Friday, February 22, 2019

One number determines who gets an organ transplant, and it's horribly unfair - Chicago Tribune

We have a liver selection meeting every Wednesday to consider which patients will get transplants. Each patient is listed by name, age, weight, diagnosis and MELD score - a number, based entirely on lab values, that predicts how bad their liver is and correlates with how likely they are to die waiting for a transplant. A score of 15 is where we start to consider transplantation, and 40 means a 90 percent chance of dying within three months.

Scanning the list, I noticed with discomfort that the patients at the top, with a MELD of 35 or more, had mostly the same diagnoses: alcoholic liver disease; nonalcoholic steatohepatitis, or NASH, a consequence of obesity leading to fatty liver; and an occasional hepatitis C, a virus that was once the most common indication for liver transplant but now is being cured. This was not surprising. These diagnoses make up greater than 60 percent of the national waitlist, and that number continues to grow.

What was making me uncomfortable was that Nate, a medical student on our service, was sitting behind me.

Nate was diagnosed in college with primary sclerosing cholangitis, a rare disease that destroys the liver and leads to irrepressible itching, recurrent infections, possible liver cancer and near-certain death unless a liver transplant is done in time. The problem is, Nate's MELD score remained in the mid-20s - too low to get a liver.

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Tuesday, February 19, 2019

Five Things I Wish I’d Known Before My Chronic Illness - The New York Times

Seven Thanksgivings ago, I got sick and I never got better.

What I thought was food poisoning turned out to be Crohn's disease, a form of inflammatory bowel disease (IBD) that doesn't have a cure. It fools my immune system into attacking my digestive system, resulting in what I can only describe as the attempted birth of my intestines through my butthole. It's a cruel and often debilitating disease.

Since that first hospital stay, I've had colonoscopies, biopsies, CT scans, X-rays, blood and stool tests, enemas, suppositories, rectal foams, antiemetics, antidiarrheals, antivirals, antibiotics, anti-inflammatories, opiates, steroids, immunoglobulin, biologics and three fecal transplants (if you want to hear a story about my 9-year-old poop donor and a blender, find me on Twitter).

My disease is managed now thanks to an expensive drug called infliximab, but the future is unpredictable. IBD works in patterns of flares and remissions, and little is known about what causes either.

When I was diagnosed, I didn't know how much my life would change. There's no conversation about that foggy space between the common cold and terminal cancer, where illness won't go away but won't kill you, so none of us know what "chronic illness" means until we're thrown into being sick forever.

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