Transplant Convergence Continues

The January 2010 transplant continues as three people I have 'met' since beginning to blog on PKD are receiving living donor transplants this month. 

Sean Hoefling (Living with PKD) had his transplant early in January and is doing great and already going back to work. He's had some issues with Potassium levels but that seems to be working out. Diet is way less restrictive than with dialysis, but it is still very important. The thinking is, if it is difficult for the kidney to process or maintain proper levels, then help the kidney out by watching what you eat.

His brother Bruce (pkd sucks) is not having such an easy go. There were unusual complications with blood flow to the kidney which required a second surgery, a longer stay in ICU and now 'sleepy kidney syndrome'. He is producing urine, but they are waiting for the creatinine to start going down. Bruce just doesn't seem to go down the easiest path! Everything, from PKD to dialysis and now to transplant has been extremely difficult. As difficult as my path seemed, I almost feel guilty about how easy it was compared to what Bruce, Amy and their family has been through.

Neal Branson ("...in sickness and in health...") and Candy (his donor and co-worker) are in surgery this morning. A local news outlet did a great story which you can see here (Deputy's Kidney Fight). The surguries should be starting soon. 

These are all miracles of people donating living parts of their flesh, blood and bodies to give another the gift of life. Please keep them all in your prayers. 

A New Week

Last week was just a rush! Thanks for everyone's support and encouragement. One last interview is scheduled to take place. Michael will be on Countdown with Keith Olbermann on MSNBC at some point. The interview has been postponed twice because Keith is taking care of his father who has been suffering Acute Kidney Failure among other issues. Because of the bond of kidney disease he wants to conduct the interview personally. At this point, scheduling is day-to-day. I will post when the schedule is definite.

Mr. Olbermann did a moving piece on the need for health reform last week where he discussed his father's trouble. Here's a link:

                            Keith Olbermann on Health Care Reform 

Tomorrow I plan to return to the story of my struggle with PKD.

An Exhausting Day

It's been a long day. Up at 4:30 to shower and iron a shirt. Barely got coffee into a cup before the driver was here to take me downtown for the CNN remote. Home again, catch up on emails and Facebook, update the blog, and off to work. 

Then the phone calls start. The first one is a request for an interview from Keith Olbermann (MSNBC) who's doing an hour long special on health care Thursday night. A round of phone calls and emails to family members ensues. Then a call from KABC Talk Radio in Los Angeles. They want a morning drive time interview. Another round of communiques.

Susan watched some talk shows tonight to take a reading. Evidently we paddled at just the right time and have caught a huge wave approaching its peak. It feels awkward to be at the center of attention when so many are so much more devastated. There many families caught in the health care pinch much worse than we are. We (I) have been taken care of to this point. We got into this whole thing when Susan responded to a Kristof column about a couple devastated beyond belief. There are many responses to Kristof's column about us that were written by individuals in far more tragic circumstances. But here we are and it is our time to carry the torch. The most uncomfortable aspect is being the pawn of so much flamboyant rhetoric.

I do want to make one thing clear. When we agreed to talk with Nicholas Kristof, we did not anticipate being a focal point for national debate. The issue is a moral one and one that should be discussed and resolved with a minimum of grandstanding hyperbolic rhetoric. I hear a lot of talk and opinions thrown around without regard for the subtler issues of the nature of diseases and how they affect the lives of individuals, and what medicine can do to enrich our human community, if indeed human community remains. 

While our family faced a crisis when it came to investigating the potential of Michael or Travis as a possible donor for myself, in the end insurance provided two successful years of dialysis and (so far) a very successful transplant. Without dialysis or transplant my life would have ended almost three years ago. 

The substance of the current healthcare debate is how Travis and Michael will be taken care of in the future.

A Bigger Forum

We wondered what, if any, reaction there might be to Nicholas Kristof's NY Times column on Sunday. The response was a little overwhelming. When I walked into the choir room for rehearsal on Sunday, it was being discussed. A friend heard about from a friend who saw it in Copenhagen. Friends of a friend read about it in New York. And of course it spread rapidly and virally on Facebook.

I could not resist reading the comments on Mr. Kristof's blog. Most of his audience approved and thanked him for sharing our story. A few called us "stupid," "ignorant," "negligent" among other things, but that's to be expected. Most were ignorant of the effects of PKD or the realities of dialysis and transplant. The moving fact is that 12% (33 out of 277) of those commenting had issues relating to the relationship of diagnosis (preexisting conditions) to insurability. The 33 broke down as follows:

• 16 were related to PKD
•  5 were related to other kidney disorders
•  2 were related to disclosure of HIV
•  5 were related to other diseases
•  5 were related to other private insurance issues

Of the PKD related issues, most were families just like ours, parents with PKD reluctant to have their children tested; siblings with parents with PKD, frustrated by their inability to help.


All of this feedback was very reassuring. I felt very exposed as we went out on this limb with Mr. Kristof. We were sure of ourselves but we didn't really know how many others there were who shared our concerns. Evidently quite a few and the response was gratifying. The column was certainly noticed and seized upon by individuals active with groups such as the PKD Foundation, fighting to find treatments and a cure.

The big surprise came early Monday when CNN called. Evidently they wanted to interview Kristof on Monday, but he wanted to do it Tuesday with us. So yesterday was a day of massive communications, arranging logistics, and making arrangements. They arranged cars to pick us up and get us to the studios and to take Travis all the way to Stony Brook for his class. We did screening interviews. I prepped by taking Anthony, my drum prodigy nephew to see Jack White and his new band, The Dead Weather. Always best to go on national TV exhausted, slightly hungover and hearing impaired!

The interview went smoothly. The David Letterman story was OUR lead in story! (Dave and Dave, Back to Back.) Travis and I each got in a couple of sentences, but it was Kristof's show. We were just pawns in his game, but we knew that going in. Travis was on a real set in New York with Kristof. I was remote from a small room on the 15th floor of building in downtown Dallas on a stool in front of a Dallas morning backdrop with lights, a camera and sound plug in my ear. An observer would hear nothing, then I would speak, then silence, then I would speak again. End of drama. Out the door, down the elevator, into the waiting limo and back home.

But I think we made a splash! The PKD people seem to be thrilled with the exposure and want to put our story on their website. It was extremely courageous of Travis and Michael to put themselves on the line, especially Michael in light of his diagnosis.

I hope it proves to have been worth the risk and effort and that meaningful health care reform is accomplished.