Saw my pulmo today for a follow up to my infection in my trachea.....I still have bleeding and plugs and soreness and am short of breath.......soooooo the bottom line is she isn't sure why this is happening now (I've had the trach for almost 3 years) and if we remove it there isn't a guarantee that it will cure me although it's a good beat it will.....when she did the bronchoscope two weeks she didnt' see anything else. she told me today that my lungs look great (thank heavens) and that the spot was definately at the end of my tubing.
For now another 10 days of anti's, pred and she is putting me on a fugal med just in case. she said no colonies had shown up but we will do this as a precauction....(said it takes up to 6 weeks for them to grow in the culture taken)......as far as removing the TTO, it's up to me at this point. I see the doc's at National Jewish the end of March and my doc here is anxious to see if they have other suggestions. I will also call them Nat Jew and talk to my doc's nurse and tell her all that's been going on, they may want to do different test than what is already scheduled due to all of this ) I told MY pulmo that I will hang on until this course of antis is done and see how it all feels (unless I get too frustrated and yank it out for good!) if I do remove it all I do is take it out and not put it back in.(call the doc just to let them know)....then it's back to a cannula and that was almost as bad as far as infection and discomfort (in my nose, had sores that never healed) and my nostels are so small, only some gets through......lots to think about but I know me and it's my patience level that will decide this one.....how long can I "take" it. it's been a long time already and I'm pretty tired of gagging and bleeding and being so sob (short of breath) although I've been called the other too
so that's where we are and now wait and see if this second batch of meds help....I told her I felt the last anti I was on was helping, which is why we are trying again........
Post by Blossom/Jackie W. on Feb 26, 2010 7:45:10 GMT -5
Good Lord Zoom; has it been 3 years?? It doesn't seem that long at all.
Well; I'm not quite sure what to say. You were doing so well after the LVRS then you started running into this problem. It's gotta be absolutely frustrating for you. I remember you saying they put in a "shorter" tube but obviously that didn't do it. You know it's really too bad they can't get you into Ntl Jewish before the end of March.
I know it's hard to be patient right now but it's not a decision ( the removal of the TTO) that you have to make right away. Give the meds a chance to work. Sometimes it just takes more than one or even 2 rounds and even finding the "right anti" can make all the difference.
I'm really sorry you're having a rough/frustrating time right now. I'll say a prayer and we'll all keep our
Wendy, I'm so sorry that there's still a problem with the tubeing. Perhaps this round of anti's will help. I'm glad you're going to see the specialist's in March, with any luck they will have some simple answers for you. Hang in there. I'll say an extra prayer for you.
Wow! I am so so sorry to read that your problem is still continuing. I really hope this anti round helps clear things up. You must really be at your wits end and my thoughts are with you. Here's hoping the best for you.