Connect
← Return to Does anyone have abscessus?
Discussion
Comment receiving replies
Karen, I’m so sorry to hear you have a similar situation. I don’t believe anyone I know understands the seriousness of this. I have had 2 midline iv’s and a pick line doing infusions twice a day and that was for pseudomonas! I just can’t bear the thought of having another PICC line and for 3 months to a year. My nurse said I’ll end up with a port because the PICC line won’t last. I have very fragile, thin skin and not much subcutaneous fat, I haven’t had a line last for two weeks! I’m all for putting it in God’s hands. The meds I have had caused me to lose 15 lbs and now I’m fighting to maintain. I actually weigh ten lbs less than what my drivers license says! That’s a first because I always tell them my ideal weight! Have to laugh at something.
I tell my friends I’m doing witch doctor, voodoo medicine. I’m really doing essential oils that I’ve read medical studies on. Can’t hurt. I do breathing exercises also. Actual exercising isn’t happening because of my back fractures, but I try.
I’m hoping for no bad news with my CT and then finding doctor to help me with a nebulizer and saline. I will do what you are doing and watch, wait, pray!
Best wishes and prayers to you too!
Diane
Replies to "Karen, I’m so sorry to hear you have a similar situation. I don’t believe anyone I..."
Connect
Have you considered going to NJH (National Jewish Health) in Denver. They are the absolute BEST for evaluation and treatment. I go every 6 months and I had MAC and was on Azithromycin, Ethambutol, Rifampin, Amikacin, 7% Sodium Chloride and Levalbuterol. After 13 months testing Negative I developed a new cavity and through a Bronchoscopy I was diagnosed with Aspergillus and MAC Ascbessuss. I was so upset because I do every precaution available and it still came back. I am going to start voriconazole for 6 months and my local Pulmonologist along with Doctor at NJH are deciding what to do with the Ascbessuss as far as treatment. It sounds as if you have been so much and I can feel your pain. This disease is like a roller coaster and you never know what is around the corner. I try to stay positive and know we are in this together and always there for each other to share our own experiences.