Saturday, June 22, 2013

Worth Fighting For

What's on my mind, Facebook? Are you sure you want to know?

Warning: This is going to be a novella.

My husband is fat. He's always been big but in recent years, he has become "morbidly obese". We know this. We're not stupid. We're aware of the prejudices and assumptions that go along with being fat.
We're aware of the health risks. It's been an ongoing battle our entire marriage to help Charlie make choices for his health when he'd rather put the focus on what he can do for his family.
His weight has fluctuated 50 lbs or so between 350 and 400.
Last year he made the decision to fight to lose weight. It's not easy for a 50+ year old man to change a lifetime of habits... but he's lost 50 pounds this last year and for the first time since his diagnosis of diabetes, he's conquered the sugar beast and maintains a healthy glucose level.
He's trying to exercise but is limited by joint pain. Still doesn't stop him from doing anything and everything he is able to be active.
He gave his health for his family... working 80+ hour weeks for 20 years, doing far more than a person of his job description should have to do.
Every decision he's made has been based on what's best for his family.
Food has been his comfort and his enemy. An addiction like any other and one he's accepted can strengthen or kill him based on his choice alone.
He understand the one thing his family needs more than anything is for him to be well. His precious grandchildren have given him the motivation to conquer the food beast.
But his body has taken the limit it can take.
His joints have been giving under the weight for years. He's battled infections in places it's embarrassing to discuss. Congestive heart failure led to what we now know is more than 100lbs of edema. The edema has worsened the infections and created more. It's also put so much pressure on his bladder he couldn't empty it on his own. That plus far more diuretic medication than is reasonable has led to kidney failure.
His primary physicians and the nurses have fought for him. At Summerville Medical Center, a trio of nurses brought Charlie back from the very edge of death.They've taken the time to hear about his determination to do "Whatever it takes" to be well.
Earlier this week, we dealt with a urologist who treated Charlie so badly, the nurses were shocked. He simply acted as if this fat, old man was a waste of his time and told me to my face there was nothing to be done for him.
The next morning, an ICU nurse did what the urologist said couldn't be done.
Between that and 30 hours of dialysis, the pressure is off and his kidneys are functioning. They are strained, yes, but they are working overtime. From Tuesday evening to this morning, he'd lost 30 lbs of edema.
At the current rate, he'll be back to his pre-illness weight in a few days. Probably less than that as we've not considered the fact he hasn't eaten a full meal on 6 weeks and is losing, if not fat, lean muscle.
He slept for the first time all week... possibly better than he has for the last 6 weeks. He woke this afternoon lucid and the Charlie we know and love.

That's when Becka and Kalynn's Dad Steve came by.
I took that opportunity to go speak to Charlie's cardiologist.
This is the conversation that transpired:
Me: Hi Dr. Coker. I'm Charlie Feathers wife. I wanted to ask you a question.
Him: Yes?
Me: When Charlie was hospitalized last month, we were told he needed and ICD. I was...
Him: (cutting me off) Ms. Feathers, an ICD should be at the bottom of a very long list of your concerns. His heart is failing, he's still in a-fib, his kidneys have failed. He's five hundr... *looks at chart* four hundred pounds. To be honest your husband has run his course. The only thing an ICD does is prevent sudden cardiac death. It won't make him better.
Me: Yes sir, I understand that, I have been doing extensive resear...
Him: Blah blah condescension... all we can do is try to keep him alive... blah blah... an ICD won't make him bett...
Me: (cutting him off) Yes sir, I understand.
I turned and walked away. I found Charlie's nurse and told her what happened. I then went into Charlie's room and asked Becka and Steve to come with me. We went looking for Dr. Coker. We found him coming out of the staff bathroom.
Him: I'm just on the way to see your husband. Why don't you come with me.
*Walking into Charlie's room all smiles and upbeat tone*
How we feeling today Mr. Feathers? *looks up at monitors*
Me: Excuse me. Before we get to that. *Gesturing to Becka and Steve* This is my daughter and brother.
Him: So, how's the urine outpu...
Me: *cutting him off* You are fired. Please leave.
Him: I understa...
Me: You. Are. Fired. Please. Leave.
Him: Okay then.

Charlie already has a new cardiologist. One who has seen him, spoken with him and who took the time to call me and assure me he will treat Charlie as a man fighting to live a long life... not just to survive. He also assured me he will not treat Charlie differently because of his size and he believes Charlie is fighting to change it.

I usually keep my mouth shut about fat jokes, especially on Twitter. But this is no joke. This is a story of two medical specialists who, in large part because of Charlie's current size, decided he is less than worthy of their effort, a reasonable quality of treatment or even quality of life.

That's no fat joke.

This is not about me... but I'm tired. It's been hard taking care of Charlie the last several weeks. It's the choice I made and I'd make it again in a moment. But now I'm not only fighting with (not so much against anymore) him for his health, I have to fight the mistreatment of an old fat man whose biggest crime is being a sick old fat man.

There are administrators from 2 hospitals to track down and talk to. A CEO of a hospital system. More doctors... and possibly someone who can help me address a discriminatory neglect of care.

And I promise you, it will be done.

And next time someone decides to make a comment about the value of or quality of life of a fat person... I will NOT hold my tongue.