Diagnosing Respiratory Disease

May 13, 1999

I answer various questions about different aspects of the IPF "experience", mostly through email, and one aspect I want to expand on and put up here on the website is that of common diagnostic procedures used on patients with respiratory disease. In this first version I will talk about my Thoracoscopy, also known as Video-Assisted Thoracic Surgery (VATS). It ended up being the result of my initial search for a second opinion after my first Pulmonologist--originally assigned to me in the local hospital to which I admitted myself with severe shortness of breath--wanted me to get an open-lung biopsy. Something about that didn't appeal to me so I called my GP and told him what was going on, and he was as skeptical of my first Pulmonologist's direction as I was, and being well-connected in local medical circles, recommended three Doctors, and when I asked, told me the best was Dr. Figueroa, who saw me and put me on a less-invasive and more methodical diagnostic course (detailed in Living With IPF). After an initial bronchoscopy, which I will describe in a later revision, I was scheduled for a Thoracoscopy about two weeks later. Briefly, the following is what you can expect in a similar situation.

Before (and During) the Procedure

The scene--Lankanau Hospital, Wynnewood, PA. The time--the first week of April, 1995.

Actually, I remember far more about how things were after the thoracoscopy, as I have little recall of the actual events leading up to it, either from a self-imposed mental block or just because of the after-effects of the anaesthesia. As best as I can recall, I went in, got prepped, went into OR, and was put under--honestly I can't even tell you if it was local or general anaesthesia, but I guess that's a good thing, as it means you won't remember it either! What I understand about the procedure is that they go in through three holes they make in your side--one with a video camera/probe, one with a forceps, and one with a little staple-gun kind of thing. They basically staple off a corner of your lung, which severs the sample and seals off the wound in one operation, and withdraw it from your chest cavity with the forceps, all under the direction of the video camera. They do this a few times, until they get enough samples to effectively diagnose whatever it is you're being biopsied for. Neat. clean, and fast--not unlike a Laparoscopy or an Arthroscopic knee procedure.

After the Procedure

Big jump in time, I know, but I'll try to explain what I think happened during the surgery, both from what I saw on my body and from what I was told. Anyway, the next thing I knew, I was in recovery, and then placed in a room--a double, but I don't think I had a roommate for all of the time I was in there.

Here's what I woke up to: I was in a bed, with a chest tube on my right side with a tube running over to a little R2D2 kind of thing with a red cover, that was hooked up to a vacuum attachment on the wall and from which they were irrigating and/or reinflating my lung. It just went about its business on its own, and from time to time they would empty the container of fluid. Just like after my transplant, with one of these things, you feel like a human Hawaiian Punch distillery, with all the reddish-pink fluid you generate. It must be the drugs they give you, but the surreal quality of it all is almost entertaining.

There were, counting the chest tube opening, three incisions, with stitches on one, tape over another, and the chest tube coming out of the third. All were about an inch or so wide, and all inside a circle about 3-4 inches in diameter on the right side of my chest, about 4-5 inches below my armpit. I also was connected up to an IV (or two), and a morphine pump (I later learned), that allowed me to up the level of morphine if I wanted to (which I usually did), until one time when it made me nauseous and I barfed into my dinner tray. Oops! I hate when that happens.So I backed off hitting the button like a madman after that. It was fun while it lasted, though. Legal drugs--they work for me but I don't recommend them for everyone.

My State of Mind

I was conscious, not real spiffy feeling, and not real hungry for hospital food--that was part of the barfing problem--but fully conversant, watching TV, and greeting family members. I met with my doctor about 3 hours after I woke up, who gave me my official diagnosis. However, unknown to him, the surgeon who did the actual biopsy--Dr. Ned Carp, who later removed my Hickman Catheter that was installed after my transplant down in Maryland--had come in to see me almost immediately after I was put in a room and told me straightaway that I had IPF--so much for the suspense factor.

So by the time I met with Dr. Figueroa, who was in an obvious state of concern, I already knew what I had, although I didn't really know what that meant, and nobody really went out of their way to tell me. What I came to know about IPF I mostly had to learn on my own in the ensuing days, weeks, and months.  Oh well, it turned out OK, but you sort of want to know and at the same time you really don't want to know, and you know what? They want to tell you and at the same time they really don't want to tell you. It's all very interesting, and touching in a compassionate kind of way, unless you take the surgeon's approach, which was--how should I put this?--rather blunt.

I was only in the hospital two nights--three days, that is--and was taken down for X-Rays almost hourly, which was a pain in the ass, but it keeps you moving. I got home hours after they came in on the third day and pulled out my chest tube, which was a Three Stooges act of its own--they tell you they're going to pull it out on the count of Three, and then they count One, Two, and they pull it out on Two! Yow! What the heck happened to Three? They slapped some tape over the hole, wrote me a script for Tylox, and that was that. Then it was two weeks at home in fairly steady but somewhat dull pain, and back to work I went.

Coping After the Fact

When you're in the hospital, the morphine insulates you from the pain, but when you go home, you better have a good supply of Tylox on hand for the next two weeks. I doubled up--here's how: when they pulled out my chest tube, I asked for pain killers, and they wrote me a script. Then then when my Pulmonologist came in to see me off, he asked me if I had received a script for pain killers yet, and I said, "Umm, no." Presto--Scripto Number Two-O. Excellent. And I needed it, as you can pretty much double any directions for usage on the bottle, take my word for it. Probably another insurance company thing, but with two Tylox at a time, I was OK for the duration.

I was probably somewhat of a baby about the pain thing, and you shouldn't worry about it if you're up for one of these. I saw far-worse patients in the hospital, some with open-lung biopsies, who were absolutely suffering miserably. I hung in there pretty well, considering. You should be able to handle it also.

Overall, with any luck you'll be home after three days in the hospital, on the couch for two weeks (hoping your kids would make less noise if you have any), and after that up and around, wondering how a chest tube wound can heal without any stitches. I still have scars from it, but I have scars from a lot of stuff that has happened since then!  Good luck and don't worry.  This is about as hard as the procedures get--even the lung transplant wasn't really all that bad.

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