My experience 

Besides getting married in 1997, I had major surgery to remove a section of my trachea.  Problems started in 1996, but it took almost a year to get a diagnosis.  This is what I spent almost a year working on curing.

It all started with a cough.

In August 1996 it got so bad that I went to the doctor’s office at our local clinic.  Keep in mind that I don’t go to the doctors unless I am really sure I need one. I met with one of the nurse practitioners there. She told me to get Robitussin, and if it is not better within two weeks to call.  I have never smoked a cigarette a day in my life, so this constant nagging cough was something that did not seem normal.

Two weeks later, I called. At that appointment, I saw my doctor. He walked into the office and said to me "you sound really good."  He took a chest x-ray to rule out pneumonia and thought that it could be an upper respiratory infection.  He prescribed an antibiotic and Halotussin, to "quiet my cough."  He told me not to be surprised if  this develops into asthma.

By  the end of August, I was still coughing so bad that I wanted to stick my fingers down my throat and make myself vomit, hoping it would stop the coughing.  I called the clinic and  talked with one of  the nurses, and she made arrangements for another prescription of antibiotics and cough medicine.

August turned into September, and breathing was becoming very difficult. Any type of exertion made me short of breath. I went back to the clinic again and met with the same nurse practitioner as I had the first time. She prescribed Albuterol, which is a bronchodilator, used by people that have asthma. She also ran tests for mono, Lyme disease and a CBC (Complete Blood Count). She suggested the possibility of seeing a specialist the next time I had to come in.  After a couple of weeks, the Lyme disease test came back as normal, as did the CBC and mono. Breathing is becoming impossible. It was almost like I had to remind myself to breathe, and if I talked for a long time, I had to suck in a breath of air in between words. When I was at work people knew that I was approaching them because of the wheezy sound I made. They dubbed me "Darth Vader" because that is what it sounded like. The shortness of breath was really beginning to affect me. One day I was so upset that I began to cry. My boss sent me home.  What was wrong with me???  At the end of the month I went back to see my doctor, he prescribed two new inhalers and Prednisone, and the Albuterol that I was already using.  I started using these new inhalers, and the only change I noticed was that they made me feel anxious all of the time. They weren’t working on clearing up my breathing.  I called the clinic and lost my patience with one of the nurses. I felt bad for doing it, but there was something very obviously wrong with me, and I didn’t think that it was asthma. She made an appointment to have me see my doctor the next day. At that appointment I asked him to refer me to see a specialist. He seemed unwilling, but I refused to leave his office until he did. I was being sent to a pulmonary doctor. Not who I thought I needed, but it was a start.  The appointment was six long weeks away.

I saw my doctor two weeks later, figuring that if the medicine was supposed to help me, that it would have by now. While at that appointment, my doctor told to increase the puffs I took from the inhalers I was using each day.  When I was there, I asked him if I should see the pulmonary specialist. He said "absolutely."  Why was he so unwilling to give me that referral, now wanting me to go? The appointment with the specialist was still a month away.... the drawbacks of living in an area where the local hospitals have one or two doctors for a specialty.

At the end of November I saw the specialist. Finally I knew we were getting somewhere. He listened to my lungs and said they sound clear, and other than the shortness of breath  I don’t have the symptoms of someone that has asthma.  Asthmatics usually wheeze while exhaling.  I wheezed on the inhalation. He said I could discontinue the use of the inhalers. I was so happy to hear that! They just wierded me out. He made arrangements for me to go to the lab to have blood drawn for a thyroid function test, then over to the x-ray department for a picture of my neck. A few hours later he called me and said that he saw my x-ray and there is a shadow with some calcification near my thyroid, and that he consulted with the Otolaryngology specialist, where I should be going next. His nurse was making the appointment to meet with the Otolaryngologist. She got me an appointment for December 18. That was just too far away for me. If there was something in my throat I couldn’t wait that long to find out what it could be. I called my regular physician’s nurse, and explained to her the situation, and was going to see if I could see the specialist that removed my tonsils about 10 years ago. He is at the Dartmouth Hitchcock Medical Center  (DHMC), in Lebanon, NH. That is the hospital that a lot of referrals in my "rural" area go to. I wanted to try to save some time and go there instead of dealing with the small, local clinic. I was able to get an appointment a week sooner up there. A week is a week, but I felt  more comfortable dealing with them.

I don’t like to complain, but I had to vent my frustrations about not getting anywhere with the treatment or lack of,  I had been receiving. I felt the whole process to get to a specialist took too long. I was scared, angry and upset. I knew there was something very wrong with me and the local doctors couldn’t help me.  I wrote a long letter to the medical director of the clinic documenting everything to this point. He agreed that I should go to DHMC.

When I got to DHMC I met with a very caring physician’s assistant. He listened carefully and then did a direct laryngoscopy, (a fiber optic instrument that goes through your nose to look at your throat more closely.)  I was a little apprehensive about having that done, but he had something to numb my nose and throat and it was nothing. He also said that he had it done himself so he knew what it would be like for his patients. That said a lot to me. He could not see anything out of the ordinary, so he called in the doctor that had removed my tonsils. They decided to order a CT scan of my neck area.

I had the CT scan done, one without the contrast dye and one with. The contrast dye is injected through an IV and made me feel very hot. I could feel it move through my body. It was not unpleasant, but nothing like I had experienced before. The dye is used so the doctors can get a better picture of the area that is being scanned.

A few days later they called and said that a soft tissue density did show up on the CT scan and wanted me to come in for a bronchoscopy.

A bronchoscopy is a minor surgical procedure where they use a special instrument to look past your vocal cords, into your trachea.  They also wanted to take a biopsy of whatever it was in my throat that should not be there.

Ten days after meeting with the specialist at DHMC, I had my first bronchoscopy. They discovered a stricture in my trachea, measuring 2.5 to 3cm long. I wound up spending the night in the hospital and the next 10 days waiting for the pathology report. (All of this happened during Christmas time.)  I had a follow-up with my doctor on New Year’s Eve day. The pathology report said that it was not cancerous, but simply scar tissue.  He told me that I am a mystery to him that he hasn’t seen anything like this.  He decided the method of treatment would be laser surgery.

In the middle of January I had my second bronchoscopy with laser surgery. Along with my specialist, Dr. Nathan Guerkink, the Chief of Otolaryngology, Dr. J. Oliver Donegan was present at the laser surgery.  After I woke up in recovery, they told me the lasers were not firing correctly and were not able to burn away the damaged area, but were able to dilate it instead. I spent another night in the hospital and noticed a change right away.

A few weeks later my now  husband and I went on vacation to Disney World in Florida. It was a wonderful trip and thanks to the surgery, was comfortable the whole time, no wheezing, no shortness of breath, nothing.  While we were in Florida, Ray asked me to marry him. It was a perfect trip.

In late March my friends and coworkers were telling me that I was beginning to sound wheezy again. I was trying to ignore it, but noticed it myself. I was sucking in air in between words whenever I spoke and climbing two flights of stairs winded me. I called my specialists at DHMC and explained that I felt I needed to come back and that another CT scan might be something to consider. They made arrangements for another CT scan and an appointment with them.  While I was meeting with them, I felt like I was being grilled, like they didn’t believe that I was beginning to feel lousy again, that what people were telling me was influencing the way that I was feeling.  We walked out of there with a huge dark cloud over our heads. We both felt the same way about it seeming like a wasted appointment.

A few days later Dr. Donegan calls me and said that they reviewed the CT scans and the growth was back, and they were going to find me another specialist, this  time  in Boston. I anticipated that going to the specialist would take a period of several weeks to get an appointment, but I had one within three days with  Dr. Hermes Grillo, a thoracic surgeon at Massachusetts General Hospital. I was scared and excited at the same time.

Ray and I made our first trip to Boston in mid April. I had the most extensive set of x-rays ever taken. I asked the technicians what they knew about Dr. Grillo. Both said he’s excellent, has patients coming from all over the world to see him. It sounded a little outrageous, but I filed it away in the back of my mind.

He reviewed the x-rays first, then we met. I finally had a diagnosis! Idiopathic Tracheal Stenosis. Translation for those of use not fluent in medspeak- Narrowing of the trachea for unknown reasons. He said that most tracheal stenosis is caused by trauma, exposure to smoke/chemicals, etc. And since I had been exposed to none of them, they don’t know what caused it.  It is a rare disorder and  he has seen only about 75 of these in his 30 years of practice, and most of the cases have been on females.  He said that most of the patients that he sees are ones with truly unique and unusual problems.  From what he could see from the x-rays, he was concerned about the size of the mass, as it was one of the largest he has had to deal with.  So he could get a better look of what he would be dealing with, he scheduled me for another bronchoscopy.

While Ray and I were in Dr. Grillo’s office, he had to take a phone call. I took a look at the awards of recognition hung on the wall and propped along the window sills. This man was most definitely world famous. He had awards from all over. I was amazed.

We walked out of there with an appointment for the bronchoscopy and a glimmer of hope that this man could help me.

A week later I went down to Boston for the bronchoscopy, but did not have to spend the night. While I was waiting to leave, one of the nurses there told me that "if Dr. Grillo can't fix it, no one can. He is the best." Before we left, I was told to call his office later in the day to talk with him.

That afternoon I called his office. He said that he measured the stricture to be 4cm long, larger than what DHMC said. He said that he tried doing the dilatation while he was down there, but the stricture was kind of rubbery and bounced back into place. Then the whirlwind of decision making started. I needed to have an operation called a Tracheal Resection, where they cut out the bad part and sew the two good ends back together. The only positive was I had plenty of good trachea below the stricture for reconstruction. The negatives were: it started right below my vocal cords and got very tight, and that removing the lower part of my larynx may have to be done. If I decided to have the surgery, there was a chance that the area they sewed together could scar. I may no longer be able to shout. I may lose my voice for several months. I had a pessimistic 70% success rate. Or the operation would be a failure altogether.  There were not many alternatives. I was scared. I told him to schedule the surgery, and he said that is fine, but if you change your mind, please give me some notice. (Meaning, not the day before.)
That night I went to bed with a heavy heart. I didn’t know what to do.

When I awoke in the middle of the night, I was in severe pain. I felt like my whole body was one huge muscle spasm. It hurt to move my arms.  It hurt to move, period. First thing in the morning I called my family physician’s office. They told me to call Boston.  I managed to track down the anesthesiologist that was with me for my bronchoscopy and he seemed to think it was a reaction to one of the drugs they gave to me when I was put under. He wanted to check with a colleague of his, an expert in musco-skeletal disorders just to be sure. A short while later he called back. He told me, you sound like you are near tears, this must be quite bad. It was. I like to think of myself as tough, and this was awful. He wanted to be sure that I was not running a temperature. When I found that I was not, he said that it definitely was a reaction to that drug, and to be sure to let the physicians that I deal with in the future know that I had such a reaction so I don’t get that drug and reaction again. I spent the day with a heating pad. My family doctor called a prescription in for Naproxen for me and that really seemed to help. Later that afternoon the anesthesiologist called to see how I was doing. I told him about the naproxen and he thought that was a good idea.

Shortly after that bronchoscopy I was at the bookstore and discovered a book called "Sick and tired of feeling sick and tired" by Paul J. Donohue, Ph.D. and Mary E. Siegel, Ph.D. It was exactly how I felt and had written that in my journal the day before. In the back of the book is a listing of sources of information and support groups. Most of the diseases mentioned were commonplace, but there was an organization mentioned that was a clearinghouse of information. It is called the National Organization for Rare Disorders (NORD). I called the number and they had an article on the disorder. I asked them to send it to me. A week later I got it.  Every time Dr. Grillo’s name showed up, it got highlighted. It appeared more than any of the other doctors. I had something in front of me, black and white, that described symptoms, which were consistent with mine and different surgical procedures used to correct it. I was beginning to feel better about having the surgery, but still uncertain if it was really the right thing to do. The disorder was not life threatening, but certainly life inhibitive. There were so many things I wanted to do but couldn’t because I would get so winded.

Dr. Grillo’s secretary called me with a surgery date and an appointment for pre-surgery testing. Ray and I made the trip down to Boston 6 days before my surgery was scheduled for the testing. Basically the testing is done to make sure you are healthy enough for the surgery. I had a chest x-ray, several vials of blood taken, blood pressure, weighed, I met with an anesthesiologist, a nurse about my hospital stay and a Physician’s Assistant for Thoracic Surgery. She explained what they would do during the operation and drew me a nice little diagram to better explain things. She said that I was lucky the laser surgery didn’t work. It would have done more harm than good! She also told me that people with Tracheal Stenosis are oftentimes diagnosed with asthma.  They told me that because of the nature of the surgery, one night would be spent in the Respiratory Intensive Care Unit  (RICU), and would be in the hospital for about a week.

On the way out the door, I grabbed one of the publications that the MGH puts out. Reading material for the way home. A few pages into it I found an article titled "We’re in the right hands." I started reading it, and it was an article written by a mother of an infant with the same condition I had. Then I turned the page and saw a picture of my doctor with the little boy and his family.  This man saved the little boys life.  I took it as a sign.  It is safe for you to have this operation. I shared it with my family, friends and co-workers. They all had the same reaction as I had.

Then it was waiting for that day to come along. I made arrangements to have a friend look in on my two cats and apartment while I was gone. Ray would watch my dog.

Then the big day came. I was so scared. Ray stayed with me until they brought me to meet the anesthesiologist. I gave him a hug and a kiss and was on my way to the operation that would hopefully make me a lot more comfortable.

I had a nice anesthesiologist that gave me my IV.  He also tried to get music for me to fall asleep to, but because of the equipment, the radio station  I wanted (classical- WCRB) would not come in. Janice, the Physicians Assistant I met with came down to see me before I went into the operating room. We chatted for a few minutes, then I went into the operating room.  Dr. Grillo gave me a recap of the operation and then he was ready to roll. They stuck the heart monitor things on me and then I got an oxygen mask. The last thing I remember is the prickly feeling I have had before when being anesthetized.

Then I woke up in the RICU. It was hot and my hands were tied to the sides of the bed so I would not pull out the breathing tube. I had something called a chin stitch. What they did was make two stitches in my chin and two stitches in my upper chest with a string connecting the stitches to keep my head flexed forward.  This was not very comfortable. I would be like that for a week 24-7. They gave me morphine through my IV and I remember vomiting. They said that is a common reaction to morphine and I would be ok. Ray was by my side wiping my face with a cool cloth. It was so incredibly hot in there, I decided that if there is a hell, this place is it. I had drains where my incisions were with these little bottles attached to it. I didn’t like looking at the gunk inside them, so I asked the nurses to cover them up. Ray said that the operation took 2.5 hours longer than they expected (6.5 hours total) and that there was a lot of swelling, which is why I had the breathing tube in. On my legs were air boots to help keep the blood circulating, and I would be getting two shots of Heparin (an anti blood clotting drug) each day. I had a Critical Care Tech named Rose-ann and a nurse named Annette that night. They got me situated with a note pad so I could communicate with them and then I fell asleep for the night. They came in periodically to check my vitals and my general well being. Other than that I don’t remember too much from that first night.

Early the next morning Rose-ann gave me a bath and found me some nicer looking johnnies from pediatrics. I am a petite person, and swam in the regular sized ones. Then the day staff came along, doctors did their rounds and my true experience of the RICU began.

While the doctors were doing their rounds, I could hear them talking about me outside the curtain.  Dr. Grillo removed 6cm of my trachea and reconstructed the floor of my larynx  (Your trachea is only about 10cm long), and he was the only doctor that could have done this operation. I understood then that it was a very difficult surgery and I was in the right hands. If I had gone to another doctor, they might have been unable to help me.

I was still so hot, but not running a temperature. Someone located me a small fan and that helped.  I kept a cool cloth within reach.

I met with a respiratory therapist that was going to help me with coughing exercises and something called suctioning. Basically what they did was take me off the ventilator, placed a small amount of saline in the breathing tube forcing me to cough. Then a smaller tube was inserted into the breathing tube forcing me to cough some more. It was exhausting work. I wrote a note to her telling her that I thought she has a crummy job. She replied that she doesn’t have a crummy job, she helps people get better, and that makes her happy.

Someone stopped by and said he thought my breathing tube was coming out the next day. Music to my ears.  Then a doctor stopped by and said that the breathing tube was to remain in until Tuesday.  Six long days. The swelling is too great and they don’t want to take a chance. I felt defeated.

I was moved into another part of RICU where I had a television. I usually don’t watch it, but it helped distract me. It is a loud, hot and busy place with little privacy.

Later in the afternoon Ray came to see me. I had been sleeping and don’t know how long he was there for, but tagging along with him was a giant Tigger balloon. Tigger is my favorite Winnie the Pooh character  and it really perked me up. He helped me stay as comfortable as I could. I don’t remember falling asleep but when I woke up the next morning found a note from him that he left shortly after 7PM. I fell asleep on my honey...

I was encouraged to sit in a chair each day.  That was accomplished with no great effort, other than maneuvering with your head tied up. When your head is tied to your chest, it is very uncomfortable. I had to hold it up with my hands and if Ray was around during the chair sitting, he held my head up for me. The next day they wanted me to try a short walk. They have this contraption that is basically an adult walker. If you get tired there is a seat you can sit on and they can wheel you back. I managed to take a few steps and they were happy with that. I was at least mobile for a little while.

The coughing/suctioning treatments continued a few times a day. It was hard work. One time after doing it I cried.  I was tired, scared and wanted to be at home in my own bed. After that, they gave me a light sedative and it helped me relax more and I was far more cooperative about having the treatments. I had to have them, as awful as they were.

The nurses and Critical Care Techs were wonderful. They would come by and visit for a minute with me. I scribbled out my questions, comments and thoughts. My hair kept getting in my face.  One of them tied my hair back with some gauze just to get it out of my eyes.

Then the breathing tube felt a little different. I described it as bubbly. I had something called an air leak. That meant the swelling was beginning to go down...

One of the nurses was trained in something called Therapeutic Touch. What it is, is they move their hands just above your body looking for "hot spots." On the hot spots is where they focus their energy and visualize you as healthy. I asked to see him and he gave me a treatment. I was much more relaxed afterwards.
After a couple of days my iv’s were beginning to hurt. Time for a new one. By the time I got out of RICU my IV’s were moved three times.

I did maintain a good sense of humor while I was there. I remember writing that I wanted a margarita when the nurses asked me if I needed anything.  It wasn’t the alcohol that I craved.  It was the sweet and sour that quenches your thirst just right.

One night when Rose-ann arrived I wrote to her that I liked the perfume she was wearing. She gave me a weird look and told me what it was.  I didn’t know this until the morning that I was discharged and she came up to see me, but someone that is intubated with severe swelling has no sense of smell. She knew the swelling had gone down, because I could smell.

On Memorial day my parents were coming to visit with Ray. I took a walk, sat in the chair and got all of my coughing treatments out of the way before they arrived. I got a quick bath and a clean johnnie. I really didn’t want my parents coming and seeing me hooked up to all of this equipment. We had a nice visit and after they left I was glad they showed up.  That night one of the therapists brought me for my daily walk.  I was feeling so good that we looped around the RICU and down the hall.  Rose-ann was just coming in,  saw me in the hall and gave me a big hug because she was so proud of that accomplishment.

And Tuesday was coming... the big day.  The day the tube comes out.  Sleeping that night was nearly impossible.  The nurses encouraged me to sleep and gave me a sedative, but it didn’t do much.

Bright and early, Kim came in.  She was an anesthesiologist whose last name I cannot remember.   After you deal with these people so much, they are comfortable asking you to call them by their first name.  The only one I would not do that to was Dr. Grillo. She told me that she would be with me the whole time and because of what they were doing, I would be awake, but they would give me something that would prevent me from remembering it happening.  She patted her jacket pocket and said they are right here, pointing to the two needles.  I wrote to her- don’t lose them!  They all laughed and she promised me that she would not lose them.  A short while later, off we went.  When they take you off a ventilator, they attach something called an AMBU, which is a bag that works as a manual ventilator of sorts.  On the way to the operating room, I AMBUed myself.  Dr. Grillo got such a kick out of that... he said in all of his years of practice he never had a patient do that before.  It was my way of getting some control.  I remember writing a note to the nurse that I was scared, then everything got fuzzy and a few minutes later when I woke up, I was breathing on my own and the chin stitch was gone.

Back to the RICU we went.... someone came and took away my ventilator...  A while later a doctor named Keith came by. Keith asked me to say something.  He got a weird look from me and a written note saying "What?".  He told me to say hello... I repeated hello and it sounded so weird.  He told me not to talk until I saw him the following day.

One of my nurses told me that they were ready to ship me off to Ellison 19, which is the thoracic surgery floor, where anyone that has had this type, or maybe lung surgery would go to.  What a place that was... it was a newer building, bright and sunny and what a view of Boston I had!  My room overlooked a park and the Charles River.  Down the hall was an atrium with comfortable furniture and another nice view of the city.

Joe, another doctor, came up to see me and seemed to think that I could go home the following day.  He was promptly told that I was not comfortable with that and I thought it was better to wait.  After all, I just had major surgery and hadn’t even eaten anything yet!  Joe was a good doctor, he was just a little dry and direct.

I went into the bathroom and saw myself in the mirror for the first time.  I looked like Frankenstein.  The only thing missing was the bolts on either side of the neck.  Until then, I didn’t know that there were actually two incisions.  No stitches, just held together with tape.

My nurse told me that I would be able to shower in the morning...  Good thing, Ray and a friend of mine were coming.

The next day the nurse covered my incisions so they wouldn’t get wet.  And I took a long, hot shower.  The nurse actually came in to make sure I was ok because I had been in there for so long.  Hey, it was the first time in over a week I got to take a shower, I was enjoying myself!

After that, the nurse and Janice, the Physicians Assistant came in with a container of Jell-O and were going to teach me how  to swallow food again.  Until then, the process of eating was not really paid attention to.  I couldn’t let the Jell-O dissolve, but had to swallow it when it was on the back of my tongue.  It was kind of amusing, really.  And until they knew that I could swallow foods, the IV had to stay in.  Something to do with liquids getting "lost" in your mouth and being harder to swallow.  It was proven to them that I could eat, so I got breakfast.    And lunch.  When you are in the hospital, Jell-O is your friend.  Expect it with every meal, even if you don’t want it.

The doctors gave me the ok to use my voice, with caution- so away went the notepads.  The way I sounded, I was sure that the local crime bosses were going to want to hire me, or that I was about 100 years old and smoking since I was 13.  It was kind of funny hearing me sound like that, but it didn’t matter, talking was what was important, not what or who I sounded like.

Later on in the afternoon Ray and my friend and co-worker  Lisa showed up with real pajamas, a laptop computer so I could communicate with my friends at work, reading materials and cards from friends at work.  We had a nice visit and my dinner came.  They got food from the cafeteria and we all ate together.  It was nice sharing a meal with people that I loved.  While they were there we noticed that camp was being set up in the park next to the river.

They went home and I spent most of the night talking with the night nurse.  She was about my age and a lot of fun to be around.  She was also getting married later on in the year.  The people setting up camp were staying there for the night, there were fires dotting the dark night sky.

My parents and Ray came to visit the next day... they were pleased to see how well I was doing since the last time they saw me. The camp that was being set up included an assortment of horses and old fashioned tents. Something to occupy my imagination the next day or two!  We also found out that day that the following day, Friday, I was being set free.  After my parents left Ray brought me down to the RICU so I could see the staff down there... When the elevator stopped on a floor, a foreign woman exited, and as she did, she said to me "God Bless you."  I will always remember her face. The nurses that took care of me said that I looked great and it was good to see me walking around and hearing me talk.  Now if I could only stand up straight. After having your head tied up for so long, it’s nearly impossible.

Friday morning, I was awaken by Dr. Grillo. He wanted to see about removing the tape from my incisions.  I was so afraid it was going to hurt that I gritted my teeth at him.  He admonished me for that stating- after all I did to you, you are worried about getting some Band-Aids pulled off?  The man had a point.  He said he would send in an intern to take the two little stitches out, and a nurse would be in later to remove the rest of the tape,  then shower to wash off the adhesive.  No problem!  Rose-ann came to see me before she left to go home... she was so wonderful to me during my stay at the RICU, and I will always be grateful that she was there to help me.

We discovered that the camp that was being set up was a civil war re-enactment.  It was interesting to see the old uniforms and the dresses that the ladies wore.  Ray called to see what time I was being set free and he thought he had the wrong room, because I didn’t sound like me.  I thought he was being his usual clown like self and playing a joke on me... finally he got it and said he’d be down to get me.

So Luke, the intern comes in an takes out my little stitch.  Then a nurse comes in and takes away the tape.  As adorable as that doctor was, he could have removed both and there would have been no complaints here.   A physical therapist walked 2 flights of stairs with me to make sure that I really could maneuver them before I went home.  I shower, then get all sorts of staffers come in because they want to see the civil war re enactment... it was nice having the company.  Ray gets there, we get my stuff and I tell the people at the nurses station that I have had all of the fun one could possibly have for 11 days and I was going home.  I had to sign a few things and I was set free.  For the first time in over a week, I got to breathe fresh air.

We got home and the next night was the International Festival taking place in the town that I work in.  I wanted to go just to get out and see a familar face.  I did, and it was one of my favorite co workers.  We got ice cream sundaes and then watched the fireworks.  Because I couldn’t tilt my head back, doctors orders and my body just couldn’t do that yet, I laid on the ground with my head in Ray’s lap.  It was 6 weeks later that I was actually able to stand up straight.

During the recovery, I met friends from work for lunch on occasion and also got hooked up on the internet, thanks to my parents.  The internet kept me sane during the day when I would normally be at work.  Which I did do, the second week of July.  Those co workers that knew what I went through were sympathetic to my gravelly voice and were happy to have me back.  Others that did not, said that as soon as I was feeling better, my voice would be normal again, or if you are so sick still, why are you here.  They didn’t understand that the voice change was a direct effect from the surgery and that might not change.  It was tiresome explaining that over and over again.

At the same time I returned to work I had my follow up with Dr. Grillo.  He was so pleased at the outcome, estimating a 90% improvement of where I was just a few months before.  There is still some blockage, but because it was so close to my vocal cords, they couldn’t get it all.  He said that because I healed so well, I don’t have to go back to see him again, unless I have problems, then he would fit me right in.

I am forever grateful to Dr. Grillo for making me better, all of the staff at the MGH and especially to Ray.  He was a saint throughout the entire ordeal.  Now, over six months later, my voice is pretty much normal and one scar has faded, the other is still ridged and pink.  I don’t care.  I can live life the way an otherwise healthy human being is supposed to.

The most important lesson that I learned throughout this ordeal was to don't worry about the small stuff... It's the big stuff that should be a concern.  Peace to all of you.

(Authors note: I decided to put my story on the net hoping that it might help someone in a situation very similar to myself.  If you read this and have any questions or comments, please email me, I would be happy to talk with you.)

On July 23, 2002 I started an email list for Tracheal Stenosis sufferers at yahoogroups. You can become a member by going to Yahoo! Groups : tracheal_stenosis . A BLOG was also started.


last updated 7.23.02