Lifetime Of Bronchiectasis

I've always had bronchiectasis, but 3 years ago i was diagnosed with pseudomonas pneumonia and have been battling this infection since then. I was told that i will need neb treatments then iv at home, then surgery by one pulmonologist then another told me if the new maintenance drug stablizes me i may be able to get off tobi, which i started 7 months ago. this new maintenance drug seems to be doing its job, praise God!
emoflo2 emoflo2
46-50, F
4 Responses Dec 5, 2012

I had pseudomonas pneumonia and was able to kick it with drugs But my Dr is always on the lookout to make it sure it doesn't come back when I get pneumonia.

Is Tobi your new maintenance Drug or something else?

no, it's Asmanex Twisthaler 110 mcg used once nightly...it really made me stable, and even "better" as my pulmonologist put it!

It was very interesting to read your story on the web site.
I have had bronchiactasis since 10yrs of age. Now 70! I had two lobectomies at age 12. I lived in a dry
climate until age 34 then returned to a damp one and problems started. It was not so bad until about 8 yrs ago and had to go on IV antibiotics, nebulisers, steroids each winter. now my problem is I have
Asthma and I am looking for a remedy to stop coughing at night and get some sleep. Apart from sleeping sitting up, do you know of any other way I can sleep without coughing all night?

Could any part of your problem be due to reflux? Try not eating anything two hours before bedtime. You might try going to the drugstore and buying a NeilMed Sinus Rinse Kit and using that before bedtime...just in case any nasal dripping contributes to the cough. Also...this is very important: cough up as much mucous as you can before you go to bed to clear your lungs. Someone told me to try blowing up a balloon. (Personally, I don't need to do that. I just inhale deeply and exhale forcefully until I force up the mucous...literally hacking it up. It is not at all "romantic" or "feminine" to hear me. However, it does the trick to clear my lungs of as much mucous as possible before I sleep. I hope that this helps you!!!

You must drink lots and lots of water and perhaps take Mucenix, (over the counter)
I had this same problem until I took these steps.

I was given Ipratopium Bromide 2.5 ml to use every 4 hrs, as needed, and it does the trick! hope this helps!

the Ipratopium is used by nebulizer and is supposed to deal directly with the elasticity of the areola in the lungs. whatever it does, it helps with my night cough.

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What is the maintenance drug that seems to be helping you??? Thank you! I would love to know the name of this!!!

Tobi was awful for me. I inhaled it two times a day for about 9 months. I decided to go off Tobi because when I took it my lungs became so seemingly filled with fluid that I coughed more than ever, instead of less!!!

Hello! Yes, it seems to be doing the trick, thank you Lord! It's called Asmanex Twisthaler 110 mcg. Mine were that way too, it's the side effect when your sick, at least that happened to me...but as I improved with this new inhaler the wheezing subsided (2 mos now). I'm seeing the Pulmonologist on Friday and she may even take me off Tobi...I'll keep you posted. I'm afraid to get off Tobi, but it's a risk I need to take. During my bad wheezing days I also was prescribed other neb meds for one month; one like rescue inhaler, the other for temp. treatment (like a decongestant) and the last one like a maintenance drug. In that order here's their names: Albuterol Sulfate 3 ml, Ipratopium Bromide 2.5 ml, and Pulmicort Respules (budesonide) 2 ml. I believe these helped with fluid reduction because I was prescribed these during my worst days (this past Aug.). I pray you improve quickly. God bless!

Thanks so much for replying! Wishing you the best when you visit your Pulmonologist this Friday. Please keep me posted! Pam

Hello Pam; my visit went quick, I would say it went well, praise God! I was told that I still have the colonization, and am to continue same treatment, but am well enough (thanks to the maintenance drug, Asmanex Twisthaler) to go back into the workforce part-time, at least until April --- when I see her again. Looking for one is another story, due to finding one that works, and Div of Voc, Rehab will be helping me in that dept. My lungs have been hurting now though, due to the flu going around, but I don't crash like I used to, thank you Lord! I am pleased about that, but Baclofin (pain meds) don't seem to be doing the trick...do you have any recommendations? Thanks for "listening"! God bless!

Dear Emoflo2,
Best of luck in your job search. I am so sorry to hear that your lungs hurt. I don't have that problem, just discomfort whenever I have a lot of mucous and have to cough it upI

I have had my medical ups and downs in past years, but am feeling better right now. Previously, I went through many Pulmonologists before finding one who could really diagnose my problem as a lung infection with pseudomonas. None prior to Dr. Schiffman had ever done a bronchoscope test on me. After being diagnosed with the pseudomonas infection and being given Tobramycin, I was sent to an immunologist to help determine how I got this severe infection in my lungs. I was given numerous blood tests. I guess it was not determined if the bacteria caused the bronchiectasis or the bronchiectasis was a good host for the bacteria. I did not care for the immunologist I was sent to, so I emailed University of California at Irvine, Dr. Leman Yel, Head of Dept. of Immunology, for a second opinion. She spent over an hour with me. She determined that I have a problem producing antibodies. She also did a blood work-up on me. For the past two years, I have been on a regimen of plasma infusions every four weeks to boost my immune system. (This is a very expensive medicine called Privigen, and it has to be administered by a visiting nurse.) As I am now 65, medicare does cover the medicine, and my insurance pays for the nurse. I feel that I have been handed a lifeline. My cough is not gone (due to the bronchiectasis), but I am feeling much better. I hope that this information helps you.
Pam

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