Sunday, October 5, 2008


This might be boring,but it's part of my life...After the bowel obstruction surgeries before my wedding came a surgery to remove severe endometriosis,a mastoidectomy (major surgery for an ear infection),more tubes in the ears,then a sinus surgery with a new ENT (ear,nose,throat) doctor to correct a deviated septum and drill some holes somewhere in my sinuses for more drainage.Not fun!Then the lobectomy...removing a good part of my left lower lung.The thinking there was that if they removed the worst of the bronchiectasis,it would "cure" my lung problems.I got pneumonia after surgery...It was a long recovery from that one.A few years later,myOB/GYN found enlarged ovaries,so I needed another surgery for possible ovarian cancer...turned out to be endometriosis again.I had been referred to a specialist in Akron for this.I told him about my lung problems and that I get pneumonia whenever I have general anesthetic,so they did breathing treatments before and after surgery.This time, my lung collapsed.He came in and said,boy you weren't kidding about your lungs and sent in the pulmo team.In the late 90's I had to have a foot surgery done and I requested the "twilight"sedation for that.That worked better...Next was another sinus surgery in 2001.I had switched ENT doctors because I hadn't liked the other one at all,bad bedside manner.So this is my 3rd ENT.He mentioned that I might have something called Kartagener's syndrome,but he did research on it and said no,probably not,because my organs would be reversed if I had it.It kind of made sense to me though,because with this disease,the cilia hairs in the sinuses and lungs don't work right,so you have excessive mucus build up and sinus problems.When he did the sinus surgery,he used the twilight sedation at my insistence.He had never done that with a sinus surgery before,but he agreed to it,with the condition that if I needed to be put "under" at any time during the surgery,he would do that.But I tolerated the lighter sedation OK.I also started going to an allergist/pulmonologist about this time,because I thought maybe I should be tested for allergies again.Negative on the allergies,but he did find that I had acid reflux.He put me on Prevacid,which helped a lot,I could eat again!He also did bloodwork and found my IgG levels to be low,so he thought my immune system was deficient,so I started getting IV gammaglobulin treatments once a month at Aultman hospital.A CT scan showed more bronchiectasis had developed on the right side of my lungs.Now I know I have bronchiectasis,chronic sinusitis,acid reflux and my immune system doesn't work properly.So I'm thinking,OK,I'm just a very weird person!Why am I like this??I didn't know anybody else like me.I was on antibiotics several times a year for flare ups,coughing,not a lot of energy,feeling yucky a lot of the time,but trying to lead a normal life like everyone else...Just so this doesn't sound too depressing,keep in mind that this was over a span of years and I DID have times where I felt good too.Next up,the rest of the story...

1 comment:

Anonymous said...

Good to see you this morning at the sewing. Maybe we should be regulars. We'd probably eventually get pretty good!! Ha!
I'm glad to know your story more specifically. You've been through a lot! You're a strong lady!
Hope you had fun at Tiffany's tonight. Talk to you soon.