An acquaintance of mine, a fellow member of the National Association
of Black Journalists Detroit chapter of which I am proud to belong,
contacted me via private online message not long ago.
(I won't mention him by name, so I can talk about him.)
He
began with the obligatory courtesies: "We have met a few times in
Detroit...I'm not sure you remember me but...." Then just about the
moment I mentally connected his name with a face, he smacked me with
an emotional haymaker.
"I have been reading your blog, Just Kidneying,
and it is hitting me right on time: I just found out this week that I
am going to have to go on dialysis and be put on an organ donor list."
Bam.
Pow.
Oh, the pain.
I feel you, brother.
In
that instant, it all came flooding back. The fear. The anger. The disbelief.
The "WHAT THE HELL! HOW CAN THIS BE?" Almost all of Kübler-Ross's five
stages, welling up inside me at the same time. Feelings I thought I had long ago suppressed.
Everything but
acceptance.
"I am
in the middle of having to make the decision about PD (Peritoneal
Dialysis) or Hemo (home or in-center)," he wrote. "I am looking for information,
support, prayers, etc. Any direction you could provide would be greatly
appreciated. Thanks."
The prayers came instantaneously. The advice was dispatched minutes later.
If you have read this space at all in the
past, you know I am a vocal and enthusiastic supporter of PD,
the type of dialysis I opted for and applied to myself every day for
nearly three years. I believe it's less invasive, gentler to your
system, as effective as other dialysis systems and doesn't require you to be on time for in-clinic treatments at least three times every week. (Really, who can do that?)
I passed my insights along to my friend and received a response a few weeks later.
"I am three days away from getting my catheter," he wrote. "Since I first reached out, we decided on PD over hemodialysis."
He listened to me! My wife doesn't even do that!
"I am still not quite sure what to expect, and I wish there was anything, and I mean anything else, I could do not to face this, but I have to go forward. Thanks for your support."
"Have to go forward." I heard that, and I totally get that. I mean, what other choice do you have?
After more than four years with a successful kidney transplant, I often feel far removed from the trenches of the day-to-day renal wars. I recently resigned my position as ESRD (End-Stage Renal Disease) Patient Representative for the State of Illinois and recommended a current dialysis patient, a man I know to be a leader and activist, as my replacement. Kidney patients deserve someone who's on the front lines of their struggle, I figured.
However, the unexpected message from a confused Detroiter in need, who reached out to me for no other reason than that he knew my story, reminded me that I still have value in this area, a role to play as a reference point. I'm no nephrologist or kidney disease researcher, but I have been through the darkness and pain and come out on the other side. I'm reminded of an advertising slogan from many decades past:
"Ask the man who owns one."
Last week I got a call from a dear friend, like me a Detroit expatriate. Doctors have discovered a tumor the size of a football in her midsection. Worse yet, as it grew it apparently pressed against the artery that supplies blood to one of her kidneys, damaging it severely.
After we talked about her condition, she had a battery of questions for me about kidneys and their function.
Who am I, the kidney answer man?
To some people, I guess I am.
Happy to help.
Showing posts with label kidney disease. Show all posts
Showing posts with label kidney disease. Show all posts
Sunday, March 13, 2016
Thursday, September 24, 2015
Seeking a Measure of Katharsis at the Kidney Konvention
For the first time in at least two years, I am attending a convention related to kidneys and renal health. This weekend I'm off to Nashville for the 41st national meeting of the independent advocacy group AAKP, the American Association of Kidney Patients.
In one sense, this is serendipity. My sister-in-law and her husband live in Music City and their youngest daughter, Eleanor, turns six this week. So when I received the invitation to attend this year's AAKP and noticed the dates, my wife, Karen, and I decided to make it a family excursion. While I'm in a crowded, airless hotel ballroom soaking up such sessions as "Summit on Public Policy" and "The Kidney Disease Self-Management Toolbox," Karen will be frolicking with her sister, the birthday niece and two other kids.
(I am certain Eleanor will not miss me. She hasn't spoken to me since she was three. As the only person in her immediate family of a different color, I may come across to her like the Boogeyman.)
In a much larger sense, however, this convention represents a personal renewal and rededication for me.
Over the past several months I feel like I've lost something – call it passion, commitment, enthusiasm, whatever you choose – for the kidney cause.
I am still the ESRD (End-Stage Renal Disease) patient representative for the State of Illinois, and I am still honored to hold the position. But it's a largely ceremonial post, mandated by state charter. The veteran nephrologists (kidney specialists) and nurse managers who dominate the committee generally welcome my comments with all the enthusiasm of a sick patient trying to diagnose his own illness. They would much rather I was seen and not heard. For that matter, I'm not so sure they're that wild about me being seen, either.
I continue to sit on several national and regional renal boards, but I find I'm not as devoted to the affiliations as I once was. Where once I used to build my week's schedule around trips to board meetings and webinar sessions, now it's largely the other way around. If a meeting happens to fall easily within my other responsibilities and I can make it, I'm there. If not....
And even though I hold the titular title of secretary for my local ESRD support group, I cannot tell you the last time I made a meeting. They are always held on the first Tuesday of the month, but it seems lately I've been on the road for business, or tied up with a church commitment, or otherwise engaged. Sometimes, quite honestly, I've just forgotten. That never used to happen.
Do I have a theory as to why my fervor has faded? Have we met? Of course I do!
I really think it has a lot to do with the present condition of my health – which, at the moment, is superb. After a few years on daily dialysis, overcoming the fear and pain of a kidney transplant and a few more years living with the new reality of 30-plus pills a day and constant blood and body monitoring, today I'm doing great.
At my last annual checkup (which once was my monthly checkup), the chief of transplant surgery for Barnes-Jewish Hospital in St. Louis, the site of my operation, used the word "unbelievable" to describe my condition. My standing blood tests have been reduced from bi-monthly to once a month. My creatinine (cree-AT-tin-een) level, an indicator of kidney function that typically falls between 0.6 to 1.3 for normal healthy people, is at 0.9. My beloved little Cheyenne, who moved into my body in 2011 as a long-term tenant, is just showing out.
 |
| At my first AAKP convention, in Little Rock, I met inspirations like Brad Mayfield. |
However, I think with the passage of time, many people get the desire to reach back and lend a helping hand to others who face the same challenges they have overcome. I have encountered so many folks who served to inspire me, like my friend Brad Mayfield whom I met at my first AAKP convention in Little Rock back in 2011. I talked to people who'd been on dialysis 10, 15, 20 years, some who were fearful of receiving a transplant, others whose condition prevented it. I still remember how thrilled I was over the prospect of spending time in Arkansas (I wrote about it here), but the experience ended up being just what I needed, just when I needed it most.
I think I'm ready to jump back into the kidney caravan again, to rededicate myself to the effort. This weekend will be the test. More than 26 million Americans have some form of kidney disease, over 101,000 of them are on the waiting list for a transplant. And while they won't all be at the AAKP convention, if I can make a small difference in one person's experience, if I can be the example or inspiration for anybody, then this weekend in the shadow of Opryland will be well worth the trip. (Eleanor birthday celebration notwithstanding.)
It's a simple shift in perspective: I'm OK, I Want You to be OK, Too.
Thursday, September 3, 2015
PKD Gets Its Own Day...But What It Really Needs Is a Cure
Today (September 3) is Polycystic Kidney Disease (PKD) Awareness Day, a day devoted to raising awareness of the life-threatening inherited disorder. In PKD, clusters of cysts develop inside your body, primarily within your kidneys. The cysts are noncancerous, but the round sacs contain a water-like fluid. As they accumulate more fluid, they can become extremely large.
In the vast majority of cases, the cysts overwhelm the kidneys and lead to kidney failure. There is no treatment. There is no cure.
Even though the genetic condition afflicts thousands in the United States and millions more worldwide, most people have never heard of PKD, much less know its effects. Obviously, #PKDAwarenessDay seeks to change all that.
Indeed, you may know someone who has PKD and not be aware; the disease isn't something its sufferers tend to bring up in friendly conversation. Did you know:
• PKD is the fourth leading cause of kidney failure;
• Parents have a 50-50 chance passing PKD to each of their children (unlike many genetic conditions, it does not skip a generation);
• Polycystic kidneys can grow as large as footballs and weigh up to 30 pounds each;
• PKD affects all races, genders, nationalities and geographic locations equally.
#PKDAwarenessDay is the precursor to the fundraising "Walk for PKD 2015" events staged throughout the country in September. In the markets I know best, the Detroit Walk for PKD takes place Saturday, Sept. 12 at Boulan Park in Troy; the Chicago Walk for PKD happens Sunday, Sept. 20 at Busse Woods Grove 6 in Elk Grove Village.
For more information on participating in the Walk for PKD nearest you, to make a donation, or for all other things Polycystic Kidney, reach out to the Foundation at pkdcure.org.
I wouldn't want a football growing inside of me, would you? We've got to stop this crazy thing.
Here is the PKD Foundation 2015 information video, "Do You Know PKD:"
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.
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:
Then, immediately after you donate, please feel very good about yourself.
And thanks.
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. |
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.
Tuesday, July 16, 2013
'Hot in Cleveland' Is Hot for Donors
Here's a great reason to watch the TV Land sitcom Hot in Cleveland this week, besides the irrepressible Betty White and the extraordinarily fine Valerie Bertinelli, who I had a major crush on when I was a kid and she was on One Day at a Time especially because I knew she grew up in suburban Detroit not far from where I lived and....
Oops. Went off the grid there for a moment. Sorry.
 |
| Malick, Leeves, Bertinelli and White, 'Hot in Cleveland' |
In a first-of-its kind partnership, TV Land and Hot in Cleveland are teaming with the nonprofit organ donation website MatchingDonors.com to raise awareness of the crucial need for organ donors with this week's episode Wednesday (7.17) at 10 p.m. EST. In the storyline, legendary soap opera star Victoria Chase (Wendie Malick, who I had a major crush on...oh, never mind) makes the life-altering decision to donate one of her kidneys to a desperately ill young girl.
You'll laugh, you'll cry, you'll be moved, I suspect.
MatchingDonor.com claims to be the most successful nonprofit agency targeted to "finding living altruistic organ donors for patients needing transplants," receiving more than 1.5 million hits to its website every month.
"We are proud to partner with TV Land," says MatchingDonor founder and CEO Paul Dooley. "Their unselfish efforts in promoting organ donor awareness will directly result in saving lives."
As someone whose life was saved by a successful kidney transplant Nov. 18, 2011, you can bet I'm eager to see this episode. My donated kidney wants to watch, too.
I've been telling her about Valerie and Wendie.
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