Tuesday, March 30, 2010

breathing update #2

    So, the botox started to kick in Saturday night and by Sunday morning it had fully kicked in.  I can breath quite a bit better.  Before, I could only walk at a snail's pace without being in danger of passing out.  Now, I can walk at a normal pace without any problems and do other light acitivities.  I don't think I could go workout or anything that strenuous.  My vocal chords are still closing together if I breathe too deeply too quickly, but not the rest of the time.  I can finally get a deep breathe so long as I do it slowly.
   The downsides:  I can barely even whisper, and if I try to talk too much, I can't even do that.  I had to buy a wireless keyboard for school so I can type what I need to say to the kids onto the smart board.  I can't cough.  When I try, I sound like I've been smoking all my life and I can't quite.  I can hardly drink anything without choking, and therefore going into a coughing fit.
   I'm hoping that these drawbacks will subside a little, but that I will still be able to breathe ok, but we'll just have to wait and see.

Saturday, March 27, 2010

breathing update

I went to see a new ENT yesterday and figured I'd give everyone an update on where we are.  First, I figure I'll give a recap for those of you who may not know everything that's been going on.  The recap is in italics, so you can skip that part if you want to.
    7 weeks ago, I noticed that I was having trouble getting a deep breathe.  This came on very suddenly; one day I was fine, and the next I couldn't breathe.  I went to the doctor that day.  They did a chest x-ray and didn't see anything, but decided to go ahead and treat me for pneumonia.  Two days later, there had been no change and I went back.  They put me on more powerful medicines and an inhaler and told me to call back in two days if there was no change.  Two days later, there was still no change and so my doctor scheduled me to get a cat scan of my chest.  That showed nothing either, so she then referred me to a pulmonologist.  He did several test in his office and decided that I probably had asthma along with some spasms in my bronchials.  I really didn't feel that this was right, but went ahead and tried the two inhalers he wanted me on for the next week.  They did nothing either.  My inability to breathe deeply (even walking at a normal pace is too much exertion) is constant throughout the day.  The inhalers made absolutely no difference.  I went back to the pulmonologist after a week.  The first time, I had felt like he had really not listened to what I had to say as much as he should have.  Also, a noise had developed when I would try to breathe deeply and I felt that he had kind of brushed that aside and not really paid attention.  But, the second time he really listened and said I needed to go see and ENT.  So, a week later, I went to get a scope done.  Thankfully, the ENT was able to see right away what the problem was.  Every time I breathe deeply or quickly, my vocal chords are shutting together and almost completely blocking off my air way.  Because this condition is so rare (the ENT has only seen it once before), he wanted to refer me on to a different ENT with more experience.  Due to a lot of failure to communicate, that ended up taking three weeks.
    So, yesterday morning was my appointment with the new ENT. He did another scope so he could see for himself exactly what was happening.  He was actually really surprised that I'm not having muscle spasms anywhere else (I guess most people that have this do).  After the scope, he told me I basically have three choices: 1. just learn to live with it and possibly it might go away some day, 2. have botox injected into my vocal chords (which may or may not help) every three months unless/until it goes away on its own, or 3. have a tracheotemy (which alsos may or may not help and is obviously an extreme measure).  He then told me that today (yesterday now) was a botox day, so I could do it then or I could think about it and do it in a month (he only does it once a month).  Well, having already lived with this for almost two months, and having already read on the internet that botox was a possibility, there was no way I was going to wait another month to try it.  So, yesterday afternoon I went back and had the botox done.  He had speech pathology students in that day following everybody around.  You know you're unique in a bad way when the doctor comes in after you've been left alone with the students and, in a really excited voice says, "Did she tell you what's wrong with her? Huh?".  It's supposed to take around 48 hours before it works, if it's going to.  I'm supposed to call back next week to let him know if it's helping.  So far, there's been no real change.  My throat feels a little weird, but there has been no change in the breathing.  Also, a side effect is that I may not be able to talk any louder than a whisper.