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CF Cleanout

[In case you don't know, I have cystic fibrosis. That's what CF stands for.]

One of the almost inevitable experiences of having CF is getting a cleanout. It's a 10 to 14 day treatment which consists of physical therapy, intravenous antibiotics, much food, and lots of boredom. The purpose is to rid the lungs of excessive infections and mucus. Nowadays, I suppose it can be done in the home, but back in 1984 it was something done in a hospital. That's when I first experienced one.

The First Time

The Fifth Floor

I'd been feeling pretty crummy in the summer of 1984, and we decided that I should go in for a cleanout. I was also entering college in the fall, so it was a good time. I had no objection, though I was concerned. Anxious, one might say. I had a major phobia about needles, and the idea of getting intravenous antibiotics did not fill me with joy and delight.

My parents drove me up to Albany on a Saturday. There plan was to drive on to visit relatives on a lake upstate, and then to visit again on Sunday. Since we lived one hundred miles from the hospital, daily visits weren't realistic. Besides, I was seventeen, and didn't need someone to hold my hand, right?

The weekend was a fiasco from the start. First, there were no free beds in the cleanout ward, so where did they put me. The infectious diseases ward. If I looked out the door of my (obviously single) room, I could see the hepatitis precautions sign on the door of the next room. I could also see the armed guard of the prisoner within. Yup, infectious convicts were my neighbors.

Then came a long stretch in which nothing happened. It wasn't until the next day that things really started to get rolling, and it was a disaster.

It was time to put in a hep well. This gadget is basically a combination of a needle and a socket. The needle goes into a vein, and the socket is above the skin. It's useful when you need to administer IV drugs occasionally but not all the time. It's called a hep well after the anticoagulant heparin, which is used to flush the line after each use. It stings.

The idea of having one of these still makes me squirm. I was obviously upset, and told the nurse that I wanted it to be as painless as possible. She made a peculiar comment - "I'll call the Butterfly Squad" - and left. I had no idea what she meant. I thought it was a jolly euphemism for the people who are really good at putting in one of these things painlessly. Ha, ha.

A little while later someone came in and stuck one in my arm. I didn't faint. Then they attached a little bag of antibiotic in saline to drip in.

The afternoon passed. Sometime later I looked over to see the tube to the IV bag half filled with blood. I lost it completely. The nurses pulled the hep well out, and I refused to have another put in. We waited for my parents to arrive. I was going to demand that they take me home.

They didn't go for it.

Just Half a Grain?

So once again I had to face getting a hep well put in. It was somewhere around this time that I learned a "butterfly" is a temporary hep well, not meant to last more than a few hours. Geez!

I was still in full-tilt freakout mode, so they offered me Valium. Since I didn't have much choice, I took it.

Valium was... not helpful. At least, it wasn't to me. I'm sure they liked the fact that I was calmer. For me, it was like this: imagine your skin as being a balloon, and inside is a slowly swirling orange vapor. Now imagine a big ethereal hand that can pass through the balloon and push the vapor out the other side, all the while retaining the vapor's body-like shape. The hand only pushes the vapor an inch or so, leaving the balloon and the orange vapor as two bodies, one hollow, one vapor, mostly overlapping.

Valium was the hand, the balloon was me, and the vapor was my anxiety. It didn't make the anxiety go away, it just gave it an ethereal push so that a little bit of it was outside.

I'm not real thrilled with Valium.

The Eighth Floor

The next day, they moved me to a ward which had an open bed. This was on the eighth floor, which was basically pre-nursing home. I was the only patient on the floor who was less than fifty or sixty. Needless to say, it was a bit lonely.

The treatment schedule was dull. Physical therapy was fine, but the IV antibiotics were annoying. There were two, ticarcillin and tobramycin. Each came in a small plastic bag that took between fifteen and twenty minutes to empty. This wasn't a problem unless the bags were particularly cold. When they were, I could feel the icy liquid moving up my arm. No fun.

No, the real problem was timing. The drugs had to be evenly spaced throughout the day. One of them was given three times a day, the other six. So I got two bags at midnight, one at 4 AM, two at 8 AM, one at noon, two at 4 PM, and one at 8 PM. You couldn't sleep for more than a few hours at a time. Then, in between, there was generally nothing to do. Hospitals can be very boring.

The other weird thing was my arm. I didn't want to disturb the hep well at all, so I kept my arm horizontal across my chest. After a while, it froze in place. I literally couldn't move it. I'm sure it was psychological, but it was odd. Made it hard to sleep, too.

So most of the rest of the time was uneventful. Drugs, therapy, reading, listening to music, eating. Oh, wait, I didn't mention eating. I was encouraged to eat all I wanted. Each morning they sent round menus, and you got to circle what you wanted. I was encouraged to circle things and write "×2" or "×3" next to them. It would have been great if the food had been better. It wasn't bad, but... well, the only difference between the farina, the cream of wheat, and the oatmeal was the amount of water added while cooking.

There were some good moments. A younger guy with CF came up from the CF ward, and he showed me some of the older part of the hospital. We found a place where the elevator was so old it just had a sliding mesh instead of a door. That was in the teaching part of hospital. I remember a room which was supposedly used for anatomy class, where cadavers were used. There were two rows of people-sized tables, and the farthest table had something man-sized on it, covered with a sheet. Spooky.

The same guy also introduced me to the use of needleless syringes in water fights.

There were some bad moments. The worst was waking up one morning to find the curtain drawn around the bed of my 60+ roommate. People were asking him questions - "What's your name. What day it it?" - and testing him. Eventually I found out that he'd had a stroke in the middle of the night. He'd been found by a nurse in the bathroom. He was doing better by the end of the day, and they moved him out soon after.

Another night, there was someone down the hall who kept moaning. Apparently, he'd been in surgery earlier in the day and was still very disoriented. The nurses would quiet him down, but then he'd start up again. Poor guy.

Then there were the burn shakes. These are high-calorie milkshakes given to burn patients. They really add weight quickly. I was supposed to be on these the whole time, but they didn't start until just a few days before I was discharged.

One of the pluses of being in the pre-geriatric ward was that the nurses liked me. I tried to be good and not to buzz them unless absolutely necessary. They appreciated it.

Even though it didn't do much for me, I bet some guys in my position would have appreciated the view from the window. It looked out over the roof of the female student nurses' dorm. On sunny days, they'd go up there and sunbathe in swimsuits.

Also, I got used to having a hep well. Flushing it with heparin could sting, but it wasn't bad. They had to replace it in the second week, and I handled that pretty well - no Valium. The vein the first one was in had leaked, and my forearm swelled up from all the saline. It was the only chance to see what I would look like with some weight on me. After a day the arm was back to normal.

One thing that was surprising was the difficulty of keeping clean. Sure, we got clean robes every day, but I only got one or two chances to take a shower. The hep well wasn't supposed to get wet, so I had to shower with my arm taped into a plastic bag. I felt rumpled and dirty most of the time I was there.

After ten days, though, I felt fantastic. My weight was up. My energy and enthusiasm were great. It was one of the best feelings of my life. So they didn't keep me the rest of the time, and discharged me. It took the better part of a day for my arm to unfreeze.

When I left, I took with me a whole bunch of empty IV bags with me. They're used once and thrown away, and I just couldn't bear to see the waste. There must be something to do with these things... they eventually showed up in my freshman dorm room. Hanging in front of the window were six bags & tubes. Each was filled with water and injected with a different mix of food coloring to make a rainbow. It wasn't great art, but they brought color to an otherwise dull room. Made an interesting conversation piece, too.

Summer, 1987: Take 2

I went back in for another one in the summer of 1987. This one went much better. Or rather, I should say that very little of it was memorable. This is due to the fact that the treatment happened on a semi-outpatient basis.

That summer I was staying in my brother's apartment downtown. It was just a few blocks from the hospital, so I spent most of the down time at the apartment. Rather than sit around the hospital for hours between therapy, food & drugs, I'd sign out and leave. A shortcut through the grounds of the neighboring VA hospital got me home in five minutes. Consequently, I remember almost nothing of that hospital stay. I was actually with the other people with CF, but that's about it.

The one exciting moment was crossing the VA grounds on a weekend afternoon. I got to the far gate and found it closed. Rather than go all the way back and circle around, I decided to climb the chain link fence. In retrospect, this was rather a dumb thing to do. The fence was higher than I, and my arm (which, like the previous cleanout, was frozen in place) had a hep well in it. But I actually managed it, then wondered why I'd taken the risk.

A Third Time, Avoided

The next time my health got bad enough for a cleanout was a few years later. Instead of going in to the hospital, I tried a new antibiotic (ciprofloxacin, I think). It was fantastic. I felt energetic and great when the course of treatment was over. It was like a cleanout in a pill, sans boredom and 3 AM cold packs.

There was a downside, though. The antibiotic was so strong it cleaned out everything, and I do mean everything. The good bacteria that helps digestion was gone as well. I spent what seems like the next month or two eating a lot of yogurt. But it was worth it.

Since then I've only been on that antibiotic once again. It was good the second time, but not super. And since that last time, at least five years ago, I haven't needed any special treatments. Thank goodness.

The Story Continues

I'd hoped not to have to add anything more to this page, but that was wishful thinking. In the fall of 2000 I went in for another cleanout, the first in thirteen years. It was not the last.

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