Someone suffers, someone wins

Kidney disease has a price. Ask Phillip Cade and Lana Schmidt.

I first met Phil in the fall of 1990. As a student at the University of Washington, he juggled attending classes, raising a young family, and dealing with the rigors of dialysis. He was given a special award, and over the years wrote articles for NN&I on his passion: body building. That's not an easy trail to follow for some one on dialysis, let alone someone with fully functioning kidneys. But Phil worked hard, and sent the message to other patients: exercise is important and can make a difference. He wrote a three-part series for NN&I in 2008 of having a kidney transplant.

We lost contact over the years, but I heard from Phil this past December, just two weeks before Christmas. Things were not good. His transplant was not only failing but it was impacting the other organs in his body. The once young, vibrant bodybuilder sounded much older than his 51 years when we talked. He could barely hang on to his job (yet despite all his troubles, he kept working, partly because it helped pay for his costly immunosuppressive drugs). "In four days I am going to find myself facing an eviction notice. My transplant is starting to fail but it appears that my other organs are starting to go with it," Phil wrote. "I have to go back to work but I have no food or money to get what I need for this battle."

Phil wanted to give something in return—talk about the long-term challenges ESRD patients can face. I knew that was worth it when I sent a check to help cover his rent and putting some food on the table.

As of this writing, Phil is facing more challenges—removal of his failing kidney and most likely, an ugly tumor growth close by. He wants to hang on to his job, but right now, the three-hour trek from his apartment in Wilkes-Barre, Pa. to Philadelphia is challenging enough. It's a long way from his college days. I hope he makes it.

Lana Schmidt has understood and dealt with the challenges of kidney disease. She has been an ambassa dor for home dialysis-at the Annual Dialysis Conference meeting in 2014, she dialyzed in a room off the exhibit hall, and took questions from those interested in the process. She was a positive thinker and an advocate for self-care.

But what she wanted desperately was a transplant. She faced challenges-a high antibody count that made a successful transplant risky. She needed an expensive drug to ward off rejection. Her transplant surgeon at the University of Chicago fought for her, but to no avail. And then, the new organ allocation policy took effect. The intent was to do a better job of delivering scarce organs to those who could benefit the most.

A worthy approach but, for Lana at 57, it would put her at the back of the line. "This new system is clearly dis criminating against a certain group;' she said in an August 2015 email to me. "Those of us over 50 have been diligently waiting for a kidney year after year hanging in there... we work our way to the top and boom! we are cut down and drop significantly for a kidney! How heartless!"

But she kept the faith. And then came this note to her supporters on Jan. 30: "Today at 3:00pm I will have a kidney transplant. The kidney has a KDPI (match) of 5, in the top 5% a very good kidney, at the University of Illinois. Many thanks to Illinois Medicaid; we are able to use a special drug, Solaris, to wipe out antibodies to make the transplant successful. I'm looking forward to a new life! Please pray for me as I cross the finish line.”

At press time, the kidney was doing well. "The obstacle was securing the $110,000 to pay for the drug so I could have a successful transplant." Schmidt wrote to me.

"After trying unsuccessfully to raise the funds I then went to my Congressman's office, state legis lature, and the Governors office. Medicaid finally agreed to cover the funding of the drug so I could go ahead with a transplant. I am two weeks post transplant and doing great. All is working well." Kidney disease has a price. Phil Cade is struggling to pay that right now. Lana, after many years of hope, is starting to feel like a better life is ahead. Keep them both in your hearts for a positive journey forward.