Tag Archive for disability

Failure to Thrive

July 31, 2012 Blog 4 comments

“Mom, I think I’m immortal.” I told her as I sat on the toilet. This made perfect sense in my 10 year old mind. Why wouldn’t it? Death seems so silly to a ten year old. What, you actually stop living? That’s crazy talk!

“Why?” she said through furrowed eyebrows.

“Because I can’t die!” I proudly proclaimed. How does she not get it? I’ve never died before, so why would I ever die?

“Everybody dies eventually, Raul.”

“Not me!”

***

Failure to thrive, that’s what the doctor called it. It sounds like being kicked out of college, like I got too many F’s or something. This was completely foreign to me, what the hell did he mean failure to thrive?

“If he’s not tolerating his food, then you really need to bring him in. He’s having too much reflux and it’s affecting his ability to eat. We’re really skirting the line with him.” I’d been having trouble eating for about a month. I would feel the liquid come up from my stomach, coat my esophagus and make it’s entrance into my airway. Sometimes it felt cold, other times it burned. I’d cough, choke and get this pain in my throat. But I couldn’t stop eating, I knew that would only make everything worse. I’d lose weight and weaken my immune system.

So I forced myself to eat. Everyday, I’d wake up with a dry throat, dry mouth and stare at the wall. How much longer can I do this? How long until my body just gives in?

It’s weird, I’ve always had health problems, but I was either too young to realize how serious they were or they came and went too quickly for me to care or think about them too much. I had trouble eating when I was 12, that’s when I had my feeding tube put in. But I don’t remember much from it, just the starchy taste of ensure and warm release of morphine after the surgery.

But this time… this time I knew what was happening and it scared me. I’d been to the ER fives times at that point, I know because I started collecting the wristbands. They’re still hanging in my room. Out of five times I was hospitalized three. Or was it two? I don’t even remember. All I know is that they kept sending me home because they didn’t know what to do. I would get these humongous mucus plugs that would clog around the trache. When we changed it, it would come out dry and bloody. A few times it even had crusted food in it.

They took me in at the hospital and ran one test. They tried to run more, but the weekend was coming up and all the departments were closing. So they scheduled me for an outpatient test and sent me on my way.

“Not good for you to stay in the hospital if we can’t do anything for you.” said the Doctor.

The outpatient test was the very next Tuesday. They wanted to check how fast my stomach was emptying. I googled it before hand to learn more about it. They do the test to check for delayed stomach emptying, this makes the stomach keep food in it longer, making food go up through the stomach. To do the test, they put radioactive material into my stomach and point a geiger counter at it. They then measure the rate at which the material disappears from the screen. They put the screen right in front of me and I could tell after a an hour that was what’s wrong.

The procedure to fix it is simple, make the feeding tube longer so that it goes into the beginning of my small intestine in addition to my stomach. I wasn’t extremely worried about that, though it did suck. It was how my problems were escalating. From not walking to not breathing to my stomach slowing down.

This problem represents a worsening of my condition, how long until other stuff gets worse? How long until my heart starts giving out? How long until I stop being able to do the things I love? I don’t know. The more I thought about it, the more I realized that, “Holy shit, I’m going to die sooner than most”. It’s strange because I knew that before, but it never really hit home. And now it did. It left me in complete shock for a while. I would play video games instead of writing. I stopped listening to music. I would stare at my computer screen with a total lack of interest. Days were foggy and boring. I didn’t know who I was anymore.

I want to do so much, it’s not fair.

And that’s when I caught myself. The self pity was too much. I can’t live like that. I don’t want to be that person. That person that wallows in self pity and wastes his life. That’s not how I’m built and I promised myself a long time ago that that’s not who I’ll become.

***

“Raul, everybody dies eventually. You’re no exception, but don’t worry, you’re not going to die for a long time.”

“Hmm…” I thought about it for a second, “Okay!” I didn’t really believe her.

On Managed Care — 3 — Upchuck

June 19, 2012 Blog 4 comments

“If you want to continue seeing any of your doctors at UCSD, you’ll have to switch insurance from Molina to HealthNet.”

“Uh… what?” My nurse asked the receptionist at the Doctor’s office.

“Unfortunately, UCSD doesn’t take Molina. All you have to do is call Medi-CAL and tell them that you want to switch providers*”

I was at the doctor because I’ve been having reflux issues. Whenever I eat, I can feel the food go from my stomach up to my chest. Normally, this isn’t too much of a problem for people. All you have to do is take an antacid and you’re good to go, but, because I eat through my stomach and my food is completely liquid, this poses a huge health risk. The liquid travels up my stomach, through my chest and into my lungs, giving me breathing problems and really bad chest pains. We had agreed with the doctor that I was going to go on an antacid twice a day. It wasn’t going to solve the problem, but it would hold me over until they can take me into surgery and tie my stomach up. It’s not exactly the most ideal solution, but it’s better than what I’m going through right now.

“Thank you for calling Medi-Cal, you’ve reached the department with-the-really-long-name-I-can’t-remember. My name is Daisy, how can I help you?”

“Yes, I’d like to switch my provider from Molina to Healthnet.”

“Sure no problem, it will take 15-45 days and you will receive a letter in the mail notifying you of this action.” I may or may not have abridged that conversation to cut out the part where we were put on hold for 20 minutes. And the part where she made everything more complicated than it had to be.

In the meantime, I had to get my antacid. At least I had that to hold me over, “Oh… Your insurance is not approving it for twice a day. They are only approving it for once a day.”

“Do you know why? ” My nurse asked the pharmacist.

“No, I’m afraid not.”

“What else can we do?”

“You can always pay for it out of pocket.”

“And how much is that?”

“$265” I could hear her wincing on the phone.

I looked at my nurse and shook my head as fast as I could, “Oh, nevermind then. Thank you.”

I couldn’t get my medicine and my reflux was only getting worse. Eating became a chore instead of something that was fast and easy. We ultimately found some antacid that my brother had and used that, but it wasn’t enough. I could still feel food coming up through my airway as if it wanted to suffocate me. I needed to do something lest I end up back in the hospital. So I did, I brought out an old stand-by: the feeding pump.

The feeding pump feeds me at a set rate for a set amount of time. The problem with it is that it’s extremely sloooooooooooow. Like, a turtle running a marathon. Sure, it’ll eventually get there, but everyone might be dead by the time it does. What used to take me 5 minutes now takes all day. If I want to go anywhere I have to meticulously plan my feeding schedule. How long will I be gone? Will it cut in to my eating time? If so, how do I compensate for it? It’s like a fucking algebra problem just to do anything fun.*

As of right now, we’re waiting for the insurance to switch so that the doctor can run a test to see how bad the reflux is. After that, there’s a very good chance that I’ll go into surgery and have the doctors tie my stomach up. Hopefully HealthNet approves it, but I have a sneaking suspicion that it’ll be a battle. The government keeps trying to say that managed care will save money. They’re right, but not because it’s a good program. It’ll save money by denying needed medical care to those that don’t have the energy or health to argue with them about everything. And what they don’t want you to know… What they will never ever say is that, in the end, it’ll save money because people will die.

*Medi-Cal has contracted out Molina and HealthNet

*I may consider drawing up an equation for it, I do kind of love algebra.

One

June 12, 2012 Blog No comments

I’ve been in the hospital three times in the last three weeks. When I used to go as a kid, my parents had all the control. They, of course, consulted with me on every decision, but they always had final say. Now, when I go, I have final say on everything. And I’m slowly realizing how much doctors and nurses underestimate me. How, after they take one look at me, they make a laundry list of assumptions: I can’t talk, therefore my parents make all the decisions. I can’t move, so obviously I can’t feel anything. I look feeble, so I am.

Every time I go it’s a struggle to have them take me seriously. I can see it in their faces. They try to pretend that they are listening but, their actions betray them.

“How does he usually get his feedings?”

“I take 300ml 4-6 times a day with 100ml of water.” They nod along very slowly and then turn right back to whoever is with me as soon as I finish talking. It’s as if nothing I said made any sense. I’m just a crippled kid that’s too sick to have any semblance of a rational thought.

“Does he get bed sores?”

“Can he be off the ventilator?”

“How does he get transferred?”

Always “he”, never “you”. They don’t act like I’m human.

***

On my second hospital visit, the ER doctors ordered my very first CT scan. I’d never done one before, so I had no idea what to expect.

“Can I stay with him?” asked my dad as the doctors wheeled me into the room. There was a large tube shaped machine in center of the room. It looked like something out of a Sci-fi series. I half expected to get transported to Mars where an alien would tell me the meaning of life.*

“No, you can wait outside.” said the nurse.

“But you won’t be able to understand him.”

“Don’t worry, we’ll take good care of him.” Apparently, it doesn’t matter that they can’t understand what I’m saying. As long as they can see my vitals, everything is fine. Never mind that I know more about myself than they do or that I can tell them what’s going on without them having to waste time figuring out if something is wrong. That doesn’t matter to them. They obviously know better than me.

So my dad went outside and they slowly wheeled me under the alien transportation machine while being very careful not to pull on my IV or trach. The machine whirred to life and made lots of whiny noises that gave me hope for my alien theory. I watched it flash and spin and wondered if this was all there was to the procedure. It wasn’t.

I saw one of the nurses walk up next to me, grab my IV and inject what felt like a very hot liquid into my vein.

Oh, you’re not going to tell me what that was? Thank you.

He casually walked away as the liquid coursed through my arm and spread to my chest. The initial hotness of it turned to a searing burn. It moved from my chest to my other arm and pretty soon engulfed my whole body.

I imagine this is what being on fire feels like.

My chest tightened, my breathing got shallower and my heart started racing. Calling the nurse would have been useless because she couldn’t hear me anyway. And even if she did hear me, she wouldn’t be able to understand me. I wanted to freak out. I wanted to scream, “I think I’m dying here guys!”. But that wouldn’t have helped anyone.*

“Are you okay, honey?” The other nurses’ voice blared through the intercom.

“Uh… no.”

“Okay, you’re doing great, honey. We’re almost done.”

You clearly understood exactly what I said. I get snarky when my life is in danger.

The machine kept whirring and I kept hoping that my heart wouldn’t explode. The burning slowly subsided and they pulled me out.

“You did great! Are you feeling okay?”

“No, my heart rate is really high and that medicine you gave me burned a lot.”

She looked around confused to the doctor and technician. “Let me get his dad, I can’t understand him.”

I’m right here, lady! I rolled my eyes, but she didn’t see. She came back in with my dad, “I can’t understand him.”

I repeated what I said to my dad and he repeated it to her, “Oh yeah that was the IV contrast, it helps the CT machine see everything. He did have apnea and an elevated heart rate, but it wasn’t too bad.”

It felt pretty bad.

I was scared, exhausted and I had been throwing up for about 8 hours, so I let it go. I wasn’t about to make a show about something that wasn’t going to affect me right then and there , but this should never happen to anyone. If I was any other patient they would have had the decency to tell me, “Hey, we’re injecting your vein with this thing that’s going to make your body feel like you’re on fire and might make you feel like you’re dying”. They might have the decency to talk to me instead of at me. But they don’t. Because, to them, I’m just a frail crippled boy.

*It’s 42, I don’t need aliens to tell me that.

*Pro-tip: Freaking out doesn’t help a high heart rate.