I live in California and have Bronchiectasis and colonized Pseudomonas.. just finished 3 weeks of IV Meropennum and I also have a Port. Also immunocompromised and receiving Gamma Gobulin monthly again sub q.
Was dignosed 4 yrs ago and would really like to talk to anyone in the United States to see what kind of medical care they are receiving and make a friend too.
Thank you.
Hiya Lapis5, there are a few American members . Hopefully they'll be awake soon, see your post and reply. In the meantime, hello from sunny Gloucestershire, SW England 😎
Hi Lapis I’m from England too.There is a Facebook group which has many Americans on it .They often give information on what treatments they are given.All the best and hopefully you get connected with people.
Hi. I lived in California my entire life till seven years ago and now live in Oregon. I have Bronchiectasis. I have Kaiser insurance so I see a pulmonologist with them. I also go to an MD Naturopath who has helped me too. I still have relatives in CA so go there to visit. I’ve learned so much from this site. ❤️
Hi Lapis,
I’m from California and was diagnosed with Bronchiectasis and pseudomonas in 2016. I’ve never been given IV or inhaled antibiotics, as Cipro or Levaquin knock things down, if I get an exacerbation. I’ve been with Kaiser until this year, when I changed insurance to a PPO. I find that I’m getting better care now. I’ve gained a great deal of information from this forum. Postural drainage had never been suggested by my doctor, but I read about it here and that has really made a difference in my lung clearance.
Hope you’re feeling better, after your IV treatment.
Is your Pseudomonas colonized or not? I live in Sacramento, CA formerly from LA, Santa Monica, Long Beach, Where do you live? Have you been to Cedar's for an evaluation ?
Yes, my pseudomonas is colonized. My doctors never attempted to eradicate it. I live in Encinitas, but also have a vacation home in Oregon. I see doctors at UCSD. Pulmonologist is far superior to Kaiser. I thought about going to Cedars, but the cost was too much. I’ve been lucky and don’t have exacerbations frequently.
hi, I live in TX. Diagnosed with emphysema over eight years ago. Maintaining in the moderate range. I exercise most days using a Cubii (elliptical type machine), hand machine and rowing machine. Not able to use the rower at the moment as I have pulled the tendons in my right hand. The key to everything is not to be a couch potato 🐞
I live in Iowa and have had lung issues for over 30 years. I'm 73 yrs old. I was finally diagnosed with Bronchiectasis about 15 yrs ago.
I use a nebulizer with albuterol and have a percussion vest to help loosen the mucus. My specialist also has me on a low dosage long term antibiotic, Azithromycin.
I also was diagnosed with an immune deficiency, so I go to the local outpatient infusion place every 4 weeks for treatment.
Before I retired and moved from Indiana to Iowa 7 yrs ago, I couldn't go more than 2 or 3 months without having to go to the ER, or hospital stay or have a bronchoscopy (5 in one year).
There are things that can be looked at in your daily life to help improve your health: less stress, environment (hidden mold and other allergens), eat healthy, exercise (even if it's just walking around), etc.
Beth
Hi there, I'm in the UK and with one of the top heart and lung hospitals here (the top one in my opinion) I also have mostly Pseudomonas, often colonised, sometimes Aspergillus, once only Staph...Due to sensitive tummy re antibiotics, if I suspect an infection, I send in a sample to them or ask my GP to send sample to local hospital to get tested.
Then once they know what they're dealing with they decide what I'm given
For Pseudomonas it's usually a combination of Meropenem and Ceftazidime which I inject at home after having a line fitted, they work very well.
When I first found I had Pseudomonas I worried about it being quite a nasty bug to get rid of, but I don't now that I've had it many many times and it's been treated effectively .... it even went away for a while
Hello, Lapis, nice to meet you. As you’ve seen, there are some US members here & others will probably be along too.
I find it interesting how differently bronch is treated in your country, compared with Europe. Here, there’s a huge emphasis on daily lung clearance to repel infection, we don’t use percussion vests, and the first line nebulised antibiotic to suppress pseudomonas is colomycin (although not always, some people can’t tolerate it.)
I wonder if this is because of the extreme monetisation of healthcare in the US. Lung clearance costs nothing, vests are expensive, and colomycin is cheap!
And the results are in............
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