Have Bronchiectasis, recently diagnosed with pseudomonas

@auntnanny Jan,
I am chilly all of the time too. It is 98 degrees outside, my thermostat by day
is set to 74-75 and I wear a super thick robe/jacket in my house most of the
time. Same here, crawl in bed, I am cold, hours later, burning up! I am so used
to it that it doesn't even annoy me anymore. I just roll with it. I can do that
because I am not soaking my pajamas two to three times a night like some of us
on this forum. That happens maybe once every several weeks. But hot, yes, every
night.
 

Dear Katherine, This is Carolyn; I am a newly diagnosed woman you have helped tremendously in the last six weeks since I was diagnosed with MAC. I have read & learned so much from you & from other comments/tips on this forum. I went to Rochester Mayo 10 days ago & found an excellent primary ID doctor I formed a good bond with..have been very busy since I got home doing baseline testing, as you recommend. I will start on the Big Three in the next week or two--scared to death, as you so well remember and appreciate. I also understand I am beginning (what I hope to be) a long journey. Have just begun using an inhalant, a Nebulizor & Aerobika to help loosen mucous..lots to learn still!
But thanks to YOU & the other good people on this forum, I feel SO much less alone and for that I am very grateful.
I hope you read this and know that another person out there sends her love & support and best wishes to you, not to mention an abundant appreciation for what you have done with this forum. Namaste. (As my yoga teacher translates this: The Light in me recognizes the Light in you.)

@katemn - Hello! In searching for help for my Husband who has had pseudomonas on and off since 2009, bronchiectasis for years and MAC since 9/2017. He is 75 and also has COPD and Pulmonary Fibrosis. I came across this very informative site! I can’t wait to read more about everyone’s stories.
My husband has had three rounds of IV antibiotics through a PICC line since beginning of July with no help. Oral antibiotics do not work anymore. One round of Ceftazadime and two rounds of Cepifime(?). He just got approved for the Tobi inhalation solution to start today.
My first question is 1) has anyone experienced severe nausea and/or chronic constipation?
My second question is, obviously (2) has anyone had the same problem getting a control on the pseudomonas? We have a wonderful team of our Infectious Disease Dr and our Pulmonary Dr at Loma Linda Hospital. History of also seeing wonderful pulmonary dr at UCLA.
Thank you for reading my husband’s illness and any responses will be welcome!

@wifelaurie Good morning Laurie and welcome to our group. I think it is wonderful of you to join 'Connect' on your husband's behalf. My name is Terri, and I now mentor this group. Your husband seems to have more than his fair share of serious lung issues. I feel for him, and you also. I know it is hard on the caregivers too. To try to answer your questions; some meds can cause nausea and constipation. If you can isolate which drug may be causing it, then deal with it. If one causes nausea, test to see if taking it differently like on an empty stomach or with food helps. Also, try to get plenty of fluids in him. That will help not only with constipation, but it will thin the mucous in his lungs and make it easier to cough up phlegm. Perhaps his doctor can recommend a remedy. As for the pseudomonas, I had it in 2016 and was treated with inhaled tobramycin. It worked wonders for me. The cough I had for years, was gone in 30 days. I am on monthly antibiotics for life including the tobramycin every other month. Fortunately, I tolerate them well. I believe that your husband may need to be on maintenance antibiotics indefinitely also as he will be forever suseptible to getting infections due to the numerous lung issues. Pseudomonas can be tenacious. It can be tough to get rid of, and it can return, as you know. (That is why I am onTobramycin every other month) It is good stuff. I hope it works as well for your husband as it did for me. Is his Pulmonary Fibrosis very advanced?

Pseudomonas is quite common with Brochiectisis patients. The tobomyicyn was very expensive, but effective for me. Well worth it. Hope it helps.

@windwalker Hi Terri, do you mind sharing what meds you are taking for your MAC? I was diagnosed MAC/MAI and pseodonomas aeruginosa. I dont feel like the pseudo went away w just the Cipro. Another sputum was just done Monday. Waiting for results. My doc said he likes to save Tobyrmcin as a last resort. 😖

I had a dose of Cipro and it came back pretty quickly. Then I had Cipro (2 weeks) and Tobyrmcin for 1 month.

@elainet Welcome Elaine! So true about the toby being expensive. There is a foundation that will pick up what insurance doesn't pay for. (If you qualify for help, takes 5 mins on the phone) It is called The Healthwell Foundation. I will get back to you with the link for them. This info will be good for others that use tobramycin as well.

@elainet Not being on an antibiotic long enough is a common mistake that some doctors make. Been there, done that myself. People with bronchiectasis need to be on maintenance antibiotics if they are in the phase of the disease where mac and pseudomonas infections are starting. When I was diagnosed with mac in 2005, I was put on a ten day run of cipro, that's it. That was a temporary fix. Then, they put me on zythromycin for ten days. I was less sick, but still sick. I got sicker and sicker until I went to the Mayo Clinic finally in 2013. I was put on light, but steady monthly antibiotics for three years. It got rid of the mac. Then, I got pseudomonas in 2016, was put on tobramycin every other month, cipro on the other months. I am still on that regimen and doing great. The bottom line is, you may need to be on lifelong antibiotics if your bronchiectasis is bad enough. Many people on this forum are catching theirs early and slowing the progression of the disease. Have you read over some of our older posts on the discussion board? You can scroll down it and choose topics to read about. There is good info there.

@margiebanks Hi Margie. I am on inhaled tobramycin for 30 days every other month (to keep pseudomonas away) and cipro for ten days on the other months (to keep mac away). My dr isn't treating any infections in me right now. I am infection free. Rather, he is treating the bronchiectasis. He knows bronchiecstaic lungs are prone to various infections so we are heading them off before they come. It is called 'prophylaxis', meaning 'preventative measure'. I also do the inhaled saline treatments twice a day. By alternating the monthly meds, it lessons the chance of the mac building a resistance to it. My doctor is a Mayo Clinic pulmonolgist; I trust him entirely as Mayo has done extensive research on this. Everyone's body is different and so is our disease levels. What works for me, may not work for everyone else. I wanted you to know that there are other treatment options besides going on the Big 3. Not everyone can tolerate the Big 3. I hope this helps.