My New Life

Yesterday I saw the pulmonologist.  And he has added a diagnosis of bronchiectasis.  He also added 2 more nebs to my routine (that makes 5 nebs) some 4 times daily, some 3 times daily and some 2 times daily.  He also is ordering me a vest that I will wear 3 times a day that will shake me to get the secretions loose in my lungs.  So last night before going to sleep, I went to go stand up and of course my back pinches and locks up and I can't move my left leg.  Ugh.  Someday this all has to get better but today, I'm rotating ice and heat between my lower back and chest  (hurts from coughing so much) and resting.  Rest and drink water!!!! 

Well, to say I'm ready for a new year is an understatement.  I am so thankful to go into this year being able to breathe.  Although,  learning to live with a trach is NOT the easiest.  I can't talk quite yet, which is really hard.  Christmas day we had a scare.  I started coughing, a lot.  There was some bright red blood (maybe a little more than a little) that was coming out of my trach and I couldn't stop coughing and catch my breath.  Mom called 911 and thank goodness for the Cumberland Ambulance and first responders that came out.  I was greeted at the Cumberland ER with many people waiting to take care of me.  It was decided that with me having a trach and the bleeding I had to go back to sacred heart.  So, off I was on an ambulance again, the last thing I wanted on Christmas Day.  At sacred heart I was diagnosed with pneumonia.  So back on steroids and antibiotics I went.  But, the good news was there wasn't...

Ok, I'll admit it.  I'm scared shitless.  I know this is what NEEDS to be done if I have any chance at getting better.  And, honestly, Tuesday can't come fast enough.  I did something today I never ever should have done, and I knew it too.  I googled Tracheostomy and watched a video of the surgery being done.  I've seen a video of it several times in school, so I know what it is like but when it is me in the situation it is completely different.  I am only 37 years old and need to have an artificial airway.  I am gladly welcoming the new year 2020.  I am determined it will be MY year!! 

This used to be my favorite time of year.  Key word USED.  In case people didn't know, I HATE being like this.  I would LOVE to be able to go to work, I would LOVE to not have to wear a mask, and I would LOVE to be able to skate with my boys at open skate.  Instead I worry about my kids and family being embarrassed to be seen with me because I have the mask, I feel like a burden, I have to rely on family to help with everything.  I hear people talk when they see me.  I am made to feel dumb when I go get labs drawn, seriously adults being bullies is terrible.  I'm not trying to get ANY sympathy, I just need to vent and want people to know that just because some people "look" different doesn't mean they chose to be like this.  I'm 37 years old with two kids and have to think about disability.  I have always been what I consider to be a hard worker and this truly destroys any pride I had.  Not much is new with my health, not getting any wor...

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.