Looking for Some (Kidney) Action in Chicago? Hit The Loop This Week

Blowing Hot Air in the Windy City: At Kidney Action Day 2014.

Last summer, I was invited to be one of the guest speakers at the Kidney Action Day in the Chicago Loop, an event that returns this Wednesday, Aug. 26, from 11 a.m.-3 p.m.

I do a lot of public speaking these days, but that was a particularly memorable experience. Driving into (and trying to park in) the heart of Chicago, squeezing into one of the lime-green event T-shirts (what, you don't have size XX-Jumbo?) and competing with the noise and hubbub of Richard J. Daley Center Plaza to shout out my personal story and stress healthy, kidney-friendly lifestyle choices, I was in a blur of activity. I found myself scanning the crowd searching for anyone who appeared to be listening, but just the thought that I might be reaching one person with my journey was exhilarating.

What I remember most, though, was being slotted between a booming, Chaka Khan-style R&B songstress and a young semi-professional acrobatic team. I felt like the standup comic on the old Ed Sullivan Show! All I needed was a set of plates to spin on sticks and I would have fit right in!

Which I guess is one way of saying there is a lot to see and do during Kidney Action Day, sponsored by the American Kidney Fund (AKF). I even struck up a (one-sided) conversation with Southpaw, the mascot of the Chicago White Sox, which as a lifelong Detroit Tigers fan I found more than a little eerie. ("If I did kidnap him, how could I fit that big head in my trunk? Hmmm...") The action and entertainment draws in the Loop lunchtimers, visitors and passersby, but the health benefits are what makes this special day an afternoon delight.

Meeting the White Sox mascot? I wasn't green with envy, but...

There are free health screenings for kidney ailments and other possible diseases, healthy cooking demonstrations – and samples – by Jewel-Osco and Hyatt, and interactive fitness displays from the David Barton Gym, Chicago Latin Fitness and Zumba With Adelle. And oh, yes, Southpaw will make a return appearance, between 12:30-1:30 p.m.

It's all free (one of my very favorite words) and open to the public. Bring your friends and family if you can. Richard J. Daley Center Plaza is located at 50 West Washington Street in Chicago. For more information, visit the American Kidney Fund website or get in touch with Janis Contreras at jcontreras@kidneyfund.org or (301) 984-5053.

While you're there, look for me. I'll be the one carrying around the stack of plates with sticks to match.

Of Paper Towns, Plastic Tubes and Precious Memories

My mother-in-law is recovering at our home from successful open heart surgery (praise God) to replace her aortic valve. She opted to use the valve of a pig for the procedure, and the surgeon told us afterward that he found her to be unusually thin skinned. 

I'm saving that comedic gold until after she fully recovers.

Meanwhile, our family twins, Emma and Madison, got kind of overlooked in the hubbub of hospital visits, pharmacy consultations and post-op therapy. Their summer schedule would be hectic even without Mom's surgery, and I knew I hadn't spent anywhere close to enough time with those two knuckleheads. I missed them dearly. So this week I suggested a movie night.

I picked them up from Vacation Bible School, took them out for a bite at Steak 'n Shake (their fave) and went to a 10 p.m. screening of the coming-of-age teen film Paper Towns. (Note to self: Never let the girls have total voting power over movie selection.)

 This is what happens when you go to the restroom and leave your cell phone on the table. Emma is on the left.

Oh, we had a time! Teasing, laughing – Madison, the fashionista, couldn't stop commenting about the caterpillar thickness of leading lady Cara Delevingne's eyebrows on the giant screen – talking about teachers and boys, sharing deep darkers.

I must admit, I even learned something: the title of the film refers to a trick sometimes used by cartographers to guard against copyright infringement. Map makers would stick the names of imaginary locations – "paper towns" – at strategic places; if they saw the same names on competitors' maps, they knew they'd been ripped off. See, even in the midst of a mediocre movie knowledge can be enhanced!

I am so proud of the young women Maddie and Em are becoming, yet they never fail to bring out the goofy kid in me. They're 15 now; almost impossible to fathom I've known them since they were seven.

The evening got me to reminiscing about one of my most memorable experiences with them – which, it follows, became one of my favorite and most talked-about blog stories. 

So in honor of a night to remember and Throwback Thursday, I'm reprinting the post here from March 27, 2011, during the depths of my time on Peritoneal Dialysis and, although I had no idea at the time, eight months before the kidney transplant that would save my life. I called the entry: 

Jimmy Springs a Leak

Why they waited until the day of their mutual birthdays to decide they had to buy presents for each other, I'll never understand. But the twins, Madison and Emma, pleaded with me to drive them to the mall on a recent Friday after school. Happily, in January I bought a 2011 black Chevy Camaro (feel free to oooh and aaah below) because I decided to fully enjoy my only midlife crisis, so I'm pretty excited to drive anybody anywhere these days.

The girls love to shriek and cavort from its back seat over the sheer power of the Camaro's mighty V6 engine – which, come to think of it, may have been the reason they waited until they were sure I would be the one to ferry them in my "rocket car," as they call it. They have even bestowed it with a nickname: 'Black Betty." I'm thinking seriously of getting a vanity license plate for it this summer that will simply read, "BAMALAM." Those who get it will get it.

Happy Black Man With Snappy Black Car  

Anyway, we're in Decatur motoring down Martin Luther King Boulevard en route to the mall (why do bad things always seem to happen on MLK?) when I decide to call The Wife on my Droid and let her know where I'm headed.

"Gadzooks!" (or something like that) I think to myself. "My phone is wet! How can that be?"

Then, in fast order, I realize the right side of my jeans, my leather jacket and, yes, my underwear are soaking through, too. I pull back my jacket and unleash a spout of liquid shooting straight up into the air – all over the interior of my brand-new beautiful car. Worse, that liquid was quickly identified as warm body juice; the joint where my catheter connects to its external tubing had cracked, and the dialysis fluid that should have been circulating around my peritoneal cavity was suddenly circulating around my Camaro.

As the girls squealed and pointed, I grabbed the leak with one hand and steered the car into a church lot, no easy feat when you're driving a stick shift. I put the rocket car in park, leaped from the vehicle and attempted to cap my gusher. The twins, trying to be extremely helpful, grabbed everything they could find to stuff the leak: used paper tissues on the floorboard, a dirty rag on the backseat. I think I even remember seeing an old PayDay wrapper in all the confusion.

Praise God we were less than a mile from my DaVita dialysis clinic. Doubled over like a gunshot victim in a TV show and working my car's clutch with whichever foot was closest, we sputtered into the DaVita parking lot. It was nearly 5 o'clock on a Friday, but I prayed someone would still be there who could help.

Prayer answered. There has been considerable flux and turnover among the Peritoneal Dialysis nurses in Decatur, and Karey was virtually a PD rookie, but she happily agreed to give my catheter repair a try. While she called Champaign for advice and inspiration, I waited anxiously. When you have a manmade hole in your body with a tube hanging out of it, you are repeatedly warned that infection is a constant danger.

Peritonitis. Can be fatal if unchecked, you're cautioned. And we've just slapped every filthy thing we could find on top of it to stem the tide. We did everything short of blow on the tube to hold the water back! If the catheter gets infected, or needs to be removed, my days on PD could be over.

Emma and Madison, for their part, were wonderful, supportive and encouraging. It took nearly an hour for the emergency patching to be completed, and the girls busied themselves by watching TV in the clinic lobby, talking up patients coming in for their treatments, and taking a semi-guided tour of the facility. (That is, peeking in the open doors.)

Madison and Emma, Acting a Fool at the DaVita Dialysis Clinic   

"Jim," Madison enthused, "this is the best birthday ever!"

I'm sure Maddie doesn't know the meaning of hyperbole yet, but for some reason I had a hard time believing that.

Finally the leak was sealed, temporarily; I had to journey to Champaign the following Monday for the permanent fix. As she was putting on her best finishing touches, Karey asked, "Why didn't you use your clamp?"

"What clamp?"

"Do you have a little white clamp they gave you to tie off the fluid line in case of emergencies?"

Sheepishly, I reached into my jeans pocket and pulled out the small pillbox I carry to hold my mealtime medication. I opened it. Yep, there it is, all right. A little white clamp. Good thing I have that, in case of emergencies. Hey, I could use some emergency training!

As we walked back to the car, I heard a small, tentative voice behind me.

"Jim," Emma asked, "can we still go to the mall?"

What could I say? They had done so well, been so helpful, reassuring and patient. Off we went to the mall.

"But remember, ladies, my underwear is still soaking wet!" I announced. "So please shop as quickly as you can!"

Ever try to make two 11-year-old girls shop quickly?

Ever go through a mall walking like John Wayne?

Postscript: The Wife watched me the entire weekend like I was planning an escape, looking for any hint of fever or discomfort, but I came through with flying colors. No peritonitis. No infection. God is good. All the time.

The National Kidney Foundation's New Ad Campaign? It's a Pisser

You've heard the statistics before – maybe even read them here – but they still seem staggering nonetheless:

• According to the National Kidney Foundation (NKF), one out of every three adults in the U.S. today is in danger of developing kidney disease.

• One out of nine Americans – more than 26 million people – already has kidney disease...and most don't even know it.

• African Americans are three times more likely to develop kidney disease than the rest of the population (just my luck), Hispanic Americans 1.5 times more likely.

• Every single day, 12 people die waiting for a kidney transplant.

But here's a stat I've never heard before: the NKF says its research shows that half of all Americans don't know that healthy kidneys are responsible for creating urine.

What? How is that possible? Where did these people think urine comes from, the Pee Fairy?


OK, so maybe everybody isn't a whiz at anatomy. (See what I did there?) The NKF, always eager to educate, has taken a bold – and downright silly – approach to raising public awareness by launching a new promotional campaign this month called, "Everybody Pees."

Well, hopefully everybody, at any rate.

"Urine also happens to hold the key to catching kidney disease," says Kevin Longino, the acting CEO of the NKF. "The message may be unconventional, but it is educational and actionable: get your urine checked for kidney health."

Unconventional? For an established, conservative heath care organization like the National Kidney Foundation, that's your understatement of the month. The takeaway is supposed to be that every time you go to the bathroom to do No. 1 and something comes out, remember to thank your kidneys and make a mental note to keep them healthy. The best kind of peeing you can do, the NKF suggests, is into a cup at your doctor's office – a regularly scheduled urine test to check for kidney damage.

The way they're going about it, however, is as goofy and off the wall as it is eye-catching and oddly charming.

"We are flipping public health education messaging on its head, using humor to get out message across and foregoing scare tactic messaging," Longino declares of his campaign, developed in collaboration with Publicis LifeBrands Medicus. "We're going out on a limb with our core message on urine testing, but we need to take risks if we're going to alter the course of kidney disease in this country."

This is the root of their risk, the Foundation's two-minute animated campaign video. Careful: you may catch yourself singing the theme song in public:

"Pee is a lifesaver (yes, really)!" the video's tagline reads. "You might think urine is gross, funny or just a fact of life, but it's also the best way to find out if your kidneys are working."

Let me tell you from personal experience, you get a lot more casual and less grossed out about urine when you have kidney problems. Mostly, you're just glad to see your pee. 

For more information about the campaign, you can go to www.everybodypees.org.

While I was working on this post, our twin 15-year-old girls wandered past and fell in love with the "Kidneys Are the Coolest" sticker above. They immediately wanted posters, jewelry and T-shirts. (You have them, right, NKF?)

The Foundation may just have a winner here. As far as the twins are concerned, folks, urine.

Chain, Chain, Chain – Chain of Cool

CBS This Morning didn't mention that this is National Kidney Month when they aired this feature on Friday (March 27). But somebody there had to know, right? I mean, could the timing have been any more perfect?

I awakened to the early-morning news show to see this inspiring story of a dozen people in and around San Francisco – all strangers to each other – who helped make medical history at California Pacific Medical Center: They formed the largest "transplant chain" ever on the West Coast, a six-way exchange of kidneys.

For those of you unfamiliar with this still relatively new process, typically a person donates his or her kidney to a stranger who is a blood type and tissue match for the organ. In turn, the recipient has a relative or friend donate a kidney to another stranger in need, and (like the old TV commercial) so on and so on and so on.

There have been such chains assembled on the Left Coast before, of course, but none that ultimately gave life to six renal patients desperately in need of a transplant.

In the CBS This Morning piece, the organ donors and recipients met in person for the first time. Bring your Kleenex.

Zully Broussard, the woman who initiated the donor chain, lost both her husband and a son to cancer. She did not donate her kidney to benefit any particular person. "I just wanted them to have that quality of life," she says. "I want their loved ones to know that they're going to be around."

Oh, heck – why just talk about it? Why don't you watch this report from CBS correspondent Carter Evans for yourself?

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 caregivers...to 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: http://transplantedtobetterhealth.weebly.com/.

*          *          *

"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.

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.

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 www.lanakidneytransplant.com. 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.