As my readers know, Kennan was an organ/tissue donor and my family’s experience with that process has helped ease the pain of our  loss.  I hope Frank’s post below and Kennan and my experience outlined in the article that appeared in the Post last year will encourage readers to discuss donation with their loved ones.   Hopefully it will remain an academic discussion for my readers, but, if not,  our experience has shown that grief is eased by knowing your suffering has been able to help others.—Libby

by Guest Blogger Frank Sietzen, Jr.

In today’s America it is a silent epidemic affecting nearly ten percent of the population. In the African-American and Latino communities it is an unseen and little discussed shadow that shortens life spans and careers, complicates lives, and destroys families. I’m talking about kidney failure and the consequences and complications it brings.  In the greater Washington, DC area kidney disease in adults is 24 times the national average, evading medical science’s understanding of the cause. Is it caused by Diabetes, or hypertension, or obesity? Whatever the reason, it is a disease without a cure, leaving only three avenues for the patient. One is trice-weekly dialysis, done in a clinic or hospital; the other a similar treatment done by a smaller machine at the patient’s home. Ultimately, though, the best solution for failing kidneys is to get a new one, either from a friendly donor that matches you, or from a cadaver whose kidneys become available.

There is, though, just one problem with this: and that is the demand for matchable and working kidneys far outstrips the availability. The great question, it seems to me, is why? In America, unlike Europe, the public looks queasily upon organ donation. The complex system of registry offers donors no subsidy, and a living donor is subjected to a week’s worth of tests that must be done here at the hospital that is to conduct the actual transplant operation. Depending on where the donor lives, the cost of a week in a hotel room plus the cost of airfare to get here and the lost week of work all quickly adds up. And people wonder why more don’t donate? Even the process of making your organs available after death is complicated. So until the system is reformed, and some remuneration created to entice donors, people like me must wait years for a cadaver’s matchable kidney. There is one option available to virtually everyone that can vastly increase the pool of donors. When you renew or get a driver’s license in the Commonwealth, there is a check off box in which you can list yourself as an organ donor. Painless, simple and easy. Why more folks don’t take advantage of this is a mystery to me.

Some two and a half years ago, I submitted to the process that leads to my name going on the transplant list. I spent most of a day getting poked, prodded, and having 12 samples of blood taken for analysis and registry. Once completed, a potential recipient is rated based on the genetic composition that makes a match easy or more difficult. The easier you are, the easier it would be for a cadaver to match you. Then each year a stress test is done to make sure I could survive an operation. And every month, I must take and send to the hospital that is my primary designee for the operation a sample of blood. All of this stuff is up to me, the patient, to do. In my case, I had two friends who wanted to donate a kidney to me. One was found to have cardiac problems, and thus eliminated. The other discovered that he had kidney problems himself, previously undetected, another case for elimination. So I wait, and wait, and wait some more. At this rate, I’d even accept a Republican kidney!

The only consolation is that there are hundreds in the same boat as me here and thousands more across the country. Until a way is found to increase donations, help people understand that there are easy ways to become donors after your death, or provide some system of compensation for living donors, hurry up and wait is the tune of the day.

Frank Sietzen is a journalist, speechwriter for NASA and co-author of New Moon Rising about the Columbia accident.   He was my campaign manager in 2008.   Frank is also one of the thousands of Americans who must receive kidney dialysis treatment three times a week or face death.  He hopes to receive a donated kidney soon.  I’m pleased he has agreed to write occasionally for this website about his experiences and thoughts on the health care debate.—Libby

by Guest Blogger Frank Sietzen, Jr.

Imagine if you will this scenario: You are alone in a darkened landscape where nothing is familiar and where there are no stars or guideposts to help you navigate. Every time you think you have reached stable ground, it shifts beneath you, requiring that you quickly learn new terminology, procedures, and make choices that could change your life and your health. To understand your predicament, you are bombarded with information coming at you from every imaginable source, whose reliability and accuracy isn’t always easy to discern. And the end of the day, it’s solely up to you to implement these new ideas, products and technologies into your lifestyle while at the same time keep a watchful eye out for complications and side effects which lurk around every corner. Some days you feel able to navigate this terrain, but on other days your mind and spirit may be too tired to barely do the basics to keep you safe.

Sounds like a place you’d like to visit?

Welcome to my world.

I am one of the estimated half of the adult U.S. population –that’s 150 million Americans-with at least one chronic illness. And I am also one of 26 million Americans with End Stage Renal Disease, the final and irreversible step in kidney failure. A few blocks from my home in Arlington, I visit a medical clinic three times each week. There, a machine the size of a small filing cabinet is keeping me alive. To compensate for my malfunctioning kidneys the machine removes and cleanses my blood, returning it to my body in a process called hemodialysis. I must endure this treatment-shared by more than 75,000 Americans every year-until I receive a transplanted kidney. Since that wait in our region is more than five years, that machine has become my new friend.

And I have been introduced, however reluctantly, to the American health care system, in all its glorious strengths-and weaknesses. Given these circumstances, health reform is to me more than a matter of headlines. While I am fortunate to have a good commercial health policy, I wake every day with the prospect that, given my condition, here in Virginia it could be canceled at any time, with no court of appeal. True health reform that lowers costs of policies and strengthens consumer protection is greatly needed. But right now, the legislation is bottled up in Congress, thanks to our Republican friends looking out for the insurance industry. 

Should we fail to seize this moment, future trends are stark. According to the Congressional Budget Office, health care costs will account for 25 percent of GDP by 2025 and 49 percent by 2082, if we do nothing. That would condemn millions of future patients like me to a health care system that will be increasingly inaccessible and unaffordable for most Americans. What a tragedy it would be to say we faced the call for reform and answered “no, we can’t”.

So keep re-electing Jim Moran in the House and Senators Webb and Warner. And please continue to support the President’s call for reform. Life on dialysis is made liveable for me by my work as a writer and my involvement in political campaigns like Libby’s recent campaign for School Board, and other ways to strengthen the Democratic Party. Because if it is reform we need, then it will only come from Democrats!

I spent Monday and Tuesday this week at the National School Board Association’s Federal Relations Network Conference.   School board members from around the country came for briefings and “how to” sessions before spending Tuesday on Capitol Hill meeting with their senators and representatives.  We heard from Secretary of Education Arne Duncan who talked about the need to invest in education if we are to not fall behind economically.  He also talked about the proper role of the federal government in education policy: to set the standards for success, not the prescription for success.  One of the interesting ideas they have is to bypass states in some of their funding and directly give support to school divisions.  That could be a good thing in states that do not support their public schools well.  Here in Virginia, I have very real concerns about the push for charter schools.  Yes, I’m well aware the President and Secty Duncan support charter schools.  Charter schools can be helpful when you have totally dysfunctional school systems.  But when things are working well, and there is choice for parents, and there are relatively high standards, as is the case in most Virginia districts….....charter schools could wreak havoc with what is working well and do nothing to move education forward.   My fear is that in an effort to cut spending and to not raise taxes no matter what AND to appear to be an “education governor”,  the “solution” may be legislation to take charter school approval away from school boards and put it in the hands of those who think any charter school has to be good.  Money has to come from somewhere, and it almost certainly would come from our schools.

At the conference, it was a pleasure to spend time with other school board members and our legislators and their staff:  all intelligent, well-meaning people trying to help make government work better for everyone.  Hearing about the difficulty of getting almost anything done in the current political environment was not so pleasant.

I found myself walking to Union Station from the Library of Congress Tuesday evening in the snow.  I was alone and the area behind the Capitol was almost deserted.  The Capitol and the Supreme Court were lit with a warm light and the snow swirled gently as it fell. I stopped to look and thought of all the history in those buildings and the centuries now of Americans trying to make our government work well for everyone.  It was a magical moment.  I said a silent prayer for our nation feeling lucky to be, for a short time, a very small part of a very great effort.