Not a Horse Apiece

by Sharon L. Buffington

Not all things are equal. In particular, the costs between dialysis and immunosuppressive drugs following a kidney transplant are not equal. It is not like the difference between two quarters equaling fifty cents or five dimes equaling fifty cents.  They are not six of one and a half dozen of the other. They are not a horse apiece.

I never even thought about having a kidney transplant.  I was very healthy.  Oh…there was that Multiple Sclerosis diagnosis when I was in my first year of law school, but I had never really been bothered by it since I graduated and passed the Minnesota bar exam in 1989.  I did take a lot of ibuprofen for law school headaches.  After law school, the headaches continued.  So did the ibuprofen.

Practicing law in Stillwater, Minnesota was a lot of fun for me.  I had the confidence of the bench and fellow attorneys.  The only concern for me was that as a private practitioner, I could not obtain health insurance due to my MS.  Thank goodness I was healthy because I had a lot of responsibilities with my general and appellate practice, family and friends, albeit not necessarily in that order.

In late November, 2003, I became quite ill.  I do not mean, I felt a little bit sick.  I felt awful and after a battery of tests discovered I was hyper-thyroid and in renal failure with 11% function of my kidneys. I thought, if I had had insurance, I would never have fallen under the spell of the minute functioning kidney.  But, that is another essay.

Park Nicollet Clinic in Minneapolis, Minnesota, suggested I go on dialysis.  They never once suggested transplantation because they do not do transplants.  I did not want to go on dialysis because while it would preserve my life for a period of time, it was not the sort of life I thought of for myself.  It sounded horrific. However, we gamely went to the dialysis unit, where the doctor wanted to put in a fistula.

The doctor on the dialysis unit told me it was the typical approach used for ongoing dialysis and is considered the Gold Standard.  I do not often think of myself as vain, but I can tell you, I did not want my arm looking like it had been in a dogfight with big bulges.  I told my partner, “I do not want to do this.  I want to go home”.  We put on our long winter coats and as I stepped outside of the preparation room, the doctor asked what I was doing.  I told him I was not going to have dialysis and that we were going home.  In a tattletale manner he said “Then I am going to tell your doctor”.  Let him.

Virginia Postrel states:
“As the long-term treatment for permanent kidney failure, dialysis is a good-news/ bad-news technology. It is life-preserving, but often debilitating and demoralizing—akin to saving polio patients with iron lungs, or treating cancer with never-ending chemotherapy. Dialysis patients are prone to anemia, bloating and weight gain, low blood pressure, and infection from their catheters. They gradually lose the ability to urinate and can drink very little (not very little alcohol—very little anything).  Many children on dialysis suffer from stunted growth. Dialysis does not make patients well. It simply postpones their deaths.  “Yes, it keeps us alive, but this is not what living should be like,” wrote Bill “Epoman” Halcomb, the founder of the patient community at IHateDialysis.com. (Halcomb died in March 2007, after 13 years on dialysis. He was 34.) Dialysis patients typically spend three or four hours hooked up to a machine, three days a week, making work, school, or travel extremely difficult. “Tuesday, Thursday, and Saturdays I show up around 4:15 in the morning, and I’m on the machine by about 4:30 or so. It’s about 8:00 or 8:15 when I’m out of there,” Henry David, a 60-year-old Los Angeles business owner, explained to me in February. Why start well before dawn? “It’s my choice, because
I want to have something of a life.’”  “With Functioning Kidneys For All”, The Atlantic, August 30, 2011.

In the beginning of 2004, a physician friend of mine listened to my concerns.  She telephoned the Mayo Clinic in Rochester, Minnesota and was put in contact with Lynette Fix, a kidney pre-transplant coordinator.  Ms. Fix explained the qualifying process to my friend and suggested I contact the unit.  I telephoned Ms. Fix, who was pleased to learn I had never undergone dialysis because of the toll it takes on the body. She requested my medical records and said once they were received an evaluation appointment would be set up.  I was also told we would discuss how I was going to pay for all of this after my evaluation.

By February 2004, my medical records arrived at Mayo.  An appointment was set up with Lynette Fix. She explained that I would have a complete physical to determine my current status.  The examination would take three or four days beginning with blood  tests, including tissue type analysis, chest x-ray, electrocardiogram, stress tests and  heart tests.   My thyroid was examined due to my hyperthyroidism.  Ultimately, an evaluation by doctors trained in kidney transplantation would be presented to me. I also met with Danielle Peabody, a sweet and intelligent social worker assigned to my case.  I cried a lot in her presence because of the state of my kidneys, now functioning at 5%.  I may have cried over not having insurance but I do not remember.

I had no health insurance because of my pre-existing MS condition.  However, Ms. Peabody told me I qualified for Medicare because of my End Stage Renal Disease (ESRD).  Three years of care.  Three years.  It would pay for the transplant and my immunosuppresive drugs.  And, with the help of my family and friends, I went for it.  We all went for it.

Undergoing a rigorous physical is no walk in the park. I remember during a drug induced stress test the nurse asked me if my heart was pounding harder than I could stand.  I told her I had felt harder heart pounds in the courtroom.  Oh, and the colonoscopy.  Ever had one of those?  The doctor told me I did a good job getting all cleaned out.  I told him I was so clean I could whistle out my ass.  He agreed.  I endured.  It turned out I lost my native kidneys due to all that ibuprofen I took in law school.  Deemed analgesic nephropathy. It did me in. I also had to have my thyroid removed because it was cancerous.  Once the tests were completed and my thyroid was no more,  the next step was finding a donor.

I was fortunate because I have been a nice person and had friends and family who wanted to part with a kidney.  All for me.  Mayo telephoned and said not to send anymore donors.  They had enough.  My donor was my friend Paulette, who is as  entrenched a gardener as am I.  With gardening, you look for the lovely bloomers and steadfast returns.  This is not something you always find in the law.  And after all that time, energy, and work on the part of the Mayo Clinic, friends, family and me…I had a transplant on April 29, 2004.  I called my new kidney Little Paulette.  And I had three years of drugs and care.  Over the years, the Mayo Clinic does not fall away.  Care continues in its magnificent way.  And since my transplant, I have had a post-transplant coordinator, Debra Tarara.  Once you have a transplant, you have another birthday.  You have been given life.  This is very advantageous from a party perspective because you now have two birthdays.  The first year transplant birthday party is different though.  Having to drink everything from a sippy cup is an adventure.

Three years of Medicare would take me to age 63 1/2. What was I going to do for the remaining year and a half?  Once my Medicare ran out, I had to apply to the Wisconsin based insurance program (HIRSP) for those who cannot obtain insurance elsewhere.  That application in itself required my legal mind.  After Medicare ended, HIRSP told me I had to wait for six months before I qualified for its program.  After some discussion, I pointed out that because I had been removed from a government program, I thus was immediately eligible for HIRSP.  They agreed.  Thank goodness for the JD.

HIRSP was costly.  Over $600.00 per month.  I could afford it, but it was a struggle. I was now drawing my social security and it took all of that.  I did not have a mortgage payment.  I paid off my house in 2000.  I do not carry debt.  My kids are grown.  But, it diminished my limited savings and retirement.  I was counting the days until I qualified for Medicare at age 65.

All the while I wondered about the many people who could not pay the costs.  If I could not afford my immunosuppresive drugs and health care I would be forced to go on dialysis.  I could see my fate.  I would have to give up all the hard work of all those people at the Mayo Clinic.  I would have to forsake my wonderful donor.  I would have to give up Little Paulette.  I would have to give up my medications.  Not because of anything that I did.  Because it was the law.

I remember my wonderful Mayo Clinic nephrologist, Dr. Tom Schwab asking me one time, “What is the worst thing that can happen to you?”  I said “I would lose you as my doctor” and he said “No. Dialysis”.

“Long-term dialysis is a federal entitlement. Under a special law, Medicare covers everyone, regardless of age, who has made minimal Social Security tax payments–about 319,000 of the country’s 400,000 dialysis patients. Compared with dialysis payments, every transplant from a living, unrelated donor saves an expected present value of almost $100,000 in medical costs, according to a 2003 American Journal of Transplantation article by Matas and Mark Schnitzler, an economist then at Washington University in St. Louis and now at the Saint Louis University Center for Outcomes Research. ….That purely financial estimate ignores the enormous benefits for the patients’ quality of life, of course. It also excludes the economic gains from returning to productive work–only about 10 percent of dialysis patients are employed even part-time–and the fiscal effects of paying taxes rather than receiving disability payments.” “Apathy Causes Kidney Patients to Die Needlessly”. Conor Friedersdorf,  The Atlantic, August 30, 2011.

The three-year limit imposes a restriction making no sense.  ESRD takes up a large portion of the Medicare budget.  Have you ever asked yourselves why that is?  It is because we do things like let ESRD people fall off the smart low cost financial wagon to become cabbages on high cost dialysis.  Would any of us knowingly give up something which took so long to build to go back to something so much less effective costing more?  Our government loves collecting taxes.  But, with many now having to go on dialysis, time for work diminishes and taxes evaporate. Many may also be awarded disability payments.

The cost of maintaining immunosuppresive drugs and medical care does not come close to the cost of dialysis.  When is comes to the choice between dialysis and  maintaining a healthy transplant those horses will never run together at the Derby. They are not a horse apiece.  Indeed, it is about being sensible and yes, morally and ethically correct.

I was re-reading the Yale Medical School Graduation Address, May 2010 given by Dr. Donald M. Berwick, administrator of the Centers for Medicare & Medicaid Services (CMS).  While he was speaking to the graduating class encouraging them to remember the importance of standing up and doing the right thing, it is readily apparent that his words are equally imperative to those depending upon you to extend Medicare.

You can. That choice is not in the hands of nameless power, not fated to control by deaf habit. Not “our policy,” “the rule.”  Just you. Your choice.  Your rule. Your power.

What is at stake here may seem a small thing in the face of the

enormous health care world you have joined. It is as a nickel to the $2.6 trillion industry.  But that small thing is what matters. I will tell you: it is all that matters. All that matters is the person. The person. The individual. The patient. The poet. The lover. The adventurer. The frightened soul. The wondering mind. The learned mind. The Husband. The Wife. The Son. The Daughter. In the moment. In the moment, it is all about choice. You have a magical opportunity.  You have the opportunity to decide. Yes, you can read the rule book; and someday you can even write the rule book. Decide. Yes, you can hide behind the protocols and the policies. Decide. Yes, you can.

I could not say it better.  Even if I tried.

About nkf _advocacy

The National Kidney Foundation's advocacy movement is for all people affected by CKD, transplant candidates and recipients, living and potential donors, donor families and caregivers. We empower, educate and encourage you to get involved on issues relating to CKD, donation and transplantation.
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