This is the sixth in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

The following article contains very crude humor which may be offensive to some readers. Reader discretion is advised. You may want to skip to the next installment.

There is a new sitcom on HBO called Lucky Louie that is full of very foul language, crude humor, R-rated sex scenes, politically incorrect in every way shape and form and very very funny. I’m almost ashamed to admit I’ve never missed an episode.

In the episode which aired right before I entered the hospital there is a scene where Louie is lying in bed next to his wife in the middle of the night. She is trying to sleep and he is contemplating the fact that some day we are all going to die. He muses “Stupid dogs are always happy because they’re just laying there licking themselves and have no fuckin’ idea that someday they’re gonna die. Sometimes I wish I was a dog and didn’t know any better. Would it be better to know you are going to die or not? Maybe it’s better if you do know…”

The entire time he is rambling and contemplating his own mortality, his wife becomes more and more agitated because he’s keeping her awake. She tries to ignore him, puts the pillow over her head, tosses and turns to no avail. Finally she just reaches over under the covers and starts giving him a hand job. His voice breaks in mid sentence, he stammers, breaks into a broad smile, and finally he shuts up. Soon he’s falling asleep and his wife rolls over and goes to sleep herself.

So there I am lying in the emergency room of St. Vincent Hospital about to have life-threatening surgery and Mom says to me “Are you scared?”

I replied, “Actually stuff like this isn’t really that scary to me. I don’t have any choice here except to go ahead with the surgery, hope it turns out okay, and if it doesn’t there is nothing I can do about it. I really don’t have time to think about what’s about to happen or what could happen. For me the really scary times are just like Lucky Louie the other night. When you’re lying in bed late at night with nothing else to think about except the fact that no matter what you do, someday you’re going to die… Those are the really scary times for me although this is scary enough.”

Mom said laughing “Well, I can’t offer you Louie’s solution to the problem.”

I replied “Maybe we can get that cute blonde intern back in here to perform a little ‘procedure’ on me like Louie’s wife.” We both busted up laughing.

You’ve got to laugh at times like these to keep from crying.

Back to more serious topics in our next installment.

This is the fifth in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

They always say you can live a couple of weeks without food, a couple of days without water, but only a couple of minutes without air. So the verdict was in and I was going to need surgery and the hard part of it all was going to be keeping the air moving in and out of me and once the surgery was over being able to continue to breathe on my own unassisted.

As I had previously heard the resident doctor in the ER get a page from radiology and from my primary care doctor Dr. Swinney, I soon heard him get paged from Dr. Vohra my pulmonary doctor. On many previous occasions I have discussed with him the consequences of having general anesthesia. In the battle to treat my chronic urinary problems, my urologist had suggested a couple of surgical procedures that might have provided some help. I really didn’t want surgery and to convince the urologist it was a bad idea, I consulted with Dr. Vohra who gave me a really good argument why I shouldn’t have surgery. It was his fear that once I had been put on the ventilator during surgery they might have difficulty weaning me off of it. He said there was a real possibility I could end up on a ventilator the rest of my life.

About 12 years ago I had a nasty case of pneumonia that landed me in the hospital for 12 days. Ironically just before that hospital visit I had seen a documentary about Nobel prize-winning physicist Stephen Hawking. It told about his groundbreaking research into black holes, the Big Bang, and the nature of the universe as well as about his personal battle with ALS (sometimes known here in the US as Lou Gehrig’s disease). ALS is a motor neuron disease somewhat similar to SMA. Professor Hawking has been in a wheelchair since the 70s and on a ventilator full-time since he contracted pneumonia in 1985. As a result of the severity of his disability he can’t just sit down with a pad of paper and pencil or stand at a chalkboard and derive complex mathematical equations. He has to visualize the entire thing in his mind and do all of the calculations in his head first before he describes them to an assistant or colleague. These visualizations are in the form of three-dimensional shapes that represent the equations. His colleagues say that because he has to do this graphic three-dimensional visualization, it has given him insights into the equations that would not be apparent if you had manipulated the raw formulas in a more traditional written form. In other words if he wasn’t as severely disabled as he is, he wouldn’t be able to have the insights into the nature of the universe that he has. Hearing this from his colleagues, it reaffirmed my own beliefs that my disability was as much a gift from God as it was a handicap or drawback. Specifically however when I was lying in the hospital all those years ago with pneumonia, I could look at someone like Professor Hawking and realize that being on a ventilator need not prevent me from doing valuable and productive work. A few years later actor Christopher Reeve provided a similar example that being even more disabled than I was didn’t necessarily prevent you from doing great things with your life.

As I now again face the possibility of a tracheotomy and respirator, it was a comfort to think about Stephen Hawking and all that he has done and continues to do. I read an article that recently he was in San Francisco scheduled to give a lecture at some conference. As they were getting him dressed that morning he went into full cardiac arrest. They were able to resuscitate him and he wanted to go ahead and give the lecture. They ended up setting up a video phone link to his hotel room where he gave his presentation using his usual computer synthesized voice. Granted I’m not a Nobel prize-winning physicist with his resources nor am I arguably the smartest SOB in the world as is he but if he can do good work in his condition I know I can as well.

I had had general anesthesia on a couple of occasions maybe 12 or 13 years ago. I had a different urologist in those days. To avoid libel we’ll call him Dr. Lousy (not his real name). My urinary problems in those days were caused by stones which collected in my bladder. Dr. Lousy did a procedure where he would insert a scope into my bladder. He would find the stones he would zap them with a laser beam and they would pulverize into fine powder that could be easily passed. Although some urinary cystoscopies can be done while you’re awake, this laser thing is apparently traumatic enough that they want you knocked out for it.

At that time I had never had general anesthesia. In fact I knew so little about anesthesia than I thought the term “local anesthesia” meant it was made by Eli Lilly & Co. (For those of you out of town who don’t get that joke, they are a locally based pharmaceutical company. “Don’t gimme none of that out-of-town stuff. I wanna local anesthetic shipped fresh from the south side of Indy”)

The biggest problem in putting me under is that they can’t get an intubation tube my throat because my mouth doesn’t open very far. They had to use a nasal intubation tube. I had had tubes up my nose into my lungs prior to that one time. When I had the pneumonia they had done a bronchoscopy to suck some gunk out of my lungs. It wasn’t a very pleasant experience but it sure helped me breathe. The first time Dr. Lousy put me to sleep it went relatively well. Sometime later we tried to do it again and it was a minor disaster. It took them over 45 minutes to get the tube up my nose and into my lungs. They scraped the living daylights out of the inside of my nose and back of my throat. I was supposed to be knocked out as they were trying to insert the tube however I kept waking up partially in a panic. It felt like I was in a bad Stephen King horror movie lying there helpless while these jackasses try to stuff a tube up my nose. When they would fail, they would pull it out dripping with blood, and then I would spit blood and tissue into the suction tube while trying to tell them what they were doing wrong. When it was all over the doctor found nothing in my bladder that time. I was furious and somewhat hysterical that I gone through all that hell for nothing. Furthermore he gave his report directly to me in the recovery room while I was still pretty much out of it and had no idea what he was saying. Then he refused to talk my parents and left the building. Needless to say we transferred my business elsewhere. My new neurologist Dr. William Sherrill is a really great guy.

Even though I tolerated the anesthesia pretty well, that was over 10 years ago and I know I’m in worse shape now than I was then. I didn’t have Dr. Vohra the pulmonary specialist at that time but I’ve had him for many years since then and he is consistently recommended no general anesthesia unless it’s absolutely necessary. Of course a perforated intestine can be life-threatening so it was absolutely necessary.

From what they were telling me this surgery was going to happen right away. I had hoped perhaps they would admit me, perhaps do a few more tests, and schedule surgery for tomorrow morning but it didn’t look like that was going to happen. While I had plenty of doctors working on my case there was something else I needed which was equally important… prayers. Right after the ambulance left my house, Mom had made a quick phone call to Margaret Arthur who is in charge of St. Gabriel’s prayer chain. That put into motion about 30 or 40 people praying for me in a matter of minutes. That was just to get me to the emergency room and get diagnosed. For a life-threatening surgery I would need bigger spiritual guns. I really wanted to be anointed before the surgery and that means I needed a priest.

It used to be that if you were sick and they sent for the priest you were a gonner. The sacrament which was commonly known as “The Last Rites” was technically called “extreme unction”. That means it’s an anointing (unction) that was only to be used in extreme circumstances like on your deathbed. In more modern times it has been renamed “Anointing of the Sick” or “The Sacrament of the Sick” and you don’t have to be knocking on death’s door to get it. Anytime you have serious or chronic illness you can be anointed. Most people get it before major surgery which this certainly was. About once a year they have special Mass where anyone who is elderly or chronically ill can just come up after Mass and get anointed. I’ve been anointed many times. St. Vincent’s Hospital is a Catholic hospital and there was a possibility they had a priest on the premises. I had the nurse called the chaplain’s office to send someone down. If I had a better idea exactly when the surgery was going to be, I could’ve called St. Gabriel’s and if Father Larry was around he could have been up there in 20 minutes or so but I hated to have him drop everything and get there two minutes before I was in surgery or something similar to that.

Soon a young man whose name I sadly cannot remember arrived from the chaplain’s office. He explained that he was a Catholic chaplain but was not a priest. He said if I really needed a priest they can try calling a nearby parish. I told him it wasn’t necessary. I just thought if they had one handy I would get anointed. There is a theological principle called “baptism of desire”. It says that if you really want to be baptized but for some reason cannot and you die before you are able to be baptized then it still counts as a real baptism. I speculated with him that perhaps there is also an “anointing of desire” and if you really want to be anointed the cannot it still counts.

I told him about the risks I was facing and the possibility of life on a ventilator. I told him about Stephen Hawking and his life on a ventilator. I also told him about my friend Buz who just lost his adult son to a three-year battle with cancer. I told him I’d tried to be a source of spiritual strength for Buz and tried to encourage him to hold onto his faith during his crisis. “I guess it’s time to practice what I’ve been preaching” I told him. There is that old saying “It’s easy to be a holy man upon the mountain but it’s much tougher to do so down here in the real world.” I thought about all the things I had said to Buz over the past several years and realized I had really meant them. I wasn’t just regurgitating doctrine to him all that time. As I reflected on the confidence I had in encouraging Buz, it renewed my confidence to face this crisis of my own.

The chaplain shared with me the story of his own struggles. About a year ago he had had bariatric surgery and as a result have lost over 170 pounds. He showed me his hospital picture ID from before his surgery and you could tell he had lost a bunch of weight just from the shape in his face. He looked like he was in really good shape now. He talked about how his faith had sustained him through his ordeals. He also talked about his belief that angels watch over us. He didn’t know I’m not a big fan of the theology of angels. However I thought about all the people who were praying for me and so in some respect they are my angels although probably not in the sense he was talking about. Anyway my visit with him seem to give me some needed support.

Pretty soon an anesthesiologist named Dr. Hurd (or perhaps Dr. Herd) came in to discuss my case with me. I explained to him that he would not be able to intubate me through the mouth. I told him I had another anesthesiologist go through my nose with no problem but another one had had a terrible time getting the thing in me. I have since remembered vaguely that the first guy had used a pediatric size tube on me. I only weigh 100 pounds and my last pulmonary function test said that my lung capacity was only 28% normal for someone my size so a pediatric tube was probably sufficient. He asked lots of good questions and listened well to everything I told him. He seemed suitably concerned about what a tough case I would be. I liked that. I don’t want some cocky know-it-all who doesn’t recognize a challenge when he sees one. Later Dr. Hurd came back with another anesthesiologist colleague who was going to assist him. He wanted someone handy to work with him in case he needed an extra pair of hands. I really liked that as well.

Next came the surgeon Dr. Chad Davis whom I’d never met before. We learned however that he was partners with my mother’s surgeon Dr. Arregui who worked on Mom’s pancreas a couple of years ago. He is a very personable man who did a great job of explaining to me what we had to do. In all likelihood he would end up having to remove the section of my colon. He would create a temporary colostomy which means that my intestines would be attached to an opening in my abdomen called a stoma. I would then wear a plastic bag attached to my skin with adhesive. It would collect my feces. The remainder of my colon would be stapled closed. When he used the word “temporary” immediately I’m thinking in terms of two or three days perhaps a week. When I asked what he meant by temporary colostomy he said very calmly “probably two months”. That was a real shock!

As I’ve mentioned, I’m dependent upon a back brace for sitting up in my wheelchair. The brace is like a plastic body cast. It’s a two-part shell that runs from just under my armpits down to my waist. The brace is probably 30 years old and I’m doing everything I can to make it last as long as possible. A couple of years ago we tried having a new brace made for me but it never did it right and I gave up on it. The prospect of needing to cut a large hole in this brace to accommodate an ostomy bag really had me worried. The big question is where to cut the hole and how large to make it. I start out the day with a brace on me rather low. Throughout the day I slip down inside the brace and it rides up under my arms. Even if I had the hole in the right place to begin with, by the end of the day things could be really out of whack. This problem was one of the reasons I had been avoiding bladder surgery.

If I couldn’t get away for my back brace to peacefully coexist with my colostomy, I could end up in bed with the brace off for the entire two months. That amount of inactivity would weaken my lungs and my arms so that when all was said and done I might be in really nasty shape even if I did get off the ventilator without any difficulty.

Dr. Davis was very confident that I could pull through this okay. He had looked at my cat scans and knew that my insides were kind of messed up because of the severe curvature of my spine. I discussed with him the possibility that the air in my abdomen had not come from a perforated intestine. I wear a CPAP device at night which forces air into my lungs. I asked him about the possibility that my lungs could be leaking into my abdomen and the result was that air that the CAT scan had shown. He was skeptical about the possibility but realized the seriousness of this surgery. He offered to begin the surgery using a small incision in my navel where he would insert a laparoscope to look around first. This would confirm whether or not my intestines were really perforated. If they were, then he would have to open me up with a larger incision and do the bowel resection and colostomy as originally planned. I really liked the idea of doing the simpler exploratory first.

Dr. Vohra would be in to see me soon to give me his latest input on my situation however at this point it was just a matter of waiting until they were ready to perform the surgery in about an hour.

At this point I just had to turn everything over to the Holy Spirit and trust that everything would be okay. The Holy Spirit is sometimes referred to as the “Breath of God”. Some translations of Genesis 1:2 say “a mighty wind swept over the waters.” Other translations say “the breath of God swept over the waters” and still other translations simply say “the Holy Spirit”. It was the breath of God that breathed life into Adam.

By whatever name, I simply had to put my own breathing concerns into the hands of the Breath of God… the Holy Spirit.

Click here for the next article in my blog which takes a brief time out from telling my hospital story.

Click here for the next installment of the hospital saga where I deal with loose ends before my surgery.

This is the fourth in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

There are two entrances to St. Vincent Hospital Emergency Room. The public entrance looks like most emergency room entrances with automatic sliding glass doors, a small lobby leading up to a triage desk, and an extensive waiting room. However when you come by ambulance you go down a ramp to an underground parking garage which is really nice if the weather is nasty. Today was a sunny day so it didn’t really matter. They wheeled me through a set of automatic doors, onto an elevator, up one floor and directly into the emergency room without waiting anywhere. Dr. Swinney’s office had called ahead to let them know I was coming so that seemed to expedite matters a little bit.

They wheeled me into a small examination room and transferred me from the ambulance gurney to the hospital gurney. Mom and Dad had followed in the van and Mom arrived very shortly after me while Dad found a parking place. I described my symptoms to a couple of nurses and told them about the rough night I had had. They always ask you to describe your pain on a scale from 1 to 10. I told them it was about a four continuously, a five when a cramp occurred, and seven or eight last night during the worst of it. Because I didn’t know if it was urinary or intestinal I knew the first thing they would want was a urine sample. It’s almost impossible for me to give one on demand but anticipating they would need one I saved a sample right before we called the ambulance at home and had brought it with me. My urologist keeps me in good supply of empty sample containers for just such a purpose.

The first actual doctor I saw was a female petite blonde intern whom I described as “to cute to live”. Her personality and looks were almost a stereotype or caricature of cuteness and perkiness. Don’t get me wrong… she didn’t appear to be the dumb blonde or airhead stereotype. She seemed intelligent, competent, in command of the situation, sensitive to what was going on with me and in every way very professional. She was just terminally, incurablly cute.

Among the things new doctors or nurses who encounter me want to know is what is the exact nature of my disability. It’s only been in the past few years that I’ve been able to give them a definitive description of my “diagnosis”.

I was born in 1955 and by the time I was the age of a toddler it was obvious that I wasn’t toddling. Although I could sit upright and sort of scoot on my belly, I never did crawl or walk as an infant. I had a little “spider” walker that they would sit me in with my feet on the floor but I never really could push it around with my legs. The best I could do is wiggle back and forth in it really hard and sometimes make it scoot on a very smooth floor. My parents took me to Riley Children’s Hospital here in Indianapolis for a diagnosis. It was pretty obvious had some sort of neuromuscular disease similar to Muscular Dystrophy. The doctors at Riley finally gave me the label “amyotonia congenita” which is Latin for “low muscle tone from birth”. It’s not really so much a diagnosis of a particular disease but it’s more of a description of symptoms at least in my opinion. It’s a term they used for a whole category of congenital neuromuscular diseases that they couldn’t really identify.

Since most doctors had never heard of amyotonia congenita and it wasn’t really a very useful term to begin with, whenever anyone asked me what I had I would just say “a form of muscular dystrophy but not the usual variety Duchenne’s muscular dystrophy“. It wasn’t a very satisfying answer because it sounded like you didn’t know what you really talking about but it was the best answer I could give.

When I was in my last year of college I got a part-time job as a computer programmer at the Indiana University Medical Genetics Research Department which ironically was housed in the basement of Riley Children’s Hospital where they originally couldn’t figure out what was wrong with me. This was long before the human genome project was under way. Genetics research involved looking at vast amounts of lab data on various genetic markers and trying to determine probabilities that if you had a particular marker you would pass along some genetic disease which was on a nearby section of chromosome. They had a database of over 15,000 families. A large section of the Dayton concerned families with Huntington’s disease. When genetic researchers elsewhere first identified the gene that causes Huntington’s disease, our database was used to verify their results.

I’ll never forget my interview for that job. I was in a room with the head of the department Dr. Donald Merritt, M.D. , Ph.D. and my mentor Dr. John Gersting from the computer science Department. Dr. Merritt asked me “What’s your diagnosis?” I didn’t understand at first. I thought he was wanting me to diagnose something. What he really wanted to know was “With what disease have you been diagnosed?” but he didn’t say that.

He finally asked me in plain English “What have you got? Why are you in a wheelchair?”

I explained to him that I had some sort of genetic neuromuscular disease similar to muscular dystrophy.

His reply was “well I can name about a dozen of those. Which one is it?” So I explained that they had called it amyotonia congenita but that was really just a symptomatic description and not a diagnosis.

He asked me “don’t you want to know which kind of muscular dystrophy you really have?”

My response was a very matter of fact “well Doc… when you can tell me which of those dozen kinds of M.D. you can cure… then I’ll worry about whether or not that’s the one I’ve got.”

He didn’t have much of a response to that. He later explained he just wanted to know if I was comfortable discussing my disability. He wanted to make sure I wasn’t overly sensitive or easily offended by discussing such things. My sort of snappy in-your-face reply to his inquiries gave him all the info he needed. I got the job and worked there the rest of that year and another year and a half after I graduated as well. At that point my disability (whatever the hell it was) started to get the better of me and I had to quit work because I didn’t have the stamina to work full-time.

As best I can recall it was sometime in 1998 that I was browsing around the Internet looking for some medical information and just for fun decided to search for “amyotonia congenita”. Fortunately I misspelled it “amytonia” without the extra “O” which appears to be somewhat a legitimate alternate spelling. One of the things I came across was a book called “Me in the Mirror” by Connie Panzario.

Me in the Mirror by Connie Panzarino Book Cover

The back cover reads in part…

Writer, activist and artist Connie Panzarino was born in 1947 with the rare disease Spinal Muscular Atrophy Type III, formerly called Amytonia Congenita. Throughout a childhood filled with both pain and joy, she strove to define herself: “I knew I was different. Now I had a name for the difference, like being Italian or Jewish. I was an Amytonia. I didn’t understand if that meant that I would never walk, or if all it meant was lack of muscle tone. I didn’t know that most children with this disease die before they’re five years old.” In this deeply moving and eloquent memoir, Connie Panzarino describes her decades of struggle and triumph, her relationships with family members and long-time lover Ron Kovic (author of Born on the Fourth of July), her eventual turn to lesbianism, and her years of pioneering work in the disability rights movement. Filled with spirit, passion and defiance, The Me In The Mirror tells the story of a remarkable life.

I ordered the book from Amazon.com but never got around to reading it. Unfortunately Amazon now thinks I’m interested in radical lesbian feminist literature and keeps recommending such books to me but that’s another story.

So what the hell was Spinal Muscular Atrophy, Type III anyway? I’d never heard of it before. Apparently they had a new name for my old disease that sounded much more like a diagnosis than a description. They even had at least three different types of it. That led me to search on the phrase “Spinal Muscular Atrophy” and I found a whole host of information including some autobiographical articles from people who had the disease. In many instances it sounded like they were a fly on the wall in my life. They described almost exactly the same things I went through. The main resource for information was an organization called “Families of Spinal Muscular Atrophy” or FSMA.org on the Internet.

One of the things I learned about the disease was that there was a genetic test you can take that only required an ordinary blood sample to see if a particular section of your number five chromosome was messed up. I didn’t have a doctor who was specific to my disability. Years ago I had a long time connection with the Marian County Muscular Dystrophy Foundation which was a local United Way organization separate from the more famous MDAA group run by Jerry Lewis. At one time or another Mom and I had each served on their board of directors. They now go by the name “Muscular Dystrophy Family Foundation” I called an old friend at the foundation and she referred me to their doctor who in turn referred me to be Indiana University Medical Genetics Department which was where I worked some 20 years previously. They since had moved out of the dark basement of Riley Hospital into a more modern medical research building on the campus of IUPUI. I met with a genetic counselor who gave me some good information about the disease. They took a blood sample and a few weeks later I had a positive result for SMA. The difference between Type I, Type II and Type III is mostly the age of onset. Mine pretty much figures out to be Type II.

Of course I’m still in the same situation as I was when Dr. Merritt asked me my diagnosis… they still can’t cure any of them but at least there is really significant and promising research going on into disease. The bad news is that any treatment they come up with is going to be most effective for infants who have not yet spent their entire life dealing with the effects of the disease. On a positive note it has given me useful information should my sister Karen ever want genetic counseling about her or her infant son Cole. Genetic counseling for Karen was one thing Dr. Merritt suggested I should consider in deciding whether or not I should pursue a more detailed diagnosis. On the other hand my conversation with him was in the mid-1970s and they really hadn’t come up with the term Spinal Muscular Atrophy at that time.

So today when the interns or residents asking about my disability I can easily say I was diagnosed with Spinal Muscular Atrophy Type II and sound really impressive about it. Of course their is the same blank stare as if I had said “amyotonia congenita”. When they give me that blank stare I usually add “it’s a kind of genetic neuromuscular disease”. That tells them what they need to know. Now that we’ve figured out what was wrong with my muscles, now it was up to them to diagnose the pain in my belly.

They drew some blood and checked the urine sample. They also started an IV. It didn’t take long for the urine sample to come back negative so I knew it had to be intestinal. The bloodwork showed an elevated white cell count which was indicative of an infection somewhere but hell the 102.5 fever the night before had told me that much. Eventually a resident doctor came in and told me they were going to do a CAT scan. He also said he was leaving at 11 a.m. and would be turning my case over to the next resident.

They brought me in two huge styrofoam cups of lemonade laced with some sort of radiological contrast. I had 45 minutes to drink the first one… another 45 minutes to drink the other one… and then the CAT scan. It took me about 35 minutes to get the first one down. It’s pretty nasty stuff and it’s hard to drink such large volumes in a short amount of time. I barely got down 20% of the second cup and I just gave up. I told the nurse I couldn’t drink anymore. She said well if that’s the best I could do it would be okay. About a half-hour later they came and got me for the CAT scan. It was lunchtime by then so Mom and Dad took turns going to lunch while I was getting scanned.

They had just transferred me from the gurney to the CAT scan table when someone stuck their head in the door and told the technicians another patient was waiting. Apparently this patient had already had contrast material injected into them and had to be scanned immediately so they transferred me back to the gurney and had me wait in the hallway. It didn’t take very long and they eventually brought me back in, transferred me to the table and strapped me in.

I’m not claustrophobic but CAT scan machines are a bit scary for me. When I’m lying on my back my arms and legs flop in the direction they want to. I’m always concerned that my knee or elbow will be sticking out too far and get crunched as the table slides in and out on the machine. I always have the technicians make sure everything is tucked in and strapped down very well. The machine tells you when to hold your breath and when to breathe. It even has a little countdown clock that lets you know how long you have left to hold your breath which is especially nice for me because I can’t hold it more than a few seconds anyway.

When it was all over, I asked the technician if it came out okay since I didn’t drink the full amount of contrast liquid. She said the nurse had told her about my inability to drink it all. She then said “I don’t know how they determine who needs to drink the stuff and who doesn’t. Your scan came out just fine.” That implied to me perhaps they didn’t need to have me drink anything at all. They did give me other injectable contrast through my IV line. That kind of pissed me off.

I returned to my little ER cubicle and tried to relax. I hadn’t slept well the night before and I had been awake since 6 a.m. or so. While waiting, Mom joked that perhaps she needed to be seen in the ER as well. Weekend before last she had sprained her foot walking in the back steps at the lake. It had been very sore for a couple of days but then it got better. However it was getting worse again and after walking all over the hospital that day it was getting even worse. She didn’t do anything about it that day but a few days later while I was in hospital she went to her foot doctor and sure enough she had a broken toe. As I’m writing this, she is still limping around in an oversized shoe with her foot wrapped up.

Eventually I heard someone paged over the PA system with a phone call from radiology. I was 99% sure that was my report. A couple of minutes later the same doctor was paged with a call from Dr. Swinney was my primary care doctor. Now I was sure the diagnosis was finally in. The resident from the from the next shift whom I’d not yet met finally came in to talk to me with my official diagnosis.

“Your CAT scan shows air in your abdomen where it should not be. The most likely cause of this is a perforated intestine. You are probably going to have to have surgery. The surgeon Dr. Davis will be in to talk with you shortly. We’ve talked with Dr. Swinney and we are going to talk to your pulmonary doctor Dr. Vohra.”

The last sentence was the most important one in that diagnosis. Many times I had discussed with Dr. Vohra the possibility of having various surgeries. He always said that with my very weak lungs, there was always a danger they would have trouble getting me off of the ventilator after surgery. There was a real possibility I could be on the ventilator for days, weeks, or even the rest of my life. This was going to be pretty major surgery and if he signed off on it, that meant I really really needed it badly. The risks of not having surgery in this instance were going to be much greater than the risks of ending up on a ventilator the rest of my life.

The diagnosis was in. The solution was surgery. The risks were huge. Now I had to figure out how to deal with it.

In our next installment we supplement the medical care with spiritual care.

This is the third in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

As the ambulance arrived at my house I couldn’t help but think back to the first time I’d ridden in an ambulance 16 years ago. It was February 5, 1990 under almost exactly the same circumstances when I took my first ambulance ride. I had severe cramping and needed to get to the ER but I couldn’t sit up or wear my back brace. I remember the exact date because I had plans that evening to attend a birthday party for my young friend Anne Chapman who was about to turn 14. I don’t know how I recall that the party was scheduled for the day before her actual birthday which is February 6. I remember it was unseasonably warm and a bright sunny day. Not the kind of day you wanted your only trip outdoors to be on a gurney in an ambulance.

I don’t recall anything about the EMT who drove the ambulance but I will never forget the one who rode with me in the back. Her name was Mitzi and she was about my age. On the 20 minute ride to St. Vincent Hospital we discussed a variety of topics in between questions about my medical history. It was amazing how much of our life stories we managed to get in in a short period of time. I told her I was college-educated in computer science, did work from home computer consulting, volunteered at church etc. She told me about her kids, her struggles as a single parent, working hard to get her EMT certification during it all, and her mixed emotions about the fact that her teenage daughter was about to make her a grandmother at the ripe young age of 36.

I have to admit it was a strange feeling to realize a woman only slightly more than a year older than me was about to be a grandma. Here was a reasonably attractive single woman my age with whom I developed an instant rapport. She was someone I had my usual slim yet not impossible chance of dating and any day she was going to be “Grandma Mitzi”. It certainly makes you feel especially old when you’re lying there with your gut on fire to begin with 🙂

When the ambulance carrying myself and Mitzi arrived at St. Vincent that day 16 years ago, she smiled and promised to check up on me later. Much to my surprise she did. A couple of hours later while waiting in the ER she stopped by to see how I was doing. She confessed to me that despite the fact that it probably violated some regulation or rule, she had written down my address and was going to send me a get well card.

It was during this visit to the hospital that they first diagnosed my diverticulitis. They put me on antibiotics for a few days and sent me home. Sure enough a few days later I got a get well card from Mitzi the EMT. I couldn’t imagine why she’d taken such an interest in me but I know better than to let an opportunity pass me by. I sent her a Valentine card in reply including a rather mushy, extremely flattering letter. It thanked her for taking good care of me and keeping me distracted from my pain during my ambulance trip.

I don’t recall the exact sequence of events after that but I think we started exchanging phone calls after that. She would be sitting around the ambulance garage for hours waiting on a run with nothing to do so she would call me up and talk for a couple of hours. At some point we made a date and went out to dinner. She picked me up in my van and we went to Olive Garden. I had my usual chicken parmesan. By this time her grandchild had been born so it was now official… I was so old I was dating grandmothers! We only went out one time but continued to talk by phone for the next couple of months. She didn’t like being called at home so mostly she called me during her idle time at work. Eventually she just stopped calling sometime in July.

One of the things she said to me on that first and only date (or second date if you count the ambulance trip as our first date) was that she considered me “dangerous”. It was probably the most flattering and empowering thing anyone had ever had ever said to me. I asked her what she meant by dangerous and she said she was scared that I had the capacity to worm my way into her heart. Mitzi was a very tough person who had been dealt lots of problems in her life and she had built walls around herself. She identified me as a person who could break down those walls, get inside her, and reveal the mushy parts that she didn’t like to admit were there. There had been women in my life who had admitted to me bluntly that they felt “safe” around me because of my disability. While I consider myself a gentle person and a description “safe” ought to be a compliment, in that instance it was actually quite insulting because it meant that the woman didn’t really think of me as a real man. When Mitzi described me as “dangerous” it was very much a complement to be and my manhood.

Although the relationship didn’t really go very far, in many ways it very much changed my life. I had always presumed the only way I could develop any kind of a relationship with a woman would be if she had lots of time to get to know me and to eventually see the real me that is often obscured by my disability. I always figured once they got to really know me then perhaps they could look past the wheelchair, the bent up spine, the contracted joints and other deformities and limitations. I couldn’t possibly conceive of being on the receiving end of anything that remotely approached “love at first sight” yet much to my surprise when I was in my most physically vulnerable and helpless condition lying on a gurney unable to move my arms, drive a wheelchair, type on a computer etc. somehow an instant chemistry developed between me and this woman. It was a chemistry that led to a interesting, entertaining, and overall satisfying relationship that lasted several months.

The confidence, experience and adjusted self image that I gained from my relationship with Mitzi the EMT led me to much greater success in other relationships very soon after that.

So it was with some degree of disappointment that when a couple of young male EMTs showed up at my house the morning of August 8, 2006. I still had a nice ambulance ride chatting with one of them. I asked him if he’d watched the new TV series “Saved” on the TNT network about paramedics who work for a private ambulance service. He said he’d seen one episode and wasn’t very impressed. I kind of enjoy the show but probably wouldn’t watch it if it wasn’t for the fact there’s nothing else on during the summer. We talked about the Brickyard race which was just a couple of days earlier. Rural Metro Ambulance provides the ambulance service for the Speedway. During a Brickyard weekend they keep the unit there on standby 24/7. The boss had told these guys if they would do an overnight shift, he would get them a cush job on race day. They agreed and ended up watching the Allstate 400 at the Brickyard from the Allstate suite. Air-conditioned, lots of free food, no runs whatsoever! They had a great time. During the trip I also told him a much abbreviated version of the story about Mitzi.

It was a pleasant enough trip to the hospital. The guys that took care of me were friendly and competent but the only way any of us were going to get any action that day was if we had come across some damsel in distress on the side of the road along the way. That didn’t happen. Oh well… I guess Mitzi was a truly once-in-a-lifetime experience.

In our next installment they try to figure out what’s really wrong with me.

This is the second in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

Once we made the decision that I needed to go to the emergency room yet it wasn’t a “911” type emergency we had to figure out how to get an ambulance. Mom looked in the Yellow Pages expecting to see lots of familiar names of local ambulance companies and she didn’t recognize any of them. I suppose the fact that we’re not intimately familiar with ambulance companies is a good thing but right now we need one. Ohe tried picking a company with a West side address. They told her the soonest they could come with about 11 a.m. and it was currently a little before 9 a.m. now. She asked them to recommend a different company and a suggested a couple. Among them was Rural Metro Ambulance which we had used a few years ago when Mom had some heart trouble when we were at the Lake and she needed to be transported from Johnson County Hospital to St. Vincent Hospital here in Indy. We called them and they said they would be here in 30 to 45 minutes. That sounded great.

Mom and Dad finished getting dressed and started packing things for me to go. Even though I was going to be lying down in the ambulance, there was a good chance they could patch me up and send me home. In that event I would need my wheelchair, a change of clothes, my back brace etc. Additionally there was a chance I would end up being admitted to the hospital which meant that I needed my CPAP breathing equipment.

My St. Vincent Call Button

One essential item we had difficulty locating was my St. Vincent’s call button. About 15 years ago when I was hospitalized with my first bout of diverticulitis I was unable to work the nurse call button. They brought in some guy in the biomedical engineering department. They had a variety of specialized call buttons for disabled people. The most promising one was a rubber pad about 3 inches in diameter that you can lean against to trigger the call. We would put it under the corner of my head and I would tilt my head sideways to trigger it. It works pretty reliably during the day but after laying completely still most of the night it would slip out from under my head or the pillow would sink so that I couldn’t turn my head well enough to trigger it.

The specialized devices had a simple 1/4″ jack that look like a headphone jack where they plugged into the wall above the hospital bed. Dad and I have wired lots of different devices with little easy to push micro switches that I regularly use to control lots of different gadgets. During that first stay years ago, dad tried to create a microswitch gadget I could plug in at St. Vincent’s but for some reason it didn’t work. The hospital engineering guy looked at the one we were trying to create and made one for us that did work. He told me when I leave the hospital just take it home with me and bring it back anytime I come again. I’ve been doing that for 15 years.

A couple of years ago I spent an overnight at St. Vincent with a nasty urinary infection and suddenly the wire and switch no longer worked. Since my previous visit they had rewired the entire hospital call system. The old system used a “normally open” switch that when you close it it would call. The new system was “normally closed” and pushing the button needed to open the circuit. They’v rewired the call button for me and it continued to work fine after that. My only difficulty was that the wire and they used was extremely stiff and sometimes it was difficult for me to hold on to since my arms and hands have gotten weaker over the years.

Anyway… the question was no longer “Who you gonna call?” It was “How you gonna call?” Because we couldn’t find the call button.

The 3rd drawer where I keep all my cables

We always keep the call button in a dresser in our spare room where I keep lots of computer cables and spare computer parts in something we call “The Famous Third Drawer”. Mom and Dad both looked through it thoroughly and could not find it. We wasted a few minutes trying to figure out where else we might have put it. Eventually Dad found it in the third drawer right where belonged. I can’t figure out how they missed it, can you?

Very soon after we found the call button, the ambulance arrived and I was on my way to St. Vincent Hospital Emergency Room. In our next installment I go cruising for chicks in an ambulance and flashback to my first ambulance trip.

This is first in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

I’ve heard there’s allegedly an ancient Chinese curse that says “May you live in interesting times.” That joke of course is that while “interesting times” might be considered a positive thing, according to this proverb it’s actually quite negative. Boring times are peaceful, uneventful, unextraordinary, and difficult (or at least uninteresting) to write about. So the fact that I have decided after all these years to do some serious semi-public blogging means that something happened in my life that was unfortunately “interesting”.

Our saga begins at 9:30 p.m. on August 7, 2006 when I started developing some nasty stomach cramps and decided to go to bed. Although I used to stay up until 11 p.m. almost every evening, in recent months have been hitting the rack about 10 p.m. so this was only a little bit early. Dad picked me up using our trusty Hoyer patient lifter. While lifting me, my back brace does a pretty good job of protecting my insides from getting jostled around too much. However once in bed when Dad took my brace off we had to be really careful while undressing me because my belly was very tender.

I took some Gas-X and some Tylenol but it didn’t help much. I took some more and it may have helped a little bit. I eventually developed chills and fever of 102.5 by about midnight but eventually the Tylenol brought that down. I gave serious consideration to going to the hospital but I hated to do that unless it was absolutely necessary.

I wasn’t really sure what was wrong with me. About 15 years ago I had a couple of flareups of diverticulitis and although this was almost as bad as those, I didn’t really think that was my problem. I’ve been having lots of constipation lately but ironically the past two days things had been moving rather well.

I was also starting to feel some back pain in the left kidney area which could have been a sign of a bladder infection. Urinary infections are a constant battle for me. My urologist has given me a standing prescription for Levaquin antibiotic that I’d keep in stock. However just 11 days prior to this I thought I had some sort of infection coming on and assumed it was urinary. I’m supposed to start taking the antibiotic and then send him a urine sample to make sure that’s what it really is. This time I didn’t do that. We were getting ready to go to the Lake for the weekend and I was pretty sure what I was doing so I just took the antibiotic for 10 days and it seemed to work. I finished the antibiotic on Sunday, August 6 and by Monday night August 7 I was running a 102.5 fever. Whether it was urinary or not, it was pretty obvious I was taking the wrong stuff for whatever was ailing me. Eventually things settled down and I got to sleep somewhere around 2:30 a.m.

I woke up about 6:30 a.m. and still was feeling terrible. I knew I needed to see a doctor but my belly was so sore that I couldn’t imagine getting wrestled around into my back brace and trying to set up in my wheelchair considering the pain I was having. That meant to see a doctor it would mean an ambulance trip to the emergency room.

The last time I went to the ER with abdominal pain was probably a year and a half or two ago. Like this time, I wasn’t sure if it was urinary or intestinal. In that previous visit, I think it was probably both because bladder infections don’t give me that kind of pain. However that day that urine sample came back positive. They also came to the conclusion somehow that I had a partially blocked bowel and concluded I needed an enema. They pumped me full of an enormous amount of fluid and got absolutely nothing out of me. I was pretty sure I wasn’t blocked but they were convinced I was. My belly was somewhat distended but we never did figure out why. They sent me home with antibiotics and nothing else ever came of it. All I knew was that if I ended up in the ER again they were going to have to do a pretty serious job of convincing me before they came at me with that enema hose again.

After talking things over with my Mom and Dad I decided we really needed to go to the ER and figure out what was going on. The pain wasn’t nearly as bad as the night before but it was still too much to put the brace on, get dressed, and sit up. It wasn’t exactly an emergency situation where you call 911. Mom was afraid that if we just called an ambulance on our own for a nonemergency run that the insurance might not want to pay for it. We decided to call my primary care doctor Dr. Steven Swinney to see what he thought. We spoke to his nurse and she agreed I needed to get to the ER and said that I should simply call a private ambulance and tell them I “was going on my doctor’s recommendation”. Language like that sounded like the kind of thing you can defend to an insurance company so that’s what we decided to do.

In our next installment we answer the musical cinematic question “Who You Gonna Call?”