That was close

What we've gone through in the last 36 hours. . .

Well, a brief of what's been going on for the past month -- my mother had spine surgery March 1 in Michigan, then began battling a series of infections. She was in the hospital a week and has been in a nursing home since then. She seems to get better, then catches something else. I've spent days calling back and forth to my father, to doctors, to social workers, to admissions directors, to nurses and to care coordinators.It seems like my father and I are yanked back and forth between joy and despair on a daily basis.

So, on Monday morning, when I woke up expecting to track down whether my mom had a cold, pneumonia or some other kind of infection, I had a message from my transplant coordinator on the phone. "Your test results show you have donor-reactive antigens, which means your body could react to Cheryl's kidney. . . This happens very rarely, but when it does, we consider it too risky to transplant that person's kidney into you." She said Cheryl and I needed to come in for further blood tests.

I raced down to the U and let the clinic know I was there. Then I went out and stood in the middle of Delaware Street (the only place I can get a cell-phone signal) leaving messages for my mom's nursing home, the care coordinator and pleading with a neighbor to go up and tell my dad to put the phone back on the hook so all these folks could call him. I missed my first call and waited another hour -- a soggy, distracting little island in the waiting room. Nothing inspires more confidence in a clinic than a patient sitting in the waiting room crying, I'm sure.

After a blood draw, I made it back to my car -- despite not having paid any attention to which floor of the ramp I'd parked on -- and got a call from my father as I pulled out. My mother was doing great -- had walked 200 steps in physical therapy that morning -- and, despite a congested-sounding cough, was in good spirits. She was on vapor therapy and antibiotics. What a relief.

However, I was still a wreck and couldn't conceal it from him. I told him what was going on; he knows what that feels like after having been "called" for a cadaver kidney only to find out after further testing it wasn't a match. "That's a real big fall," he said. Next, I had to tell Randy.

And then, of course, I had to start searching medical journals to try to figure out what was going on.. Nobody knows for sure what triggers donor-specific antibodies; one theory is that the number of vaccinations you go through prior to transplant -- a hepatitis B series of 4 shots, pneumococcal vaccine and, in my case, a chickenpox vaccine to try to prevent shingles -- jacks up your immune response. The second leading theory is "We just don't know."

(Unlike what one of Cheryl's friends suggested, Cheryl has NOT been biting me!)

She didn't take the chance to back out, bless her -- she said she'd be willing to do a paired-donation plan, where she'd give her kidney to someone else who needed one, and I'd get a kidney from someone willing to donate one. However, we'd lose the luxury of planning it around our own schedules, especially considering mine also includes having my native kidneys removed 6 months from the TX surgery. The small amount of yard work I've done this spring has proven they're more painful than ever, and I just don't want to wait any longer than I have to to get rid of them.

And then there's Cheryl's wonderful family -- her mom Mary, dad Jim and sister Cindy. Do you know what Mary told me? She's telling her friends to check out "our third daughter's blog about her kidney." She told me, "After all, you're going to have our DNA!" Thinking about letting go of that promise was almost harder than letting go of the transplant.

So, a long night and a hard day on Tuesday, though a lot of support from my co-workers, who knew what was going on since I'd missed the day's work on Monday.

And then -- a miracle. The Monday testing showed though I do have a slight donor-specific antibody response, it's not enough to call off the transplant. It's all in numbers -- mine range from 600 to 900, and under the 500 level, they don't even worry about it. The high end of the range goes up over 10,000, so that gives you an idea of where we are.

My transplant coordinator had texted back and forth with my surgeon, who's in Utah this week, all along the way and got back "It's a go!" from her. I imagine her at the top of a ski run somewhere, thinking "Of COURSE this would have to happen with Holly. . ." Something about our interactions makes me think I'm the "Shopko kid" at the transplant center -- the one everybody knows by first name.

So, thank God, we're still with our plan.

And, as Cheryl predicted, after the last day and a half, we'll probably both sleep REALLY well tonight.

------later -----

Well, mine may not be the face that launched a thousand ships, but I have an immune system that's launched a research study!

My surgeon -- when she got back into town from that ski trip -- called to say that yes, we were a go on the transplant, and besides that, this episode had inspired the team to look into low-level DSA measurements and exactly how much they do count in long-term transplant survival.

"We got to talking about your situation, and it seems like time to look at it further," she said. "We agreed that someone should look at people with mild DSA reactions like yours and see how they did over the long term.

"And that means I get more work!" she said cheerfully. (As much as she loves doing surgery, and she has said just that in so many words, she's also apparently ready to slice into long-term tracking studies to ferret out this information.)

Meanwhile, Cheryl and Cindy will also be a long-term study of their own. Two sisters just two years apart, with similar dietary habits and living in the same house -- it's just too good for the U to pass up.

They'll test both sisters once a year in a daylong workup to see exactly how they both do over the long term. Is Cheryl's sole kidney keeping up? Have there been some kinds of changes that mean she's getting sick more than Cindy? etc.

So, my panic has launched something that may be helpful and prevent panic for hundreds of other patients. And Cheryl will have a lifetime's worth of diligent, no-stone-unturned annual physicals.

I hope that's good for both of us.

Divergent views

As we discuss my upcoming transplant, it becomes clear Randy and I have different viewpoints on it.

For a year, I've been looking forward to this as my lifeline, as what will literally get me back to the active, enjoyable life I remember.

For the same year, the realization that the transplant is looming has clouded almost everything he's done. Logically, he knows it's a step forward. But the operation, the meds, the whole process has him frightened.

-edit 5/28/2010-
I'm posting here after the transplant but the insight gleaned was valuable. Holly was moving emotionally from dying to rebirth. Her body was failing her and only extreme effort was going to hold that eventuality at bay. However, things were going on unregulated and because the disease was in control of the rate of failure there was little either of us could do. Holly's nephrologist said as much. I hit the skids emotionally the first time when we went to tell Holly's parents and the direness of her situation came home to me.

As it became time for the transplant it became more and more my concern that we would become responsible to and for this organ. Once the graft was made it would become our responsibility to regulate things that take care of themselves for most people and would no longer take care of themselves. We were moving to a new state of vigilance as trustees of this gift. Also I was (and am) faced with my responsibility in the face of all the communicable illnesses presented to me because I work at a university with many stressed students. Having a working immune system allows for a more carefree life. I also do not like to be in a situation where I do not know my responsibilities or my capability to meet them.

My anxiety was immaterial compared to the potential for a new and challenging life for Holly. At this point after the transplant I'm figuring out my role and helping Holly as she settles in to her second life.
-RSS-

It's like I've been carrying a lot of this silently -- which is true -- and he's not sure he can handle the next step, as it will involve having to care for me to a certain extent, drive me around and (most likely) argue with me when I want to do too much.

I think at base it's setting a date that makes it all too real.

First in his family

Duaine Wenzel, fearless, as a collegiate ski-team member.

Picture yourself as a young father with a wife and three-year-old daughter, living in a rented house. You're the sole breadwinner, and though you've been saving for 15 years to be able to buy or build a house, it's slow going in the 1970s inflation spiral. Your wife is a full-time mom and homemaker. She has a college degree in piano performance and instruction, but in a town of 2,000 piano teaching doesn't provide a living.

Your mother, living far across the state, dies suddenly of a heart attack. At the funeral, you find out that she had a genetic kidney disease that spiked her blood pressure and triggered the attack. By the way -- you'd better get checked out. You drive back home with wife and daughter, keeping your panic to yourself. How will you ever get your wife into a house and provide for her after you're gone? How will you get your daughter raised and through school?

The specialist you see says "Yeah, you've got it, but don't worry. You won't live a full life, but it's not a bad death. Not painful or anything like that."

That was what happened to my father in 1971. He had always been more than healthy. Played football in high school, was on the ski team in college. Was in the army in Marshall-plan Germany. Spent a summer climbing up and down the ladder to a fire tower in Washington state, splitting his own firewood each morning. Outworked, outhunted and outfished men who were younger than he was. Was the first in his family to go to college and the first to get a master's degree.

Now he was the first to know he had polycystic kidney disease.

Why his mother wasn't diagnosed we'll never know. But others in her family must have had it. You only get it if one of your parents has it, and children have a 1 of 2 chance of inheriting it. (This is another good reason for me not to gamble.) Thinking back over her forebears, in England or Germany, there's a straight line somewhere of young grandparents dying, parents gradually becoming sick.

My father addressed this problem as he has so many others in his life: with his faith, with hard work, with renewed devotion to my mother and me.

By 1974, he was building our new house. With everything that came together, it could only have been divine intervention: sudden gifts from relatives, bargain-basement prices on the lots, a credit union which recommended a competitor due to its lower interest rates. My father made sure to do his part: he sledgehammered the ledge out of the corner of the basement, helped the mason lay block and helped the lone carpenter he hired put up the framing until midnight each night. And put in a full day's work each day.

In 1975, when we moved in, there was one bathroom with a working sink and toilet -- in the basement -- and the "walls" between the rooms were sheets and fabric remnants. My mother stacked up cardboard boxes for cupboards and made meals in an electric roaster. And I acquired a lasting impression that sawdust and drywall compound were "homey" smells. To this day, I can walk into the renovation project that's driving someone else mad and give a sigh of contentment as though it's a roaring fire and Thanksgiving dinner. It conjures up a secure place where my father was constant, invincible and nothing could go wrong.

Meanwhile, my father struggled -- not to make up for lost time, as he'd worked at any job he could find since he was 11. Instead, he struggled to cram a lifetime of saving and preparation into the dwindling time he feared he had left. Was it 10 years? 12? before he found out there were other alternatives to that "not painful" death? Thanks to that doctor's apparent ignorance of kidney dialysis and transplants, he'd shouldered a lot of pain already.

He finally had to consider early retirement from a job he loved -- DNR wildlife biologist -- as the prospect of dialysis neared. He retired in his late 50s; I think he could have easily worked until 65 or more, had his body been able to keep pace with his mind and work ethic.

He's had a kidney transplant, open-heart surgery, hernia repair, gall-bladder surgery and removal of part of his colon. He understands his treatments, does whatever he can to help his health practitioners and is a model patient at home and at the hospital.

One time he was telling me about one an appointment for a stress test. He was left in the room with the treadmill, in a hospital gown and socks and shoes, as the tech left, saying she'd be "right back." He has so little body fat anymore he doesn't even have enough padding on the bottoms of his feet, so he was cold. He shivered for more than 45 minutes before she returned. "Did you say anything?" I asked.

"Oh, no," he said. "I always think somebody else may be having a worse day than I am."

I just hope the PKD gene isn't the only thing I get from him.

New date!

It only seems like the transplant that never quite makes it into the station. . .

We were on for April 2. We're now on for April 22.

It actually wasn't a number-recognition problem on my part. Cheryl called a couple weeks ago to say she'd gotten an odd call from her transplant coordinator (they have us working with two completely different "teams" -- kind of like the seller's real-estate agent and the buyer's real-estate agent.) Her people said my surgeon was going to be "out of the country" the week of April 2.

I promised I'd have my people contact her people, and put in a call to my transplant coordinator. "Your surgeon is so sorry -- it turns out she wasn't coordinating her work calendar with her home calendar and she's going to be in Utah all that week!" she said.

Well, I've certainly done that kind of thing often enough -- though my range of motion is generally between Roseville and North St. Paul. Ah well -- I have a little more time to clean the house, get projects under control and try to get ahead at work.

And Cheryl gets to accompany for Easter at her church! "From doghouse to undoghouse," as she puts it.

Blessings all 'round.

Cheryl's offer

Cheryl and I were together for our usual Friday night get-together; we watch EastEnders or put in an old movie and work on various projects: knitting, sewing, and so forth.

We were left alone as Randy ran home to get his computer. By this point, it was April, 2009 and I was down under 15 percent function. I thought I should warn her that I was going to be going on dialysis, maybe even within the coming year. "This is all happening that fast?" she said, shocked.

On Monday, it was my turn to be shocked. I got an e-mail at work from Cheryl offering me one of her kidneys. "It's something I've wanted to do ever since you were first diagnosed," she said. "I had a co-worker who gave a kidney to her cousin years ago and she's doing fine." I told her no, thank you -- I had reason to know how important kidneys are. I couldn't believe she'd be that courageous and generous. . . well, yes, I could.

Then I started thinking. Cheryl's kidney wouldn't be taking a kidney away from a child or parent -- she wouldn't be offering it to anyone but me. I looked up living-donor survival and quality of life online. At the time, it didn't look like there was much difference for a person with one kidney vs. a person with two. (This good news came out about a year later: http://www.scientificamerican.com/article.cfm?id=kidney-donor-mortality)

So, I told her we might as well get tested and try. If nothing else, perhaps we could do "paired donation," where she'd donate to someone else in need and I'd receive from another caring donor. In typical pragmatic Cheryl fashion, she said, "Yeah, I thought you'd come around. I figured we'd just have to wait until things got really ugly."

I called my kidney specialist, fully expecting he'd direct me to a certain hospital. Wrong: "People generally just pick whatever transplant program they want," the receptionist told me. So, I sat down and looked through transplant success rates in Twin Cities hospitals. The University of Minnesota was a percentage point or two ahead of the others.

It felt like the end of a long, hard winter -- years long. At work I went into the former darkroom -- the publisher was converting it into a lunchroom. We'd never quite gotten used to the sun glaring through that window. It was still a nice, private place to make calls.

I balanced my notebook on a chunk of 2 x 4 on the windowsill and called my insurer to check on my coverage. I called the U to set up an initial day of tests. The whole time, the sun beamed through the dusty window onto a room that was a work in progress.
Like me.

Downhill fast

In early September 2007, I was at my parents' house and something was wrong. My head felt "full" -- I couldn't collect my thoughts or concentrate on anything. I went to my primary-care physician when I got home and he immediately set up an appointment with a kidney specialist. My blood pressure was no longer controllable with the regimen I was on -- it had finally gone right off the charts.

At any time, somewhere from 20 to 25 percent of the body's blood supply is going through the kidneys. That's why high blood pressure is such a good early indicator of kidney disease. At the specialist's office, I found out my disease had progressed to the point that I had somewhere under 30 percent function in my kidneys. Not a good thing to find out a day away from your 40th birthday.

I'd always expected to follow the same basic pattern as my father: a busy work and home life, early retirement and then onto dialysis and to a transplant, maybe in my mid- to late 50s.
So much for that plan. I'd have to either go on dialysis while I was still working and wait for a transplant.

As difficult as it was to live with knowledge of this disease over the past 13 years, this was devastating. How would I even be able to keep working while on dialysis? With waits of 5-7 years for cadaver kidneys, would I even make it?

I'd heard about living donation -- the kinds of people who simply want to help and sign themselves up on a list to donate a kidney. But I figured those should go to either children or people with parents.

Little did I know what was coming.