Friday, January 24, 2014


November 11, 2013. If you follow my Blog or Facebook you know that I have been battling a Lung problem that has me coughing so hard I have torn several intercostals and causing severe shortness of breath and has me completely debilitated. I cannot even walk unaided. Taking a shower requires a shower chair and lots of breaks to catch my breath. Drying my hair - well that's like trying to run a marathon at this point.

November 11, 2013 - Yes, I can tell you the exact date this began! Literally overnight. I was dealing with my IC issues and nothing else one day and I woke up the next morning wheezing and coughing. It got progressively worse and, as many know, I spent 8 days in the hospital in December. 

November 13, 2013! That means this has been going on now for over 10 weeks! There is no way to describe the agony I am in. And needless to say, my IC doesn't think much of this either. 

I have been under the care of a wonderful Pulmonologist. He suggested I consult with an Allergy/Immunology expert so I did that two weeks ago. They took enough blood to fill a blood bank. But I was optimistic. The doctor thought she was sure what the blood work would tell us. They tested me for everything under the sun. So the next step was come back in two weeks and review the results of the blood test.

I saw the Pulmonologist again this past Tuesday and that was quite disheartening. I asked the Allergist to send all my lab work to the Pulmonologist (hoping for an early clue) and they did. So he looked at it all and all the test results were negative. He was actually calling the Allergist as I was leaving the office. He was also going to call a friend of his at Mayo to consult and see if I should go there or if he had anything to offer. I had yet another Spirometry test in his office on Tuesday and I am actually WORSE than the last time I saw him. He is at his wits end and feels very bad for me. I am not responding to the treatments and that has him completely at a loss. He wants me to also see my Gastroenterologist as my GERD & Hiatal Hernia MIGHT be playing a role. I have an appointment to see that doctor today.

So my appointment yesterday with the Allergy/Immunologist was very frustrating as it yielded ZERO answers. SOME of my immune system results showed I'm "weak" in a few areas and she would like to strengthen those areas. But none of the tests led us to a place that we could say "here is why/what you have".  She changed some of my meds, upped the dose on some others and changed my inhaler. The Allergy/Immuno doc thinks it may be time for a bronchoscopy which the Pulmo would do, but I asked the Pulmo on Tuesday about it and he really didn't want to do it at this point. You have to be under general anesthesia and the Pulmo said it could actually make my cough worse, so it's a double edge sword. I am very frustrated. The Allergist was going to call the Pulmo yesterday and consult again. I see her again on Feb. 4th. She told me "I'm not done with you; you are not discharged by any means". But I really have no answers still.
I have been rather absent from both Facebook and this Blog and this is why. I just don't have the energy to devote to my IC advocacy efforts and wanted to bring everyone up to date. I have received SO many wonderful messages wishing me well, sending prayers and asking after me, it truly means the world to me. Thank you all!

November 11, 2013 and counting. 8 Days in the hospital. 4 Doctor consultations with one more to go. It's still a mystery. 


  1. I think we have something way more mysterious than we think, because I have all the same issues YOU have. And trying not to void while coughing and throwing up, well, that's impossible. - Alisha

  2. Reading through your posts, I now realize we have four conditions in common now.
    BO, IC, GERD,and hiatal hernia.
    Do you by chance also have an impaired IGA (immune function)?
    There must be some connection.
    I have taken many antibiotics through the years for pneumonia and antibiotics for acne when I was a teenager. connection?