Suzette’s Story

Suzette’s Story

Suzette (on the right)I live in Mesa Arizona. Growing up I have always enjoyed vacations that explored the canyon country of the southwest area. I enjoy hiking, walking and being outdoors. When I turned 41 everything changed. I had two children in elementary school at this time. I was teaching 3rd grade in a Mesa Public School. The school was one of two in Mesa that had a basement floor plan. It had been a rough year and I was looking forward to the traditional holiday break. I remember going into the classroom the morning of the final day before break. I wanted to get everything ready for the new spring semester. All I can say is I could not keep my eyes open and ended up checking out early. The holiday was ruined by a particularly bad illness. I coughed and wheezed. I went to the doctor several times and was given antibiotics and inhalers. The doctor ordered an x-ray of my chest. The results were negative for pneumonia.

As the illness passed I recovered, except for a nasty cough and the feeling I wasn’t getting enough air. The students kept asking me if I needed my inhaler or if they needed to get the nurse. I found myself struggling to read aloud, because I would be winded. During this time I was sent to a pulmonologist. The doctor wanted my lungs and heart checked. I went through the physical and EKG. I had to ride a bike and I was easily worn out. One of the doctors in the room stated he noticed I was struggling to get enough air in and recommended me to see an ENT. The first ENT sent me to get blood tests to rule out any auto-immune diseases, particularly Wegener’s Granulomatosis. The results came back as negative. She then prescribed Dexamethasone, a type of steroid, to help open the air way. Unfortunately for me and all my family members it was detrimental.  I didn’t sleep for weeks and would be up in the middle of the night organizing my spice cabinet in alphabetical order or cleaning the fish tank at 2:00 AM. At this time I had moved schools again and was now teaching first grade. You cannot physically be up for days at a time and teach first graders… It doesn’t work. When I was getting weaned off the Dexamethasone, my body literally broke down.  I had a lot of confusion. I slept for several days not knowing the time or place I needed to be and crashed my truck. The most troubling thing is that I didn’t even care…

By spring time I thought that I might do something different as a career… maybe it was the stress of teaching. I was offered a position as an office person in a high school. The ENT I was seeing, decided that if they couldn’t figure out what was causing the stenosis, then the best thing to do was nothing. I thought, “So this is what my life will be like?” Will I not be able to see my kids graduating from college? I was getting depressed and actually started applying for additional life insurance. My evenings were filled with tears and exhaustion.

I remember going to Zion National Park with the kids and husband that following summer. I had hiked all the trails as a child with my parents and I think Zion is the most wonderful vacation spot in the world and I have many memories. Myself, my twin sister and brother would race up to the Emerald Pools Trail, barely without a “huff or puff”. We hiked Inspiration Point and Gateway to the Narrows. One of my favorite hikes is Weeping Rock. It is not a very long trail, but has a steep incline. I then realized that this was seriously impacting my life. I took one look up the trail and told my husband and kids,” I will wait here”. I did manage to hike up to the Upper Emerald Pools Trail. I remember a couple stopped and asked me if we needed them to go and get help. The woman explained to my husband I was seriously having breathing issues and to take it easy. I was ready to pass out on this one. Not really sure if I was in trouble or not, but I am very stubborn and wanted to be strong in front of the kids, I didn’t want to admit that I couldn’t do these activities anymore…

I finally gave up feeling sorry for myself and went in search of a new doctor. I finally found Dr. Raines in Phoenix that was willing to open up the trachea with a balloon dilation procedure. We continued with this treatment for five or six times. The nurses began to recognize me at the hospital and would ask “Are you back again?”

The last time I went in was October 30th 2012. Dr. Raines performed a balloon dilation procedure and used a laser, hoping it would maintain the airway. I was determined this was going to work and actually went into denial, until one day at work, my co-worker said, “It sounds like you are having trouble breathing again.” I quickly responded that I thought it was allergies… but had been tested and do not have any known allergies. As weeks went on, I had to admit it was happening again. My breathing was labored. During this time, I had scoured the internet trying to seeking answers. I was aware of the surgery for tracheal resection, but realized that most of the surgeries took place in Boston.   Hmmmm… I have never even been to Boston.

I thought, well I have to have the balloon dilation done again. The last time  Dr. Raines said I had waited too long and got me in within the week. Between deductibles and the insurance it was getting too expensive to continue doing this procedure time after time and was worried that my health was in jeopardy. I decided to contact Dr. Gambino that was my son’s ENT and placed tubes in his ears, when he was younger. I needed another opinion, because I would not continue to do to get balloon dilations, It simply wasn’t working for me. I found out many people do go and get dilations many, many times without problems…

The morning of my appointment with Dr. Gambino I got up early and walked outside. The air was cool and something told me today would be different. I took in as much of the air as I could at the time and went in to get ready for my appointment.

I arrived at the office early and finally my name was called. Dr. Gambino sat down and we did a quick consultation. He explained that he doesn’t do balloon dilations and suggested I go back to Dr. Raines. He said I should go in sooner than later, because he could hear my struggle to get air, even at resting. I have been to so many doctors and just wanted someone to help me. I nearly broke into tears and asked him… “Where do I go from here?” He must have felt the struggles I have been through, because he said he knew that Mayo Clinic did do this type of thing and even contacted them for me. After the appointment I was driving into work and got a call from Mayo. They wanted me up at the Phoenix location by 10:30.  So I called work and told them I needed the rest of the day off.  There I met Dr. Lott, which is doing a study on idiopathic Tracheal Stenosis. They did a scope and then asked me if I would want a balloon dilation done or tracheal resection. He told me to think about it and call them when I made a decision. In the meantime they set up a pH monitoring test at the Scottsdale location. I made my decision that I was going through with the tracheal resection. I had been so impressed with the staff at Mayo, that I knew I was in good hands. I was looking forward to the surgery. I only got anxious a few days before I was to go in for the surgery.

Thursday morning had finally arrived it was the day of surgery. I had to be at the Mayo clinic at 6:30 in the morning and there was one surgery before mine. I was finally taken back at 11:00 or so. I met everyone that was going to be in the room during the procedure… It was going to have to be a large room, for a small army. The last thing I remembered was the anesthesiologist coming in and injecting medication in my IV, stating it was something that was going to help me relax. I know I shouldn’t have fallen for that one because that was what the last thing the anesthesiologist told me before, I was out.   The next thing I knew was I woke up that evening. I saw my husband and said his name, before everything went dark again. At least they knew my vocal chords were still operational.

Later I found out that Dr. Lott had to remove more of the trachea than he originally thought. Apparently, there was more scaring in the trachea than what they could see with the scope. He ended up removing 5-6 cm. The surgery itself took much longer than anticipated (5-6 hours). My twin sister offered to give me half her trachea, but I said she should keep it.

My parents stayed at the Marriott next to Mayo, so they could give me emotional support. I think the most difficult part of the whole surgery was trying to keep me confined in a hospital room. Mayo was wonderful. They believe in keeping the pain controlled…  They really did an excellent job taking care of me. I was amazed that you could find, so many compassionate, happy people in one place, especially in Arizona. The nurses and support staff were amazing and I am delighted that I was at Mayo. I couldn’t imagine going somewhere else to have this procedure done.

I tried to be a good patient and not be too needy. One nurse told me that he could tell that I almost seemed defeated the first two days. However by the third day I was asking when I could go home. They told me when I was up moving around and eating, they would let me go home. I knew I was in for at least 5 days, but because of the extensive surgery it may have been longer. Although I was not really hungry, I forced myself to eat… it was difficult at first, because I had thought fear of injuring myself or maybe  something would come undone or tear. The worst part about eating was the soy chocolate pudding. Getting up and walking was definitely not a problem. I did laps around the nurse’s station. The staff checked on me all the time and checked the incision site. I was healing nicely.  Dr. Lott or one of the team members came and checked on me daily. I was in the hospital for a total of 5 days and went home on day 6.

I have been recovering at home to the delight of my family and animals. It was difficult to remain strong in front of my children. They needed to continue with their daily activities. My poor dog slept outside the whole time I was gone, waiting at the gate for me to come home. I really missed not being home and was thankful I was making a quick recovery.

Today will mark the 2 week anniversary of the surgery. I am breathing well and everything is working. I have some swelling in the neck region which seems to regress every day. My voice is still weak and the dogs are quickly learning sign language. I feel very good, I am planning on starting to exercise again and maybe I will see if I could run a 5K by December (OK, maybe with some walking). I am looking forward to getting outdoors and hiking. Life is good and I hope I am finally fixed.

I wish that more people in the medical field knew about this condition. I am about as stubborn as they come and I don’t give up. For those that are considering the surgery, I would certainly recommend it. However, find the right Doctor and do your research. I am not sure why this happened to me, but that is about living life. I am sure there is a reason, but I just don’t know the reason yet.

September 2013

Suzette Prowett

Date: June 30th, 2014 | Categories: Patient's Experiences | By: | Comments: 5

5 Responses to Suzette’s Story

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    l.c.

    Hi Suzzette. i just read your post. can you tell me how are they going to keep the scar tissue from coming back after this kind of surgery vs the balloon? I am having breathing problems due to scar tissue and heard about Dr. Lott from boston. I cannot go to Mayo Clinic in AZ even though I too live in Mesa AZ because my insurance will not pay for it. Will you have to have that surgery again?

    Thank you for your story. I had 7dialations in 2011. Now its back. Did your doctor leave your baloon in?

    James Maguire

    Hi Suzette,

    My name is James and I live in Scottsdale. I have a chronic airway stenosis condition as a result of a negligent tracheostemy back in October of 2016.

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