By Way of Introduction:

My dear friends and readers:

My late husband, Jerry, and I were not unlike so many other devoted couples - we were a team in just about everything we did. Together among so many things, we were happy, active, hard-working and resourceful. So you can imagine our frustration when we were suddenly faced with the medical challenge of a lifetime and found little in the way of organized and focused information related to our immediate needs and practically no where to turn for it. Believe me, its not that we didn't try.

Jerry became very ill in January 2005 while were visiting Sydney, Australia.We flew home to Sarasota, Florida as quickly as we could and checked him into a very fine local hospital. He was there for three weeks, during which time his kidney function all but shut down completely.

By February, his renal output had deteriorated to such a point that he needed dialysis just to survive. A "port" was inserted into his neck as a temporary measure so that the dialysis machine could begin work at once. Meanwhile, the standard "shunt" was implanted in his arm for future treatments, but would take some time to heal before it was safe to use.

In March, dialysis began. After each session (there were two per week) I could see that Jerry was growing weaker and weaker. It quickly became painfully obvious that dialysis was not the ultimate solution if there was to be any measure of quality, dignity and length to his life. The complications of treatment, combined with the strict demands of a renal diet, robbed Jerry of even the simplest pleasures most of us take for granted, like taking a grandchild for ice cream.

Dialysis exacts a heavy toll on the body, especially one weakened to begin with. First, cramping set in. Jerry's legs would cramp; then his hands, which would contort themselves into claw-like formations. He could barely move and resting with any degree of comfort was impossible. We knew we needed a more radical solution. With time running out, we began searching for a new kidney. His dialysis regime was now three times a week.

Here is where the real frustration set in. Being longtime Floridians, with many top-rated hospitals, we naturally started searching close to home. At a hospital in Tampa, some 50 miles north of here, we were advised that Jerry's age and the number of candidates ahead of him would drop us so far down the list of hopeful recipients that he would most likely die before his turn came. In Jacksonville, after nearly a week of tests, the venerable Mayo Clinic ruled that Jerry was too much of a risk.

We had better luck in Pennsylvania. Jerry made the wait list for a cadaver kidney at Starzl Transplant Institute at the University of Pittsburgh, his Alma Mater in his hometown. That gave us a measure of hope, but then the excruciating wait began.

What happened next was deeply troubling and is ultimately why I launched this blog. As I said at the top, Jerry and I were nothing if not resourceful, especially when we were frantically exploring treatment options for his desperate medical condition. We talked with local specialists and friends in the know. We consulted magazines and journals and, of course, scoured the Internet. We searched high and low but never came across any information about the Incompatible Kidney Transplant Program at The Johns Hopkins Hospital, in Baltimore. When we did finally find out about this miracle solution that would guarantee a live compatible kidney for Jerry, it was not from a member of the medical establishment. It was strictly by chance. A friend in Sarasota, who happens to know Mayor Michael Bloomberg of New York City(whose charitable foundation happens to give generously to Johns Hopkins) tipped us off. Without this lucky timing and chance connection we might have never have been the wiser.

You may have read about what unfolded next. To make a long story short, last November 14th it took 12 surgeons, six operating rooms and five donors to pull it off but five desperate strangers(Jerry included) received new organs in what has been described as the first-ever quintuple kidney transplant involving paired donations. I was one of the donors, offering one of my healthy kidneys to a 63-year-old woman from Maryland in exchangefor a healthy kidney from a California woman to be implanted in Jerry. All five donors and all five recipients of new kidneys came through the surgery just fine.

The Hopkins program was absolutely the right solution for Jerry. Ultimately, however, the outcome proved to be a classic good news/bad news scenario.The good news is it worked! The bad news, regrettably, is that it was about two years overdue. In the time it took us to find the Hopkins solution, Jerry's renal and cardiac status had deteriorated to such an extent that his weakened heart and compromised circulatory system proved unable to support the proper functioning of the new kidney.

We spent Thanksgiving, his birthday, our anniversary, Christmas, Hanukkah and New Year's in the transplant & intensive care unit of the hospital, where Jerry had already spent 10 weeks post-op. He fought a brave and gallant battle, but the kidney refused to work and Jerry passed away on February 4, 2007.

I still can't get over the lack of awareness about the watershed transplant programs at Johns Hopkins Hospital that possibly could have saved Jerry's life if we had gotten there sooner. It's hard to fathom, living as we do in an age of split-second communication, that there wasn't a central repository of useful information waiting for us the moment crisis arose. Where was that one source where we could learn about all the latest treatment options, compare their efficacy and find out how to take the necessary next steps? When precious organs are failing, time is of the essence! We were flabbergasted that finding something so right took so long and only happened by chance.

Why, we asked ourselves, couldn't we have found this out on our own, long before we did; long before it was too late? Why, we want to know, was the medical establishment seemingly oblivious to this option? Why wasn't this life-saving option laid on the table from the very beginning? Why, we ask, isn't there a single source - a "clearinghouse" if you will, for ordinary people like you and me to obtain this sort of information?

That's why The Kidney Blog. It's my single-minded goal to have information about the full spectrum of options available in one place, so that patients like Jerry have a fighting chance the moment they're diagnosed. More than anything, I want the world to know about the Hopkins ComprehensiveTransplant Center, which, perhaps, could have saved his life if we had made it there sooner. In my opinion, no medical facility in the country is more on the cutting edge with treatments to save renal-compromised patients. At the same time, I want to help others locate their own miracle solutions, no matter where they're located. I want this to be the clearinghouse for information that Jerry and I desperately hoped to find, but couldn't.

I want your help. If you've read this far, chances are you're seeking information or have useful experiences to share. Either way, you're a valuable resource. Please don't be shy. Let me know what you know or what you need. With more people sharing, organizing and cataloging what we know, we can prevent what happened to Jerry from happening to you or your loved ones. As far as I'm concerned, my wonderful husband died from organ failure secondary to information breakdown. Organ failure is eminently treatable. I saw it first hand.

Now we need to prevent information failure. Blog with me for a cure.

Yours in good health,
Sandy Loevner