Hoping to Qualify: Getting Tested

The transplant center wants another urine sample.  An earlier one might have had microscopic amounts of blood in it.  I’ve worried at times about whether I would qualify as a donor, and this is a new excuse to do so.  This same urine issue came up three years ago as part of a routine exam, so I was tested, and it was of no significance.  That is what the nurse on the phone suggested this would be.  I’m spoiled.  Surely my worries are nothing compared to the anxieties of those awaiting a kidney.

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After registering online with the National Kidney Registry last May, I scheduled my annual physical with my doctor.  Fortunately, all but one of the tests that NKR required as a first step could be done as part of this regular exam, right in his office.

It was very encouraging to hear my doctor say that he thought I’d be eligible to donate, as he reminded me that my physicals are always pretty dull – because of my good health.  I have indeed been blessed with that all my life.  In fact, the only time I’ve ever had to stay overnight in a hospital was at the time of my birth.  My gratitude for this is one of my motivations for donating.

The special test was usually for those with suspected kidney problems.  I had to collect, refrigerate and turn in 24 hours of my urine!  When I started to tell Mary Beth about this test, she cut in, “That’s all I want to know.”  So I hid the bright orange jug in the back of the fridge.  If she or the kids ever noticed it, they never said anything.

My test results were sent on to the NKR medical board for review.  Meanwhile, I made the mistake of trying to figure them out myself.  I had a slightly high BUN ratio (whatever that was)!  This might be due to decreased blood flow to the kidneys (according to something online)!  My worries increased.  A month went by.  But I remembered that Diane’s email said to be patient.

Diane, the donor relations director at NKR and a donor herself, has been both knowledgeable and supportive throughout.  On July 14 I was about to call her when the email arrived from her that I had been eagerly waiting for.  I was approved to go on to the next step.  I felt relieved, a lot more confident that I would eventually qualify.  I checked the NKR online list of participating transplant centers and chose one for what was next:  a new round of tests.

These tests were more extensive, so I appreciated that the transplant center I chose allowed many of the tests to be done at my nearby local hospital:  a chest x-ray, an EKG, and a treadmill stress test.  While waiting for the latter, I looked at a golf magazine.  Waiting rooms gave me a chance to read things I’d never otherwise read.  I recalled a golf class taken in college.  Never very athletic, it was an easy way to fulfill part of my college phys ed requirement.  Once a golf instructor asked if he could play along with me at the municipal course.  He shot four over par.  I shot four times par – and that was before I realized I was supposed to count the times I swung and missed.  He was a good sport about it.

A renal CT scan confirmed that I do indeed have two kidneys (not everyone does).  Numerous blood tests followed over the next few months.

More than four times out of five, the medical staff (and all people, for that matter) had the same two questions.  The wording varied but basically they asked who I was donating to and why.  These were natural questions, and I had my short answers handy.

One nurse’s response especially stood out. After three or four “Wonderful!” exclamations, she told her story.  She had married a patient of hers who was on dialysis -five hours a day, three days a week.  He then received a live kidney from his father.  Unfortunately, the transplant, which took place more than thirty years ago, didn’t succeed, and her husband died of kidney failure at the age of thirty.

When leaving, at the point I’d normally give the medical person a quick thank you, instead she thanked me in a very heartfelt way.  Driving home, with moist eyes I thought of her loss – so vivid after all these years – and her appreciation.  I sensed that this journey I was on could be a very emotional one.

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Sharing Something Personal: Telling the Kids

I’ve always had mixed feelings and a knot of tension about sharing my plan to donate a kidney with others.  I don’t want to be a braggart.  On the other hand, I don’t want to hide something that is important in my life from people that I normally share things with.

Also, I do want to raise awareness of this issue of living donation.  Perhaps my story can help those called to consider this who haven’t yet realized it.  I didn’t recognize that call in myself until someone else shared their story with me.

In any event, after telling my wife of my desire to donate, I looked forward to telling our three children.  I was hopeful that they would take it well.

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May 6, 2011

“You’re getting a tattoo.”  That was my 21-year-old son’s response when I said I had something personal to share.

“No, but it does have to do with my body.”

“Just tell me.”  So I did.

“Why?”

“I have an extra kidney and others need one, so why not?”

He got it, noting that people die every day for lack of a kidney.  He said he wasn’t surprised that I wanted to do this, and was immediately supportive.  “But the kidney has to match someone who needs it.”

“Yes.”  I eagerly explained the National Kidney Registry, which I had just learned about.

“If mom is okay with this, who is anyone else to stand in your way?”  I appreciated this affirmation of what I was thinking myself.

I mentioned a transplant center at the same medical center where we took him years earlier when his knee was so swollen that he could not walk.  We had already broken one stroller from wheeling him around like a toddler.  Our fear was juvenile rheumatoid arthritis.  Fortunately it was an early case of treatable lyme disease.  The doctor stuck a needle into his knee to drain out fluid.  He remembered the doctor prescribing ice cream and how he thought that was the wisest doctor ever for knowing what a little boy needed after such a procedure.

Anyway, that night I felt more affirmation, albeit oblique.  He told my wife he’d heard about “dad’s latest crazy idea.”

May 9, 2011

My younger daughter smiled and sounded happy about my prospect of donating.  This encouraged me to launch into telling her many things I had learned, including how the kidneys of living donors tend to last about twice as long as those from – and then she cut me off.

“I know,” she said.  She was 15, and had recently attended a special school presentation by a kidney recipient.  She did not want to hear me say the word cadaver.  But she did not object to my kidney being cut out, and I appreciated that.  In fact, she asked if women can donate too.

I told her that today the donor doesn’t have to travel, because the kidney can be shipped to where the recipient is, adding “but it’s not handled like regular airline baggage.”

Laughing, she reminded me of scenes from the movie The Rat Race, in which a heart was being shipped, non too delicately.

“I think it’s great!”  She asked for a hug.  “I’m proud to be your daughter.”

May 14, 2011

I was glad that I had a trip planned to Vermont to visit my older daughter, so that I could also tell her in person.  As we shared samples of beer at a Middlebury brewery, I told her I was getting excited about something like nothing since Y2K (a very different story, which I will spare you).

After she heard what it was, she smiled.  “That’s cool.”

I ran down the critical need, how it is minimally invasive, its cost-effectiveness, and how if a chain resulted, there could be several folks that would get a kidney as a consequence.  “Maybe I’ll donate one too.”  Aha, I’m raising awareness.  I also thought how she, unlike me, still has plenty of time to consider this.

We discussed how kidney donation today makes a lot of sense, and how the issue needs to get more exposure – that if it can reach a certain threshold, perhaps enough chains can take care of the shortage.  She knows from her experience how important repeated exposure to an issue is, and we discussed my interest in blogging.  Back in her apartment she introduced me to the website I am using to create this blog, from her experience doing a wonderful blog during a college semester in Chile.

 

None of my children expressed any hesitation or concern about my going ahead with this.  All were supportive.  For that matter, all adults with whom I’ve shared this to date have been more or less supportive.  For this I am thankful.  Not all donors have been so blessed, especially the earlier donors who paved the way.  My hope is that more and more people will see their second kidney as a spare to share.

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Overcoming Inertia: Googling How to Donate

Like my first blog post, this entry and the next several ones will mostly be a look back to catch up on my experience regarding donation.  For this I’m using a diary begun April 27, 2011, the day my online research began.  In hindsight, I should have started this blog much earlier, but procrastination and perfectionism took their toll.  It seems that for some things, like my donating a kidney or just starting a blog about it, the hardest part is getting started.

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“How to donate kidney.”  I googled these words, but it seemed odd.  I didn’t need to have a specific recipient in mind to donate, but if I was serious about such a thing, wouldn’t I already have contacts?  Something more personal than a computer search?  But I didn’t.

Maybe this was one reason for my hesitation to start the research.  Also, I wanted to first re-read the article that had increased my interest in “altruistic” kidney donation years earlier.  But my office was so cluttered that I had no idea where it was.  In fact, all the clutter of my life may have kept me from moving on this.

Certainly one reason for my hesitation was a lack of urgency.  The need was not going away.  It’s not like saving somebody from drowning.  I had the rest of my life to donate my extra kidney.

In the meantime I happened to read about kidney chains.  One article was about a one-year-old in neighboring Lake Hopatcong who was a part of one.  The possibility of my donation sparking several transplants in a chain convinced me all the more that this was something for my bucket list.  Why wouldn’t I do it?  But still no sense of urgency.

The impetus to act finally came when it hit me last April that in two months I’d be 59.  In a year I’d be 60!  What if there’s an age limit?  I searched online.  When an age was given as a general guidelines, I saw that it was 60.  But I found no specific age restriction.  People have given much older.  It depends most on the health of the donor, and I’ve been blessed with good health all my life.

But something else caused me to hesitate.   My expenses would be covered, but still kidney transplantation has to be expensive.  It adds to our explosive cost of health care. Then I realized that years of kidney dialysis for those awaiting a transplant might be more expensive in the long run.  A quick online search revealed that indeed it is.  In fact, according to a recent article, Medicare, which pays most of the costs of kidney disease, saves on average $500,000 to $1 million for each dialysis patient given a kidney from a living donor.

So finally I got serious and searched “How to donate kidney.” A National Kidney Foundation page listed the steps and was a good start.  Other online sources described the ideal health of donors (good weight and normal blood pressure), risks to the donor (one site said chance of death is 1 in 1,700), and  benefits of living donation for the recipient (such kidneys tend to last nearly twice as long as those from deceased donors).  The more I learned, the more I wanted to go ahead.

Livingdonorsonline.org had a list of stories and blogs submitted by a variety of donors.  All the ones I looked at described the experience as extremely positive.  I found Father Pat’s story to be of special interest, since he was, like me, a Christian guy in his fifties.  Many like him welcomed emails, and I enjoyed communicating with him.  He is now 65 and still in excellent health.  That was encouraging.  There was much  in these many personal stories that I identified with.  They affirmed my decision.

One kidney site said that to donate, I had to work through a hospital.  But by then I  knew that that left out the important role kidney registries now play (and that web page has since been changed to include them).  Registries can arrange paired donations and chains, and they are well positioned to perform good medical matches.

The registry that really caught my eye was the National Kidney Registry.  Its clear and helpful website, the story of its origin by founder Garet Hil, and most of all its exponential growth in facilitating larger numbers of transplants through kidney chains, truly impressed me.

An article about a Chicago kidney chain confirmed my decision to go through a registry.  It explained that hospitals tend to use good Samaritan donors for their own patients, making it harder to set up timely matches.  Furthermore, when they do succeed, it results in just one transplant.  I wanted, if possible, to use my spare to start a chain.  Why not?

So on May 9, 2011, I called the National Kidney Registry.  Tom there said that after testing and acceptance, they would try to match my kidney medically against all in the pool and work to develop a chain.  I got back online, where my research began.  At 2:45 pm I filled out the NKR registration form and hit submit.

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Mixed Motives: Taking Stock and Giving a Kidney

This week, the week I am finally starting my blog, it’s becoming more intimate, more real.  A sample of my blood is being mixed with the blood of the person who has been chosen to receive my left kidney, as a final test to insure compatibility.  God willing, the transplant will happen the first week in April, along with a handful of others in a new kidney chain.

Monday, as I was pulling into the driveway after having the blood drawn, I thought how I really need to take good care of my body!  It’s not just myself that is counting on it now.  Is this a bit like part of what a pregnant woman feels?

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My wife thought I was kidding.  Then crazy.  One Saturday morning last Spring, as we both lay awake, I broached an idea that had been mulling around in my mind for years.  She had to be told, and no more putting it off.

“Well, dear, there’s something I’ve been thinking about for a while.”

“We’re too old to have another child,” Mary Beth replied.

“You’re right.  But this does have to do with health and biology.”

There was a short pause.  “You’re… going to donate a kidney.”

This surprised me.  “Bingo!  You got it right away!”

“You’re kidding.  Now tell me.”  After 25 years of marriage, Mary Beth knows me pretty well. “What are you really thinking?”

But this time there was no kidding.  I mentioned the article I read three years earlier, about a person who received a kidney from a living donor she didn’t know.  Then the kidney chains I read about, in which such a donation can go to someone who has a willing donor who doesn’t match but is willing to “pay it forward” to anyone if their loved one gets a kidney.  Then the 88,000 plus Americans that are on the waiting list for a kidney, and how every day, for lack of one, several of them die.

I told Mary Beth how I was just a year away from 60.  My biological clock was ticking.

She noticed I said all this without my tell-tale laughter.  “You are serious!  I just mentioned kidney donation because it was the craziest thing I could think of.”

I skipped over how I hoped to get perhaps some fulfillment, some satisfaction, through an act commonly described as altruistic.  How perhaps this is from taking stock of my aging life with all its unfulfilled dreams, irreparable screw-ups, and clutter.  Physical and mental clutter.  To do lists of things undone.  Major initiatives crowded out by minor details.  Perhaps a focus on this goal could help me transcend a load of discontent in my life, and remind me to be grateful.

I skipped all that because at the time I wasn’t aware of it.  I hadn’t yet reflected much on the inevitable “Why are you doing this?”  I hadn’t yet attempted to write down an honest answer.

Instead, I stuck with the mechanics, stuff learned online, about how the donation could happen at a transplant center right here in New Jersey, with just the kidney flying off to wherever needed.  How it would be minimally invasive, and probably require only a couple days or so in the hospital.  How my remaining kidney would grow in size to handle what two kidneys do.  How my life expectancy would stay the same.  How for the most part my lifestyle would not change, since I don’t box or skydive.

“No chance you’d ever skydive?  Good,” said Mary Beth.

I mentioned my interest in writing, and that this might be something to blog about.  I explained how there would be a lot of tests.

“Well, maybe you wouldn’t pass the tests.”  In her voice was the sound of hope.  “Why, you can’t even donate blood!”  That was a low blow.  It has pained me for years that my blood is always rejected on suspicion of hepatitis, AIDS, or what not.  But follow-up tests have always cleared this taint, not that that ever mattered the next time I tried to donate.

My mind raced with the anxious realization that Mary Beth had to have full veto power.  Like our engagement, her affirmative answer came before she was asked.  But it wasn’t worded the same way.

“Well, dear, if you really want to do this, I won’t stand in your way.”

It reminded me how much I love her.

In the ten months since that morning, our children too have consented and all tests have been passed.  A living donor transplant center has cleared me to donate through the National Kidney Registry.

Will that person get a kidney and a new chain begin?  That is my hope.  Will I get what I want out of this?  To a large degree, I already have.

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