Bronchectasis And Chronic Pseudomonas

@renee53 Six years ago I was in your shoes. I had just finished the almost 2 years of the Big 3, with the last 6 months daily. Before that it was several rounds of treatment for pseudomonas. I cried because I couldn't even decorate my 4 foot Christmas tree.

Gradually over the next year I got 80% of my energy and 50% of my weight back. I continued to do things in 20 minute bites. 20 minutes of a chore, 20 minutes rest, 20 minutes enjoyable sedentary activity.
What helped me a lot was a high protein diet and daily walks - at first only 10 minutes, but eventually 1-2 hours a day. Fast wasn't the goal, slowly building endurance was. Also doing something I liked. (Don't look in the corners or at the wind at my house some things aren't important anymore)
The meds and infection took a big toll on your body and spirit. Hang in there and gently push onward. Let me know in a month how you are doing.

Thank you so much. All your words of wisdom are taken sseriously. I continue to exxcverisce. It’s difficult, but i push myself, I too, fought MAC and have been free of it for two years now. We all go through so much with this.,. Thank you again for your advice, i will take it! Sorry if there is lmisspeelliong. I have Macular degeneration and have lost a lot of vision. So i do wthe best i can.

I have been unable to knock the infection back with IV twice now. During treatment the Pseudo knocks back to very little and I feel so much better but that effect only lasts for one week after I stop the IV and my Pseudo builds back up to what it was before treatment. Did IV for 11 days and 14 days. Do you think doing 3 weeks made a difference and would you mind saying what IV antibiotic was used?

Irene. I can relate to your pseudo story. I can't do any oral antibiotics--allergic to them all now. I can no longer tolerate Tobramycin. I just finished 14 days IV Ceftazadime. Cough was gone before the end of the 14 days. Six days after PiCC line removed I'm coughing up some familiar sticky, yellow sputum. It's been seven years dealing with this and it is a struggle most days but I'm continuing to do what I can, when I can. Quality of life is my goal at this point. Having good support (my husband) makes a big difference. Blessing to all.

@fdixon63
Have they tried any other IV antibiotics in the past?

@irenea8 - I've never been prescribed an other IV antibiotics. I've wondered about that and will check with pulm on my next appt. Thanks.

Hello there I too have chronic psudonomas and mac lung disease I've been on Aztreonam and three days ago I had a picc line put in and doc has me on meropenem doesn't seem like im getting better I actually feel worse. This bacteria is so hard to treat and has become chronic. This is the fourth time this year I had infection and I am so discouraged. Feel like poo. How are you doing. What antibiotic are you taking. Do you know how you may have gotten the infection.

I was on a pic line for three weeks for psuedomonas. It contained Piperacliin. Now 6 weeks later and If eel so much better. There was another medicine inclined with the Piperscalin but I forget its name. Maybe this could work for you too~

@renee53
Thank you Renee. This is helpful. It was probably Piperacillin/tazobactam that you had. Does that ring a bell? And three weeks is a long time but may be more effective than 2 weeks. My Pulmo has mentioned wanting to give me that combination a couple of times. But when I read up on side effects I was afraid to. Did you have side effects in those three weeks? Did they ever try other IV antibiotics on you in the past?

@irenea8 I had no side effects from the pic line meds. And yes, that second drug does sound familiar. I was on Leo Quinn but got retinitis in both elbows. I went through a litney of antibiotics c. Now my only hope is the pic line as the other drugs were not smart enough to outsmart the psuedomonas. Three infections last year. Buy I am really excited braces my pulmonagist is starting me on a brand new drug for the bronchectasis which should indirectly help with the pusidomonas. The drug is called Brinsupri. You have to quality’s for the drug with a diagnosis of bronchectasis and two ore more infections a year. Sounds like you could blear that easily. Log this new drug is supposed to reduce your flare ups by about 60 percent. That is so promising. Pleases check into this. The drug has only been out since august of this year. Good luck