Where Shall I Begin...

As I prepare for my tracheal resection surgery my daughter has encouraged me to start a blog.  She said that since we have been reading other blogs online and they have helped me to understand my illness that maybe I could also help someone in the same way.  So in hopes that this will help I will try to tell my story.  She also thought it would be a good way to keep family and friends informed as we go forward. 

I guess I should first tell you about myself then explain the illness.  I'm a 50 year old woman who has struggled to breathe for many years.  I can't say for sure what year I first noticed this but I can remember a few times when it really effected me.  I just kept thinking I was out of shape and making excuses about my heavy breathing, constant coughing and clearing of my throat.  Thinking back I know I really struggled when I went as a school chaperon for my daughter's Spanish class to Mexico in 2004.  We were doing a home stay, and the home I was at was up on the side of a huge hill.  I had to go up many sets of steps to get to the home I was assigned to.  After one try I knew I couldn't do it.  I had to pay a taxi to take me every time that whole week.

Over the years as I would complain about not being able to breathe I would see the physician's assistant, and I was always diagnosed with a sinus infection.  I was so trusting that I didn't even think about questioning the diagnosis.  At one point I was sent for a sinus x-ray that was clear.  I would always be given a prescription for an antibiotic and prednisone. (The prednisone would actually be a temporary help with the real issue, therefore I'd feel better for awhile)

After I complained enough they tested me for asthma (which most people with this illness are misdiagnosed with at first) but they decided that wasn't it.  I'm not sure how many years this went on but finally in March of 2012 I couldn't stand it any longer.  Being short of breath was one thing, but it had gotten to a point where I couldn't function in day to day tasks.  My breathing had become very noisy (stridor) and the coughing was worse.  I couldn't go up a set of steps without being totally out of breath.  That's always been the worst for me - stairs!  I called and insisted they send me to a specialist.  First off I saw someone locally that checked me for allergies.  Both my arms were stuck with all those tiny pins and the red bumps never got any larger - no allergies....so then he listened to my breathing and said it was coming from my voice box area and thought it was vocal cord dysfunction.  Never having heard of this I quickly googled it and found out what I could about this illness.  

Next they sent me to an ENT  and silly me I went all alone.  I thought it was this vocal cord thing and wasn't worried. That was a big mistake.  He didn't explain what he was doing, and when he hurt me  I made a noise. He told me very sternly to SIT STILL. That happened at least twice. The procedure was a flexible laryngoscopy.  After he finished he very quickly said there will be no simple fix, you need to see a chest surgeon.  Wow, did he just say what I thought he said?  By the time I could even comprehend what he said I was in the hall making an appointment to see the next doctor.

That brought me to Barnes Jewish Hospital in St. Louis where I saw a very kind and professional surgeon. Of course first I had to have some more x-rays, ct scans, etc.  This new doctor took his time to explain how my trachea was narrowed and advised I would probably need a surgery to fix this.  He wanted to schedule it with another surgeon there.  Well, instead of them calling to tell me when my surgery would be they made me an appointment with this second surgeon because he wanted to see me first.  He was is as nice as the first guy there.  He explained that I had other options.  He said the area of my trachea that is narrowed was a small section, and said we could try a laser/balloon dilation procedure.  They put you to sleep and go down your throat.  The laser is used to cut into the swollen area and then stretched with the balloon.  He said sometimes this helps, and sometimes it needs to be done a few times.  We agreed that this is what I should do.  So on July 9th, 2012 I went to Barnes for this surgery.  

Let me say that at this point I couldn't go up a flight of stairs without stopping on each and every step to catch my breath.  I couldn't carry out the trash, I couldn't blow dry my hair, I couldn't carry in my groceries.  Besides all this when you can't breathe you don't have much energy.
I was really starting to know my limitations, but at times I 'd forget.  Once someone knocked on the door, and I was alone in my nightgown so I ran to get my robe before going to the door....that had me gasping for air for several minutes.  One day I was helping my husband unload the racecar and move it to the garage.  I made sure no cars were in the area then ran to the garage to make sure he knew how close to pull up. I almost collapsed because I could run but once I stopped at the garage I couldn't catch my breath.  It was scary and after that I pretty much remained sitting in my recliner whenever I could.

On July 9th I was a little nervous for this surgical procedure but knew I had to do something.  Not being able to breathe is no fun at all.   After the surgery I was able to take a deep breath.  Something that most people take for granted.  It was the most awesome feeling.  I just kept taking deep breaths. When I got home I raced my son across the yard.  The difference was amazing.  I was so very happy and I just kept telling my family "watch this" and then I'd take a deep breath.

I enjoyed clear breathing for several months.  

To be continued....