My New Life

Dr. Lim is my pulmonologist at Rochester.  I am going to try and explain this the best I can, but it will not be NEAR as good as he did, he did an excellent job and it all made so much sense.  So, not seeing me the very first time on August 11, just by reading the reports pneumonia started all of this, a VERY bad pneumonia.  I had been sick for a couple weeks prior, but thought it was all just allergies.  Fast forward.  If you look at the picture I have attached the dark black circle is my trachea, if you look straight down you will see a whitish ring.  This is where the opening is supposed to be.  All the rest of that area is scar tissue FROM THE INTIBATION.  He said I am just one of the few VERY UNLUCKY people., he honestly said that about 10 times...how unlucky I am lol.   All of my auto immune tests came back negative.  He doesn't want to do the surgery that could be done because he thinks it may do more harm than good.  He w...

Well I have started my final test.  This is the test I have been dreading all week.  It is testing acid reflux.  The Dr is wondering if I have such bad acid reflux that it is creating all this scar tissue.  Even though I don't have symptoms, he is checking it.  So, this morning I went in and they put a catheter through my nose down into my stomach and I had to drink normal saline and do some breathing exercises so she could measure how far in to put the one I am wearing now.  It is NOT pleasant, it is very uncomfortable but I can get it out at 8:45 tomorrow morning and I can't wait!  Then I see the Dr at 3:45 tomorrow to find out all the results from these tests. 

Well I saw Dr. Lim in Rochester today.  He confirmed once again I am a very unusual case.  At first he was talking about the vocal cord dysfunction, he then brought up my images and showed us how narrow my trachea is.  It was simply amazing.  We had NO clue how compromised my airway is.  No wonder I have trouble breathing!  So I am here for the rest of the week for testing.  Literally, different testing every day.  But, this Dr is so nice.  Like my Dr. At home we didn't feel rushed, he made sure to ask us if we had any questions.  He said he will get to the bottom of this because that area should be much larger.  Today I had labs drawn and had to go to a class about how to wear an overnight oximeter, checking for sleep apnea.

Well today I tried working again for 4 hours....and it went awesome!  Nothing like last time!!!  I took it easy and had NO breathing problems like last time.  Let me tell you, I'm so excited it is all I can talk about!  Now, we are at Rochester for a follow up appointment early tomorrow morning.  So, please say a little prayer we get some answers :).  I will update after my apt:) 

Has anyone suffered hair loss due to trauma, meds or autoimmune disease?  Do you have any tips for me?  I used to have such thick hair and these pics are after the 5th time of taking it off my brush and my fingers....

Well, I am home and doing MUCH better!  I can breathe and I can talk and sound like myself!  This time I was in the hospital for about 8 days (that's as many days as I was on the vent the first time I was in the hospital).  This time I started in the Cumberland ER, was taken by ambulance to Sacred Heart in Eau Claire (in CCU then medical floor), then taken to St. Mary's Mayo Hospital in Rochester, MN by ambulance.  When I was in Sacred Heart, the Pulmonologist said I needed to go somewhere larger either UW-Madison, Rochester, or the U of M.  He said SOMETHING was wrong and they couldn't figure it out.  He had no one in clinic that day so he said he would be on the phone all day if he had to get me somewhere to figure out what was going on.  So, I said I wanted to go to Rochester, and he made it happen.  I rode in an ambulance with a driver, 2 paramedics and a Respiratory Therapist.  I was still on bipap, so when I got there I had to go to the...