You Can’t Take it With You

What follows is a not a philosophical meandering on wealth. It’s way more important than money. We’re talking about my medical records.

An odd situation occurred with my internist nearly two years ago. After nine years as his patient, I found out he was actually “renting a chair” (in beauty salon parlance). From his demeanor, expertise, and superior skill as a physician, I had always believed he was the senior partner in the group. The other doctors deferred to him and the staff adored him.

And, for good reason. He is an excellent internist. Once, I was admitted for a suspected second spontaneous coronary artery dissection (SCAD). My internist is the one who walked into my hospital room, lifted a plain old chest x-ray to the light, and said: “her sternum has fractures up and down it.” No WONDER I’d been hurting for more than a year.

But on a random day in 2010, I called for a non-urgent appointment and was told he’d taken an indefinite leave of absence. I panicked. I cried. I could not believe it. The man who actually understood the complete picture of my cardiovascular, pulmonary, neurological, gastro, and gynecological health was gone. Literally vanished. They would not tell me what happened or where he went. (They would, however, schedule me with one of their docs. I declined.)

I slogged onward. Figured I’d just see my specialists when required and hope for the best. I learned specialists are like your best girlfriends when you’re out for wine on a Thursday night. A little bit naughty! They dished. There was no personal crisis. My internist was the type that didn’t want to be “the boss.” He wanted to care for patients, admirably enough. So, when the last practice had decided to go concierge and he didn’t want to, it was “here’s your hat, what’s your hurry.” Out. On the street. No patients, and no legal means to contact us.

l felt cheated, and was angry. But the word from the gastro was confirmed by the pulmonologist. My doctor was well. His wife was well. He had served his time in purgatory and landed in a practice run by our hospital health care system. Phew.

In anticipation of a sinus infection or the like, I requested my records be transferred. Months passed, I stayed well, so finally decided I better have a “let’s get reacquainted” visit. It was an awkward appointment … like being trapped in an elevator with someone you dated at the beach, but who never called in September. Even worse, my medical records had never arrived.

Ever since my days as a Navy dependent, my medical records have been a source of stress. In the late 1970s, my chart for years birth through 12 was sent to a desert installation and incinerated by some administrative stepchild of BUPERS. Still to this day, it bothers me. No record of my birth in the Philippines. Nothing about my childhood asthma. My severed finger? Just family folklore.

So in this lifetime, I take the bull by the horns. I walk into the former office and state that my records request was never honored, and I’d like them NOW. (Smile.)

I write my name on a post-it for the receptionist, she goes to the files, and reappears with my chart. It is really ugly. The chart is exploding with the inner subcharts of pockets and pages bursting forth. Standard issue brown. I’m thinking, “That’s mine. That’s my chart.” The manager joined the conversation, saying “I see the request, but it was never done. We can make you a copy.”

I stood staring at it, thinking, “That is MY chart. My story is in there. It has nothing to do with these people.” (Technically speaking, the chart belongs to my doctor at his new office.) I thought back to when I had “sticky note status” at the scheduling desk. My name on that sticky note posted on the wall meant I went to the head of the line. I was special, a rare case of SCAD. It didn’t matter if I was actually calling about sinus trouble, I was on the top of the heap.

But no longer.

“You have to pay for copies.” The absurdity of it, snapped me into action. “To transfer to another doctor, it should be free.” No, she said, that’s not how we do it.

“I’ll pay you the fee, but just give me the chart” was my bold counter offer. The office manager actually went around the corner and asked the doctor! Of course, the answer was no. “It belongs to Dr. G. He was your doctor’s employer.”

I just couldn’t stop looking at that sorry, brown, floppy chart, dripping with reports and notes. I surrendered and paid. At that point, the most ridiculous words of the entire exchange were uttered. Clearly dreading the task, the receptionist said, “How much of it do you want?”

Ah, let me think. “All of it.”

Oh, and a follow-up: the former office called today and said they’d faxed it to my doctor.

I didn’t get my medical records after all.

Time is Muscle

In the midst of heart attack symptoms, people wait, on average, four hours to go to the hospital. Whether they are experiencing full-blown “Hollywood heart attacks” of anvil-on-the-chest pressure with arm pain, or more ambiguous symptoms – indigestion, trouble breathing, fatigue – delaying treatment more than 60 minutes causes irreversible damage to the heart. It dies. Heart muscle dies.

So what is up with human beings? Why do we do this to ourselves? Women, in particular … why do we pull a June Cleaver and make sure the lawn is scissor-cut, the underwear ironed, and a week’s worth of meals is in the freezer BEFORE we dial 9-1-1?

To answer these questions, the Yale Heart Study needs participants. Are you one of the 1.2 million Americans each year who’ve had a heart attack? Or, perhaps you know someone or a friend of someone who has? Please direct him or her to http://heartstudy.yale.edu.

The goal of the Yale Heart Study is fundamental: to help people get care as quickly as possible when they are having heart attack symptoms. The study offers an online, self-tailoring survey to examine people’s behavioral processes. The data collected will be used to develop strategies to ensure people experiencing heart attack symptoms seek appropriate care fast! In a nutshell: An emergency is an emergency. Act like it!

Participating in the Yale Heart Study is simple. I’ve completed the survey, and although it was a challenging walk down memory lane (with abundant potholes) I felt relief and pride when I was finished. Depending on your personal story, it takes about 30 minutes to an hour to complete. Participation is completely anonymous. Go to http://heartstudy.yale.edu.

The study has been approved by the Yale University Institutional Review Board and is funded by the National Institutes of Health. The Primary Investigator of the Yale Heart Study is Angelo A. Alonzo, PhD. If you have any questions, contact the heart.study@yale.edu.

Just think: best case, you help save lives by getting heart attack patients to the hospital quicker. Worst case, you can talk about “studying” at Yale! It’s a win-win!

Heart With Muscle Damage and a Blocked Artery

Figure A shows a heart with dead heart muscle caused by a heart attack. Figure B is a cross-section of a coronary artery with plaque buildup and a blood clot. Source: NHLBI/NIH

Stitch by Stitch

At the Red Dress Awards last month, I felt like my life was on reel-to-reel playing in the back of my mind. So many things I especially enjoy were part of those few days.

First of all, I got to spend time with my best friend, who happens to be my husband, Marc. We took the train from Alexandria, Va., to New York’s Penn Station. I love to watch the scenery of America, the unpolished, not-so-pretty parts of our nation and try to imagine they feel special that someone has noticed their rust, graffiti, and air dried laundry along the Amtrak rails. Those lives and stories are important too. Hopefully, dreams are born and grow there, despite reality.

On the train, we ate our boxed snacks and read the paper. My best friend is very funny, so even when he was on work calls between the clattering rail cars talking to a city employee at the permit office, it was a challenge to make him laugh. Marc’s fun to tease. He’s Irish, and looks it, so people give him a lot of leeway — even when he is being “persuasive” at high volume. (You have to be pretty loud to be heard through a door over the sound of a running railway car.)

When we arrived at Penn Station, the first person we met was a toy salesman. No lie. Where but in New York are you going to meet a toy salesman in 2012? We have his card, and know all about his marvelous toy. Soon after, my husband’s air-headed wife said, “where is the big clock?” That, of course, would be at GRAND CENTRAL Station. But one of the funniest things I’ve seen in years awaited in the women’s restroom. As you entered, on a sizable placard was posted: “Guidelines for Use.” And sure enough, clearly spelled out were the rules of the road and protocol for using a bathroom in Penn Station. Again … only in New York.

We headed off to a dress fitting and into the world of my childhood dreams: the Garment District. My mother taught me to sew when I was 9 or 10. She was an expert seamstress and won many 4-H awards growing up in Indiana. She was a taskmaster, and I’m glad. I learned the “right” way and never was allowed to be lazy. “Rip it out.” That was her mantra and that is what I did. It was a sound philosophy in the lines of “do it right, or don’t do it at all.” I also benefited from the skills of my grandfather. He was a dairy farmer, but one of the ways he worked to make ends meet was as a welder. During my summer visits at the farm, I would always have a sewing project or two underway, and he advised me on economical use of material in my pattern layouts. It was just as on sheet metal for him. He had a good eye and no tolerance for waste. Geneva, a delightful neighbor lady who was my second grandmother, also would take great interest in my projects. I remember her helping me with ric-rac trim on a sundress and button holing.

So on February 14, as Marc and I walked from Penn Station to the showroom of Theia designer, Don O’Neill, I slowed my steps. Nearly every store front we passed was filled with bolts of fabric. Yard after yard. Embellished or not. Every color and hue beyond the rainbow. It was magical. At one corner, I had to stop and take a picture. An enormous needle and button formed a piece of urban art. And then we were there … in the heart of New York’s fashion district.

With time to kill, we bought lunch. Marc presented me with a “model’s lunch” — a sample cup (the size of a child’s pain reliever dosing cup) of chili. It had one kidney bean and an oyster cracker he had carefully placed on top. We took the funniest picture of me preparing to dig into my morsel of food. Our actual lunch was delicious, and we ate outside between the bike lane and pedestrian traffic on the street. Once in the design studio, I again was transported. Very mod in design, the place was abuzz with models being fitted for O’Neill’s first Fashion Week runway show. I tried on my dress and followed our lovely guide to what I thought was a seamstress station for someone to take up the hem. Instead, I was led into the office of the designer himself. I thought I had died. I’d read articles and watched video on the Internet, yet there he was complaining that my shoes weren’t tall enough and sitting down on the floor to pin my hem. He was a dream. And he’s Irish! (Marc was beside himself talking about Irish cousins, plus I’m a Kelly.)

It truly was the best Valentine’s Day ever. We bought half-price tickets to a Broadway show. I asked a cop for a pizza recommendation and we ate delicious pie at a hole-in-the wall called Famous Ray’s. Back at Hudson Hotel, we sat in the Library, a bar with over-sized portraits of Holstein’s — again in tribute to my youth. In addition to sewing, I’ve always loved cows with whom I shared a special bond out on the farm in Indiana. I’d use my Kodak Instamatic camera, bought with Cheerios premiums, to take picture after picture of cows, generally Herefords.

Wednesday, February 15th, the day of the awards was a blur. An over-heated hotel room plus nerves yielded a massive migraine. Marc surprised me by having my childhood friend Susie arrive for the awards. We grabbed an early meal, dressed and prepared for something you just CAN’T prepare for: speaking to a crowd at the Allen Room, home of Jazz at Lincoln Center. It was hard to be in the front row at that moment, apart from my two best friends, not to mention my two loves, Ian and Evan, at home with their grandmother. But what touched the evening like the hand of God was a singer, Javier Colon.

“And I’ll give you all my pieces broken
In your hands, there’s nothing that you can’t fix
My heart is frayed, my scars are open
So put me back together now, stitch by stitch”

Until he sang those words, I’d had two days free from being a heart disease patient. Odd as is sounds, I was in New York having fun. I was living the life we all wish we could each day, completely carefree. And then he said it. He described my heart and my loves, all in one verse. Thank God for my wonderful husband, cardiologist, and surgeon.

“Put me back together now, stitch by stitch.” It took almost nine years and the efforts of family, friends, health care professionals, and strangers. But, I think I’m finally mended.

Thank you Marc. Thank you WomenHeart. Thank you Mayo Clinic. Thank you Woman’s Day Magazine. Thank you.