His Turban Was Magnificent

His turban was magnificent, a rich bluish purple. He came into my wife’s room and introduced himself.

“I am a neurologist,” he said, “and I would be happy to treat your wife, if it weren’t for the pregnancy.”

She had just recovered from a seizure less than an hour before. She had the worst headache anyone could ever imagine. She was nauseated and her vision and hearing were impaired. We didn’t fully know what was wrong yet, but something clearly was.

And our second child was at risk. Her pregnancy was only 33 weeks along, but the seizures were a threat to the growing baby.

I’d rushed to the hospital, seen the seizure, knew it was a complicated situation. Neurology was not something I had anticipated needing. Someone had to make a decision, and had to make it fast.

“It’s just that…since you are pregnant…I think it would be better to transfer to you a facility with more experience,” he said. I wasn’t sure how to feel in the moment. His warmth and composure was reassuring; his recommendation that she be moved made logical sense but was unsettling.

My wife said “My head is killing me; if you are going to make a decision, make it quick.”

It was done then. The neonatal team would perform an emergency C-section. My wife, still sedated, would be flown by med-evac helicopter to Baltimore, a city I knew almost nothing about.

The ICU doctor–also Indian–would give me a warm hug and tell me it would be alright in the end. And I got in the car with a friend and drove into the night.

He was right, the ICU physician. Things are alright, 16 years later.

But I never saw the neurologist with the turban again.

Non-Joggers of the World Take Heart

Ah-ha. I knew it!

Jogging for fitness isn’t so good for you after all.runner

To recap: the dominant public narrative at the moment is that if some running is good, more is better. As I have discussed before, this had led to an explosion of half-marathons, marathons, and ultra-marathons. And to what end?

Nothing, apparently. A new study from researchers in Denmark has found that while some exercise is good, more is actually worse. According to the Los Angeles Times, “high-intensity, high-mileage joggers die at the same rate as channel-surfing couch potatoes.”

I’m willing to bet that obsessive jogging and/or running has more to do with competitiveness and perceived self-worth than any actual fitness benefits.

Personally, I take my cues from the Chinese. What do they do for exercise? They get outside and walk every day. No fancy running shoes. No strenuous uphill runs. Just walking. It works for me.

Run Baby Run

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There are decals that I have noticed recently on cars in my area. They seem to be everywhere. For a long time I wondered what they meant because they simply are some numbers. Eventually, I figured it out.

26.2.

The number of miles in a marathon.

It seems that marathons are having their day.

As I have said before, I have a certain amount of ambivalence about exercise. I do what I need to do and no more. Marathons, to me, seem like way more than what’s necessary. So why are they so popular?

And when a “simple” marathon is not enough, how about one of these:

Antarctica Marathon — Run 26.2 miles on the coldest continent on Earth.

Death Valley Ultramarathon — Run (or walk) 135 miles in the hottest, driest place on Earth.

I don’t know whether to admire these people or feel sorry for them.

In another context, this would be considered self-flagellation.  And people generally think of self-flagellation as weird and vaguely fetishistic.

So why would the Antarctica Marathon attract 110 people in 60 days for its inaugural run? And why are there are 94 runners in the article about the Death Valley race?

What’s really going on here?0923130719 - Copy

I don’t buy into what the organizer of the Antarctic race says: “These are people who take the reins and ride life hard. They’re not afraid to take some risk and live life to the fullest.”

Personally, I don’t shy away from living life to the fullest. I’ve written for publication. I’ve played music in a band in front of live audiences. I’ve donated a kidney.

But I think there is something unhealthy about all this so-called physical fitness. I don’t think of these marathon exploits as living life to the fullest. Rather, I think it’s madness.

Maybe that’s just me.

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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.

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.