NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
University of West Georgia Disclaimer
25 September 2002
It happened to me on Christmas Eve, 1997. I was eating breakfast while walking around the house opening the blinds, petting the cat, etc. Suddenly, there was an incredible jolt in my chest, as though I had been punched hard in the sternum. That was followed by what felt like painful spasms in my esophagus. I doubled over, fell onto my bed, and lay there trying to catch my breath. Having been diagnosed with Marfan syndrome in the seventh grade, I felt almost certain that I was experiencing an aortic aneurysm.
I had lost a number of relatives to aneurysms, including my mother. In fact, I had never known of anyone who had survived one. So I stayed on the bed and waited to lose consciousness, wondering how long it would be before someone found me.
After about five minutes things hadn't gotten any worse and it was getting boring just lying there. So I got up and brushed my teeth and fixed my hair. Then I tried to call my cardiologist at home but he wasn't there. His wife, a good friend, gave me his pager number and urged me to get hold of him at the hospital where he was doing rounds. I didn't want to bother him for what might, after all, be only a bad case of indigestion. I figured that since I had been eating nachos when the thing hit, maybe it wasn't my aorta at all. But man, the pain was enough to put me off nachos for life!
There was a doctor's office just a couple of blocks
from my house, so I drove over there. "I'm having severe chest
pain," I told the receptionist.
"Are you a patient here?" she asked.
"No," I replied.
"Well, here are some papers to fill out," she said.
"I have to sit down right now," I gasped.
"Okay," she said. "The waiting room is right over there. Fill out
the papers and someone will be with you shortly."
Mercifully, the nurse came and got me just a few
minutes later. Since I hadn't done any of the paperwork yet, we sat
at a table in the examining room so she could ask me the questions
and fill in the blanks herself. I tried to be as patient and
cooperative as I could while we waded through the family history,
but that pain was making it difficult.
Finally she said, "Okay, step on the scales and let's see how much
you weigh."
That's when I started to lose it.
"Step on the scales?!" I asked in disbelief.
"You've got to be kidding. I come in here with severe chest pain
and you want me to step on the scales?"
"Well," she said, "the doctor's going to want to know how much you
weigh."
"I am NOT stepping on those scales," I told her.
"Let's just guess how much I weigh. How about 160? That sounds
about right to me. Just put down 160."
She looked at me open-mouthed, and I think we would have had more of an argument, but just then the doctor came in and she left. He didn't even try to make me get on the scales.
I told the doctor that I thought I might be having an aortic aneurysm and filled him in on the reasons why I thought so. And I urged him to please call my cardiologist. He looked thoughtful, took my blood pressure in both arms, and made the phone call. I was trying to stay calm and not let the pain take over because I had an idea that it might not be good for whatever was going on inside me to get all tense and upset. Apparently I was too calm because when my cardiologist asked if I was in severe pain the doctor looked at me and said, "No, she doesn't seem to be." I thought the least he could have done was ask me how I felt!
They decided to send me to a nearby community hospital for a CT scan because they thought the wait would be shorter than if I went to the larger regional hospital. As it was, they couldn't get me in for another hour, so the doctor sent me home to wait, although he said to come back if the pain got worse and he'd give me something for it.
Just as I was leaving the doctor's office some friends came in the door. My cardiologist's wife had called them because she was worried. It was a relief to have someone with me and to not have to drive myself home. The receptionist was frantically reminding me that I hadn't paid my $10 co-pay for the office visit, but I had other things on my mind right then. I promised her I'd come back and pay it later, although I really thought there wasn't much chance that I'd still be alive to do it.
We hadn't been home long when I felt a painful ripping sensation as the aneurysm crawled down my back. We piled back into the car and headed straight for the hospital even though it wasn't time yet. On the way, we made a quick stop at the doctor's office to get that promised pain killer.
One of my friends went in to get the pain med for me since I was quite concerned about moving around too much. At first the nurse wouldn't bring it out and insisted on my going inside. My friend finally convinced her to bring it out to me. Keep in mind that it was Christmas Eve and I live where it gets cold in the winter. There was a lot of snow on the ground. The nurse came around to my door, opened it, and said, "Get out of the car and pull your pants down." It was cold out, we were on the main street in the middle of town, and I was trying not to move around. So I said I wasn't getting out and begged her to give me the shot through my jeans. I promised not to sue if it got infected. She wouldn't do it because it wouldn't be sterile. I asked her for the syringe so I could inject myself. She wouldn't give it to me. The pain built to the point where I couldn't wait any longer. So we drove away and left her standing in the street with a loaded syringe in her hand.
Fortunately, the small hospital was only a few minutes away. We pulled up to the emergency entrance and I went right inside. The receptionist called the doctor and he came out immediately. But he didn't come out to treat me; he came out to say that my cardiologist had called and I was to proceed directly to the larger regional hospital. That hospital was well over 30 minutes away, and I was afraid that the pain would get unmanageable before I got there. So I asked him for some pain medication. He replied that he couldn't do that because if he gave me medication he would have to open a chart for me, which he didn't want to do. As an aside, the small hospital was a part of the same system as the large hospital. Having worked for that system, I was aware that the entire system was on the same computer mainframe. A chart opened at one hospital would also be used by the other hospital. So that excuse was pure laziness on that doctor's part.
As we were leaving the emergency room, the doctor came running out and said, "I AM prepared to stabilize you." I thought to myself, I'm conscious, I'm breathing, I'm walking, I'm talking. What's to stabilize? And I wasn't too eager to have this guy doing anything to me. So I said no thank you and we got in the car and left. I found out later that he called ahead to the regional hospital and told them that I had refused treatment.
All the way to the regional hospital I kept wondering aloud if we would get there and find out that this was nothing more than the flu or indigestion. I could just imagine myself causing all this drama and then having it be nothing.
When we arrived, someone met us at the door with a wheel chair, which was really welcome by that time. It was hard enough to fight the pain and stay calm, let alone having to think about standing or walking. We got through triage rather quickly and into a cubicle. They gave me huge amounts of morphine, which really didn't touch the pain. But I appreciated the effort. My cardiologist ordered a CT scan, which I got without even having to wait. It was agony to lie on my back by then, but he said I had to do it long enough for the scan. I managed it somehow. The aneurysm showed up clearly on my ascending aorta, over the arch, and on down to about my liver.
My cardiologist gave me some choices. He said that I had to have surgery, that I could go to Chicago, Ann Arbor, or there was a good surgeon locally who could do it. I knew I was going to die and I was fine with that. I didn't see what difference it made who did the surgery under the circumstances, so I chose to go with the local surgeon. The real selling point was that he could do the surgery immediately, which meant the pain would stop SOON.
The surgeon came by and told me that I had something like a 30% chance of surviving if I didn't have surgery. I wondered who would want to survive if it meant living with that kind of pain. This was by far the worst pain I had ever felt in my life. It had entirely taken over my being, and every thought I had seemed somehow connected to the pain. My friends just about wore their hands out massaging my back because that was the only way I could stand to be in the same body with it. If they quit even for a minute I would beg them to keep on.
As we headed into surgery the morphine finally started sending me to la-la land. I do remember that one of the pastors from my church showed up just then and wanted to pray. I was in a quandary because I didn't want to embarrass him by saying no, but I was so focused on controlling the pain that I didn't want to break my concentration to listen to him. So I told him to make it short. Fortunately, he wasn't offended by my brusqueness.
The next thing I knew, I was swimming up through the cottony dark of my subconscious. I could vaguely hear a man moaning and groaning, something about no, you can't do this to me. I was hazy at that point, but I remember wondering why he was so upset when I wasn't upset at all. I found out later that the man was my surgeon, spending Christmas Eve with me instead of with his family because I wouldn't stop bleeding and he thought he might have to open me up again. I guess it was touch and go, but the bleeding finally stopped and I went to CCU without being opened up.
That night was miserable. The ventilator tube was flopping around and gagging me, and the rest of the apparatus was none too comfortable, either. I kept holding on to the vent tube trying to keep it still. The nurses would warn me not to pull it out and I would shake my head no, that I wouldn't. But I must have occasionally acted as though I was going to because they would periodically discuss whether they should tie my hands. That really put me into a panic. I thought that if they would only tape the vent tube so it wouldn't move I wouldn't need to hold it. Since I couldn't talk, I took one of the nurse's hands and tried to spell words on her palm to help her see what the problem was. She didn't understand what I was doing and yanked her hand away. The day nurse finally came in and things went uphill from there. She gave me a pen and paper so I could communicate and helped me solve my gagging problem.
Two days after surgery I moved out of CCU onto a cardiac surgical floor. After all the attention in CCU the lack of it on the floor was a bit of a shock. In fact, one of the nurses stuck her head in my door at one point and said, "You might have noticed that we don't always answer your bell right away. That's because we're used to taking care of really sick patients around here, like, you know, people who've had by-passes." I thought that was pretty interesting, but I didn't comment. The balance of power was definitely not in my favor at that point.
Surgery was on Wednesday, I went home on Sunday, and on New Year's Eve (Wednesday) I walked over to the local doctor's office and paid that $10 co-pay. Three and a half weeks after surgery the cardiologist sent me back to work. If I had it to do over again I wouldn't go back so quickly, but obviously it didn't kill me.
They only repaired the ascending aorta in that surgery and hoped that the arch and descending aorta would self-heal. Unfortunately it hasn't, and I now have a 6.4 cm false lumen. We're still watching it, but I know surgery is inevitable. Who knows what will happen this time around, but it can't possibly be as good a story as the first time! Whoever said that people don't take women with chest pain seriously was absolutely correct. And that goes double if you're a young woman.
All I can say is, thank goodness for friends, family, and God!
Update: 8 Dec 2002
I will be checking in to the University of Chicago Medical Center on Tuesday, December 10 for a heart catheterization. Then, on Wednesday, the 11th, I'll be having my entire aorta replaced. Dr. Valluvan Jeevanandam, Chief of Cardiothoracic Surgery, and Dr. Bruce Gewertz, Chief of Vascular Surgery will be collaborating. They tell me that if all goes well I'll be out of the hospital about five days after surgery. I'll let you know how it went as soon as I am able.
Update: 18 Jul 2003
The time has come for me to give an update on my surgery. On December 11 the surgeons at the University of Chicago Medical Center replaced my descending aorta with a Dacron mesh graft. They had initially planned to do a much more extensive surgery, including the arch and abdominal aorta, right down to my legs. However, they were pleased with the quality of the aortic tissue and elected to do a smaller surgery. They told me that even though the rest has dissected, they feel it will hold up and possibly never need to be repaired.
When I say "smaller" surgery, I use the term advisedly. What they did was still quite strenuous! They did a thoracotomy, meaning that they made an incision around my left shoulder blade and on around my side, then separated the ribs to get at the aorta. Having had a sternotomy the first time, I can tell you from experience that it is far preferable to a thoracotomy when it comes to pain and comfort. The morphine pump is a wonderful invention.
I had a couple of complications that slowed me down a little. The first thing we were aware of was a "giant" hematoma that formed at the top of my left lung between the lung and the chest wall. That made it extremely difficult to breathe on my own. On Saturday (the 14th) I was taken back into surgery where they attempted to suck the hematoma out of the chest cavity. A couple of days later I was successful at getting off the respirator and moving out of CCU. The hematoma did fill up again and in mid-February I had to go back to Chicago and have another surgery to clean it out. This time it seems to have worked because I can breathe more easily and my chest x-rays look much better.
The second thing we became aware of was the fact that I had lost my voice. Everyone was very reassuring at first, telling me that it would clear up in a couple of weeks. Besides not being able to speak, I also had trouble swallowing. I came to dread having to swallow anything because each time it would go down the wrong way and I would choke and cough.
Just before I left the hospital the doctors had a specialist from the Speech and Swallow clinic come in and take a look. He ran a scope up through my nostril and down into my throat (not a comfortable procedure) and videoed my vocal folds while I counted. Come to find out, my left vocal fold was totally paralyzed. The specialist told me that in 8-12 weeks I should get my voice back again. In mid-January the surgeon told me that he had spoken with the throat specialist, and they felt that it would take four months. In February my local surgeon told me that it could take up to six months. In my own research, I found that it can sometimes take up to a year for someone in my situation to get their voice back.
Apparently it's not all that uncommon to have damage to the recurrent laryngeal nerve during open chest surgery. That is the nerve that controls the vocal folds. There's a left one and a right one, which loop down into the chest. The left one crosses the aorta right where the pulmonary artery branches off, and that's where my aneurysm was the largest. So they had to manipulate that nerve during the surgery and it didn't like that. They don't think they cut it, but they can't guarantee that they didn't. If they did cut it, of course, my voice is gone. But it seems to be slowly starting to come back, so I'm hopeful. I can swallow now without choking, which is a huge improvement. Not being able to speak is not a good career move for me because I'm a broadcaster. But my employers have been very patient, thank goodness.
A few months after surgery, when the swelling was going down, I became aware that the groin incision had herniated. I went in and had that repaired at the end of April. That surgery was a piece of cake compared to the others.
One of the biggest challenges has been dealing with my health insurance company. Even though I was preapproved for my surgery, they keep denying certain things. And at first they were treating the bills as though I had gone out of network, which meant that I would be personally liable for close to $100,000. Our Human Resources department got that straightened out, and they're helping to get the rest taken care of, too. I think I've been sent to a collection agency, but there's not much I can do about that. It will eventually all get taken care of.
I'm feeling better every day. It was a surprise to have so much numbness, including my entire left chest and left thigh, but some of that is gradually clearing up. I've also had muscle cramps in my shoulder because of having had all of those muscles cut. The weight of my arm can cause spasms after just a little bit of activity. But I've been assured that those will eventually go away, too, and they have been a little better lately. After my first surgery I had severe depression, but I've been fortunate this time and that hasn't happened. My family and friends have been wonderful, and I feel very blessed.
Update: 17 Dec 2003
I just got back from a visit to the throat specialist - always a treat with that scope going up the nostril to look at the throat. At any rate, the recurrent laryngeal nerve still hasn't regenerated, and he says there's only about a 5% chance that it will do so. I did have a gelfoam injection in September that enables me to have some voice, and that should be good for 3-6 months. Once it wears off I can either have it done again, or I can pursue something more permanent.
It's disappointing not to get my voice back, and my whole professional life has changed. I am still able to work at the radio station, but rarely, if ever, go on the air anymore. But there are worse things in life. At least I didn't have a stroke or paralysis of a more drastic type.
Update: 11 Mar 2004
I have some exciting news to report. On Monday (the 15th) I'll be heading to the University of Michigan hospital in Ann Arbor for a vocal implant. The odds look pretty good. Vocal function can't really get worse, and the doctor says that most patients report about 70% function after having this procedure (as opposed to about 30% function before having had it). I hope that I'll be able to develop a broadcast-quality speaking voice afterward. I know that I probably won't be able to sing again, but at this point I'll settle for speaking!
Update: 29 September 2005
I think it's time for another update. Getting a vocal implant was a real adventure. If you don't know (which I didn't until I needed one), a vocal implant is basically a wedge of plastic inserted into the larynx to hold the paralyzed vocal fold in place so that the healthy one can make contact with it and produce a tone. I've always been squeamish about having anyone touch my throat, so you can imagine how I felt about allowing someone to slit it...
I went to Dr. Hogykian at the University of Michigan in Ann Arbor. He was very knowledgeable, and gave me confidence that he knew what he was doing. They don't totally put you out for this surgery because you have to be able to vocalize while they're placing the implant to achieve optimal results. I was warned that the anesthetic would make me very disoriented. One of the "fun" things about the anesthetic was that it involved ramming a bunch of wadding up one's nostrils with the topical meds they were using. They ended up only doing my right nostril because I couldn't tolerate it in the left one. One of the topical meds happens to be cocaine, which I found to be vaguely amusing.
When Dr. Hogykian started making the incision in my throat I was still very aware of what he was doing, so they took me down another notch. I remember being asked to count, which I did. Then they asked me to do it again, and again. I got sick of it and thought to myself that I was just too tired to be bothered doing all that counting. After all, they were the ones who were supposed to be doing the work here. The OR staff spoke to me rather sharply to penetrate my stupor and get me to be more cooperative.
While I was in recovery, I discovered that they hadn't been lying to me about the disorientation. I kept wondering when I was going to have my surgery, and the staff kept reminding me that I had already had it. It took until about 9:00 that evening before I finally got everything back into focus.
The real kicker is that for several days I wasn't allowed to make a sound, including whispering. I went home, turned off the phone, and read books for about a week. I don't think I've ever gone that long without verbal communication before. Late at night I would sneak into my office and do e-mail, but that was it.
Regaining my voice has been a long road with lots of hard work. At first the implant was stiff and vibrated at a different rate from my healthy vocal fold, which made for an interesting flutter effect. It was recommended that I go to the U of M once a week and work with someone from their opera department. However, they OK'd my working with someone here at our local university, and after a lot of negotiation my insurance company was persuaded to cover that.
There are days when my voice sounds and feels totally normal. I can even sing a bit. I'm still working hard to remember the new habits and techniques I've been learning, but it's paying off. Folks who don't realize what happened, even old friends, don't know the difference most of the time.
Discussion, comments, or questions: Sharon Dudgeon
© Copyright 2002 Sharon
Dudgeon
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