Monthly Archives: April 2016

Practicalities of the Chylothorax Diet

fatfreeThe best thing about being forced to eat a fat-free diet for chylothorax is that it is always temporary.

The worst thing about being forced to eat a fat-free diet for chylothorax is everything else.

If you are coming to this page from a web search for “chylothorax diet,” then you already know that you — or the person you’re caring for – has a leaking thoracic duct in the chest leaking a fluid called chyle, largely made up of dietary fat. If left untreated, chyle could fill the chest cavity and make it very hard to breathe. Because thoracic ducts usually heal on their own, simply waiting for that to happen is often enough treatment. While you wait, your diet has to be fat-free.

When my 8 year old daughter had to follow this diet after cardiac surgery, we were flummoxed. So many foods have a gram of fat in them — too little to be bothersome to almost any other diet, but twice as much as was allowable for her at the time. As we had before with other difficult, medically-required restrictive diets, we dug deep and did a lot of research. Here are some tips that I hope will help others manage this crummy, unpleasant, high-stakes diet. Continue Reading…

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Mommy, I Ate Fat

riceccakesThe day my older daughter was born, I had been expecting a son. When my husband looked at the wriggling pink mass being lifted from between my legs, I called out to him, “Is it my little boy?”

“It’s a girl,” he said. “It’s a daughter.”

Lying there, on that bed, I realized two things at once: firstly, how deeply I must have been afraid of having daughters; and secondly, how happy I was to have one.

Three years later, I had another daughter after another pregnancy of being certain the child I was carrying was a boy. We did no gender-checking ultrasound with either child, but my intuition, I realize, must have remained blocked by that fear of raising girls. How, I wondered, can I make them less messed-up than me?  Continue Reading…

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What Wasn’t

calendardatesSome days, I selfishly look back at all the time we waited for an answer to my daughter Sammi’s health challenges and see only how it wrecked my image of what motherhood should be.

I was newly a mother of two when a doctor – a kind doctor, a thoughtful doctor – told me that my new daughter would almost certainly end up in the hospital with every respiratory infection she got. Not a great idea, he said about twice-a-week daycare. Probably not, he said about baby-and-parent music classes. No, I don’t think so, was his answer to my hopeful questions about baby swimming, a smaller daycare, a playgroup. After two hospitalizations in her first five months, I believed him.

Through that first winter watched through front windows into an empty courtyard or through car windows into big sister’s preschool, my new daughter and I eyed the world with suspicion: me because it contained too many germs and her because nothing in it made her feel quite right. There was no sleep, no break, no time apart for the two of us to learn the beauty of missing each other and being reunited. There was just us, with the world outside the window unavailable.

The winter turned into years, isolated and treading water. Continue Reading…

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Two Years Later, Fury

twoyears

In a chair for the first time after her surgery

Yesterday was the two-year anniversary of the surgery that changed Sammi’s life.

This morning, in an effort to remember a particular detail of that time, I logged into the hospital’s patient information system. I clicked aimlessly, seeing everything with the eyes of experience and after-the-fact understanding. All these test results — why didn’t I read them in detail back then when they could have done something more than remind me of how late I put my research skills to work?

The real answer is that I didn’t know how to access charts, back then. They weren’t online. They weren’t sent to us by mail. All we got was the occasional placating phone call. Oh, and a stack of bills.

Now here, in the charts, are all the comments and clues that make sense in retrospect. Like re-reading a mystery after I already know who the killer was, I am seeing the telltale signs in notes on test results and procedures: muscle visible in her esophagus, tonsils visible on a chest x-ray, no mention of her abnormal aortic arch on that first diagnostic endoscopy. The information was there for anyone to find: here is why she is always sick, here is why she cannot eat, here is why no doctor can explain her idiopathic results.

I am angry. I am furious. Continue Reading…

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The Worst Diet Yet

emptyplateWhen we brought our daughter Sammi home from her week-long stay in the hospital following cardiac surgery, we had an extra challenge to face. When we planned the surgery, we’d known that once we got her home (if we got her home), she’d need to rest. We’d expected that she’d be tired, that she’d be loopy from the medication. What we hadn’t expected was that she’d be one of the percentage of patients who undergo similar surgeries and end up with a complication called chylothorax.

Chylothorax is a long, ugly word for a leak in a thoracic duct. The thoracic ducts are part of the body’s lymphatic system, located mostly in the chest, and are responsible for — among other things — the processing of about 60% of the body’s dietary fat, which flows through them. Because the thoracic duct is located alongside the aorta, Sammi’s surgeon warned us that they might nick it with an instrument during surgery. “If that happens,” he said, “it usually heals on its own, but she might have to follow a special diet for a while.”

I barely listened. Special diet? I’d done special diets over and over again since Sammi was a baby. A diet would be no big deal. Also: it might not even happen! I did no research on chylothorax before Sammi’s surgery.

And then she had it. In clearing layers of scar tissue from the side of her esophagus, the surgeon had met with a thoracic duct, and the damage was done.

The diet, we learned, was fat-free. It didn’t mean fat-free the way that the weight-loss diets of the 80s meant “fat-free” — many of those foods, we learned, had a gram or two of fat. In a normal person with a functioning thoracic system, that’s close enough to fat-free. In someone with chylothorax, a gram of fat here and there would eventually leak out of her thoracic ducts and fill her chest with a thick, milky substance that had nowhere to go. Eventually, without more surgery, she’d drown from the inside.

Drown in fat. Continue Reading…

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