the renal universe, all attending because of the relationships Rich had forged with them.

For my part, everything that could go wrong with my presentation surely did. We discovered at the very last moment that my accompanying slide package wasn't compatible with the resort's projection equipment, and we couldn't transfer the slides onto a flash drive in time. I stood in front of a packed conference room and completely winged it. I was dejected and embarrassed afterwards, but Rich was completely supportive. "You were great!" he enthused. "You had them hanging on your every word!" He did have a softer side, although he tended to hide it well.

The last time I saw Rich Berkowitz was in suburban Chicago last December, when we both attended a wonderful presentation by hip-hop artist David Rush (aka Young Bo$$) sponsored by The Renal Network and NxStage. Rush completed an exhaustive multi-city concert tour with Pitbull despite being on dialysis, and his story was as inspiring as it was entertaining. That was the tale I planned to tell in this space – I'll get to it soon – and of course Rich was a part of the story.

After the event, he collared Rush and called me over to meet him. We asked someone to take a photo of the three of us on my iPhone, and it wasn't until I returned to my hotel that I discovered my phone was missing. I talked to Rich a day or so later, and in his typical fashion he commanded, "You better find that phone! I want that picture!"

Well, I lost my phone, and now we all have lost Rich. I couldn't possibly imagine myself writing this after our first meeting, but I grew to think of Richard Berkowitz as a good man and a good friend, and I hope he felt the same about me. I will truly, truly miss him.