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.