Happy National PKD Awareness Day

I have a wristband. It’s one of those silicone rubber types, in a teal green color, and in six letters it delivers a simple message: END PKD.

When I wear my wristband, no one asks about it. It is overlooked, much like the disease it represents, a genetic disorder that is one of the four leading causes of kidney failure in the nation.

end_pkdPolycystic kidney disease, or PKD, affects millions of people worldwide. My wife suffers from it. Cysts filled her kidneys to the point where they became more than twice their normal size and began to cease functioning.

There is no cure for PKD. The outcome is always the same: sooner or later, the sufferer reaches end stage renal failure. At that point, the only options are dialysis or an organ transplant.

Last year, my wife, who is in her mid-forties, received the news that her kidneys were failing. She was put on the national organ transplant waitlist but we both knew that waiting for a donor to come forward was a long shot. The idea of spending years dependent on dialysis seemed both unpleasant and medically less than ideal. A living kidney donation, we were told, was the best alternative. But whose kidney?

In February of this year, I decided to offer myself as a potential donor. If I said it was an easy decision to make, I’d be lying, since there were many factors to consider. We do not share the same blood type and we are obviously unrelated, so I thought it might not work out. But making the offer and getting screened was a small act that felt like the right thing to do.

As it turned out, the screening showed I was a suitable match. On August 15, we had the transplant surgery. I came to believe it to be a way to move forward and do something positive for her, for our children, and for our families.

As you read this, my kidney is working in my wife in place of the ones that PKD destroyed. However, this does not end PKD for her or for the population. Much has yet to be done to understand how the disease works. Current research holds out hope that, by reducing cyst growth with appropriate medication, those with the disease can delay end stage renal failure and live with their own kidneys for as long as possible.

Today is National Polycystic Kidney Disease Awareness Day. I am wearing my wristband both as a symbol of where we’ve been and as a reminder of what we still need to do. If you see me, ask me about it. I’ll be happy to tell you what it means.

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25 Ways to Appreciate a Kidney Transplant

Last year, we learned that my wife would require a kidney transplant. This did not come as a surprise, since she suffers from polycystic kidney disease (PKD), a genetic renal disorder that affects one in every 500 people and sooner or later destroys the kidneys’ ability to function.

0817131036After some soul searching, I decided to give her one of mine. It was not an easy decision to make since there were many factors to consider, but I am at peace with it now. In fact, I’ve come to appreciate some things about a kidney transplant that I never would have thought of before.

After having read Amy Gutman’s 40 Ways to Appreciate a Kidney Stone, I thought I would create my own list of ways to put a positive spin on a tough situation. (She, in fact, only came up with 25, so we’re on par with that, and I think it’s plenty.) So here it is…

25 Ways to Appreciate a Kidney Transplant

1. It’s not cancer. An organ transplant is major surgery with all the attendant risks. However, it is a fairly proscribed event–especially kidney transplants–with defined boundaries and well-understood outcomes. Cancer is still the king of menacing diseases. There is so much that remains unknown about cancer, and so many ways in which it works, and the outcomes are so uncertain. It really destroys lives.

2. It’s not some mystery illness that eats away at one’s quality of life without any hope for a cure. In fact, there is very little that is mysterious about kidney transplants any more. The first one was performed successfully in 1954, and today, thousands are completed nationwide every year.

3. We only need one kidney anyway. The reason for why we have two is buried in the mists of prehistoric time. Today, in most developed countries, the second one is a redundant system we’ll probably never need. And studies have shown that the long-term health of donors is not significantly different from that of the general population.

4. A kidney has an almost plug and play quality to it. It’s a relatively simple organ that performs its job well. Once you get the right match and make the transplant, it starts to work. My wife was producing urine almost immediately, and her blood chemistry improved dramatically within days.

5. Urine never looked so good. The production of urine is a bodily function we all take for granted. But were it not to happen, we would die. My leftover kidney has taken up the task heroically, and while I have been annoyed these past few days by how often I visit the bathroom, I am also very thankful that all is well for both me and my wife.

6. Kidney transplantation is quite literally life-saving. I’ve never saved a life before. Now I have.

7. Becoming a living donor does not require that you be a blood relative to the recipient. While it can make screening easier, it by no means is an absolute rule. I am a case in point.

8. Becoming a living donor does not require that you be the same blood type as the recipient. I am Type O and my wife is Type B, so I’m what’s called a “universal donor.” But more than that, there is so much that is understood about the transplant process, and the anti-rejection drugs have become so effective, that blood type matching is less important than it used to be. Frankly, the fact that it was a living donation is more relevant to her long-term outcome than any blood type match.0816130915

9. In by 6, out by 5. We had the transplant done at the University of Maryland Medical Center (UMMC). They perform hundreds of kidney transplants a year. They are so good at it now that when surgery is scheduled, you are whisked through a process that seems almost routine.

10. When surgery is planned and well executed, recovery goes quickly. While I am still recovering at home, I left the hospital two days after my kidney was removed. My wife will spend about a week in the hospital. The healing is already happening. Which leads me to…

11. With planned surgery, we didn’t have to cancel or reschedule anything. This has been on the calendar for months and we were psyched up for it.

12. Effective pain management is a blessing. With the pain under control, I was able to get out of bed sooner than I probably would have otherwise, which the doctors told me was key to getting my normal functions back on track. Pain can also affect you psychologically, so having it controlled helped me think clearly.

13. Neither my wife nor I have experienced any adverse reactions to our medications. I’ve heard that for some donors, the pain medication makes them nauseous or woozy, which diminishes the positive effects. I had no such problem.

14. Being a living donor, people treat you like a hero.  I didn’t do this for personal glory, but the recognition is nice.

15. Donors at UMMC get a great hospital room. It’s more like a hotel room, with an eighth-floor view of Baltimore outside. It sounds like a small thing, but it made a big difference for my in my recovery.

16. It’s not a traumatic injury, like a car accident or a gunshot wound. It is a tightly controlled operation which means that the recovery is faster and more certain.

17. It builds community and brings out the best in people. My wife is now a part of the transplant community, and I am part of the world of living donors. It is a fellowship from which our membership can never be revoked. Furthermore, just saying that I am an organ donor brightens people’s days and inspires them to offer cheer and support.

18. You get to meet interesting people. All of my nurses were wonderful. And the surgeons and anesthesiologists were top-notch. In addition, my wife’s surgeon turns out to be a member of our religious community. What a small world!

19. Insurance covers the costs. Kidney transplants have such an established track record as an effective treatment that most medical plans cover it to some degree. Even Medicare has provisions for transplants.

20. It’s not living with an alcoholic spouse.

21. It’s not living with an autistic or chronically ill child.

22. It’s not living with abuse.

23. It’s not living with mental illness or a neurological condition.

24. I got used to wearing the hospital gown. I can see the appeal of sun dresses.

25. I’m losing my fear of needles. So many have gone in, what’s the point (pun intended)?


If you found this interesting, you can find more on this topic here and here.
 

Finding My Way Along the Career Path

“Why don’t you go to any professional development seminars?” my boss asked me once. She wasn’t just my supervisor; she was the division head. Since our division was relatively small, I had frequent interaction with her. Rarely did she ask such a pointed question.

I mumbled some reply and moved on to another subject. But it was a valid question. I had done little in the way of career development training and it left me with a vague feeling of dissatisfaction. And now I know why.

I didn’t know what career I was in.

Back in 1994, I joined a journalism organization with the intention of becoming an environmental journalist. Think Bill McKibben. I started as a researcher but figured that, before too long, I would be able to move up to more prominent writing positions. Years went by, however, and I ended up not doing much journalism. I am partly to blame for that because I was, I now realize, ambivalent about journalism in general.

In college, I worked on my student newspaper but never took a journalism class. After graduation, I tried to write for newspapers, but never applied for a staff position. Writing held an allure for me, but pursuing journalism for its own sake–all that interviewing and beat reporting–did not spark my interest.
23

After college, I saw two paths to where I wanted to go. One was that of the environmentalist who was also a writer. The other was the journalist who specialized in the environment. I preferred the former but left myself open to the latter if the right opportunity presented itself.

I once asked an editor whether he was looking for the environmentalist writer or the specialized journalist. “Journalist,” was his answer. I was dismayed because I did not believe that journalism was the only path to being an effective writer.

In the area of nature and the environment, some of the nonfiction writers who I admire the most–Annie Dillard, David Gessner, John McPhee–do not consider themselves journalists at all.* And in spite of that–or because of that–I feel they have contributed the most to the conversation. Not needing to fit into the constraints imposed by modern-day journalism, they are free to push the boundaries.

Journalists appear to believe that they have exclusive access to the facts, and that writers who are not journalists are sloppy or unable to grasp the story. Journalists act as members of a club–the Fourth Estate and all that–and consider writers to be wannabes lingering around the fringe. (Writer Joan Didion refers to “the contempt for outsiders” in her article about journalists and the political types they report on.) Needless to say, I disagree.

To many people, the terms “journalist” and “writer” are interchangeable, which is not surprising since the majority of the current generation of writers came up through the ranks of journalists. But it’s worth asking whether that was just a historical coincidence. Today, when news is published on what one writer calls “the vaguely Soviet-seeming syndication-fed news pages,” journalism and real writing seem to be drifting further and further apart.

Frankly, journalism as a career path for a young writer is dying. The website CareerCast, in its annual Jobs Rated report, lists newspaper reporter as the number one worst job in America in 2013. “The opportunity to climb the [career] ladder disappeared,” says one reporter who was interviewed. Furthermore, according to one recent poll, only 28 percent of the public think of journalists as contributing a lot to society’s well being. This does not make for an enticing career choice.

The writing I’m interested in is less about a recitation of the facts than the finding of greater truths. To do that, writing must have a strong voice and an informed point of view. Journalistic objectivity doesn’t allow for either of those.

Gould

I’m no longer afraid to make known my lack of journalistic ambition. Journalism is not my career, and being around journalists day after day has not provided the professional development that one would expect from over 15 years on the job. I’m not entirely sure where I’m headed, but I’m sure of one path to avoid.

*McPhee, in a piece in the July 2, 2012, issue of The New Yorker, refers to himself as a “writer of long fact” and that he teaches “factual writing.” Another writer who I deeply admire, William Langewiesche, studied anthropology in college and “does not want to be viewed as a straight news reporter” according to one interview.

 [Do you think you might be in the wrong career? Take The Glenn O’Neill Test and see.]

Was It Something I Said?

We broke up by email.

“Dear band friends,” it said. “I emailed Mike yesterday to let him know that I was planning on leaving the band and that I thought we should disband. We talked it over today and we are in agreement — while we may individually (and collectively) continue to play music in various configurations, the band is no more.  –Brad”

bassman

Me – the bass player – going for it at one of our better gigs.

I was okay with it at first. There had been some signs that foretold our demise. Our drummer had quit and we were struggling to find our sound without her. We needed to either a) locate a new drummer or b) figure out a new configuration to play our songs with what we had. So, it wasn’t much of a surprise that it just wasn’t going to work out.

But then, about six months later, I found out that, with a new band name, Mike was playing again with our singer. A few months after that, Brad had joined them and they played an outdoor gig nearby.

That meant that, besides the drummer who quit, the band was back together. Except without me.

I won’t say that it didn’t sting. Because it did. And it still does.

At the outset, the break up seemed unremarkable. I’d been with the band for four years, and Mike and Brad had been playing together for about six. We’d performed a respectable number of paying gigs and recorded a CD. But these kinds of things have a life cycle, and time was beginning to take its toll. The drummer quitting was the final straw, and while we tried to limp along for a couple of months, it wasn’t working and we knew it.

At least, that’s what I thought. But now Brad, Mike, and the singer are playing together again, so there clearly is no tension or grudge held there. The drummer quit. Of all of us, I’m the only member who

  • was not consulted on the break up,
  • did not leave voluntarily, and
  • was not asked to rejoin.

I think they’re trying to tell me something.

But what? I gave all I had to give to the band. My bass playing was only getting better. I provided valuable suggestions on riffs and arrangements that were readily adopted. I supplied back-up vocals and percussion. I showed up to all the gigs. What did I do that merits being exiled? Was it something I said?

Sure, if I wanted to be blunt, I could ask. But I’ve only had a few conversations with Brad over the past year, and none with Mike. It’s not like I’ve had the opportunity to easily bring up the topic. And I don’t think it would go over well if I showed up unannounced, demanding an explanation. That would just make me look crazy.

Besides, actions speak louder than words. The message is loud and clear.

The new band will be performing in the next couple weeks. They have a different guy playing bass. They didn’t even extend me the courtesy of a personal note.

It’s Time For a Revision: An Addendum

In any given situation, behavior can be at odds with one’s feelings about the situation. In such cases, people become discontent and seek ways to make their behavior and feelings consistent with each other. The condition–known in psychology as “cognitive dissonance”–is solved by either changing one’s behavior or changing one’s attitude towards it. Frequently, the chosen response is to adjust one’s attitude rather than trying to change one’s circumstances.

People have cognitive dissonance in connection with a great many things because, sadly, things are not always as we wish them to be.  We rationalize and make excuses, always hoping that if we keep re-framing, we can set things right. But many times, the situation is what is wrong, so that is what must change.
the Door

Recently, I came to realize that I’ve had cognitive dissonance  in regard to my career, and decided that it was time to do something about it.

Yet I have continued to wonder why it has taken me this long to seek out alternatives, and I think that maybe I’ve found an answer. A classic psychological study demonstrated that the more invested one feels in a situation, the less likely one is to abandon it and the more likely one is to try to change one’s attitude to fit. Such efforts to relieve the cognitive dissonance are not always successful. “It’s worthwhile, and a bit alarming, to ask how many…projects we fail to abandon – bad jobs, bad marriages, bad wars – because we think we’ve invested too much to turn back,” notes Oliver Burkeman, who writes about social psychology for The Guardian.

I’ve spent more than 15 years pursuing a career that I thought would bring the satisfaction of making a difference in the world. It hasn’t, and no amount of attitude adjustment is going to make it so. I had thought I’d invested too much to turn back, but my lay-off forced me to confront the absurdity of sticking with it. I see that clearly now.

I can close the door on this stage of my life. I’m ready to open a new one.