Showing posts with label Dr. Enrico Benedetti. Show all posts
Showing posts with label Dr. Enrico Benedetti. Show all posts

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 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.

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.