Bronchiectasis: New Diagnosis

Posted by navylady @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

@garry Yes, that is so true. As a child we ate a small amount of raw meat with an onion slice and a bit of oil used in a Syrian dish my dad made. We ate tons of fresh fruit, but my dad had sprayed the trees and bushes with DDT!! I shudder when I think of that now. Everyone in my family has passed due to cancer. I am trying to beat those odds. The MAC meds are not pleasant, but I am persevering- fingers crossed and lots of prayer. (irene5)

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@garry

I still say chest xrays do not show mac. Maybe it is the people reading the xray that don't know what they are looking for. I went almost 10 to 15 years not knowing what it was until a young intern sent me for broncoscope. They grew the sample and said I had mac. Maybe u do not have mac. Maybe phemonia. Please excuse the spelling. I have a stack of xrays an inch thick. When they found it I went on the big 3 for 6 months. It comes and goes and it always there waiting to make you feel bad again.
I had issues with the salt but have figured it out. It is not the salt but the other concockshuns that I have tried. I do lots of silly stuff trying to beat this.Not much I have not tried. I finally have the dr giving me antibiotics that I can use as needed. I may go 3 months feeling good and then I get run down and I am back on the drugs. My issue is they are getting less effective each time I do this. Hoping the salt 7% saline will be the answer. These people on this forum will help u they are the best. Your northern canadian friend Garry

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Garry you said, "I still say chest xrays do not show mac." How about a CT scan? Pulmo ordered one for me a year or so ago. Read it along with the radiologist. The report to me was that my Mac had "improved."

Liked by Dee

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@thumperguy

Garry you said, "I still say chest xrays do not show mac." How about a CT scan? Pulmo ordered one for me a year or so ago. Read it along with the radiologist. The report to me was that my Mac had "improved."

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@thumperguy Here is the explanation from my ID doc about the CT findings – the CT shows signs of the infection in the form of lesions, cavities and other damage. It also shows the extent and severity of the underlying bronchiectasis. The culture confirms the presence of a specific organism such as MAC, and can be further tested to see which drugs it is susceptible to. The repeat CT is used to determine if the signs of infection are improving, and may be used in conjunction with repeat sputum culture.
In my case, the lung CT clearly showed improvement, with the cavities and clouded areas gone. My cough was better, and my sputum clear so even though there is still MAC in my culture, the doc decided 18 months was enough of an antibiotic assault on my body.
So now I am in wait and watch mode, nebbing 7% saline in hopes of keeping the remaining MAC from growing. The CT will likely be repeated after a year of if my symptoms return.

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Wishing you all the best, it's so good to read positive results for a patient of this disease. Blessings to you!

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NavyLady, I recognize your problem, but I cannot do much about it but give some simple advice. First, make absolutely certain your medicfolks can read, at least on a 3rd grad level. Mayo-AZ sent one of my samples to Mayo-MN to have it tested for Amyloidosis. My blood kin have been diagnosed with MM, Carnetine, Lupus, Crohn's, etc.. Mayo-MN tested the samples for TTR, and found there was no evidence of TTR. That report was distributed across the country. However, about 20 clinics, labs, hospitals, etc, read and made decisions that Mayo had confirmed I had no Amyloidosis. The report only said I had no TTR, which means we could rule out about half the Amy types. Mayo-MN even said "We could not rule out other Light Chain Amyloidosis types such as multiple myeloma, Lupus, etc." Afterward, Willamette Samaritan, OHSU, SCCCA, Stanford, and even Mayo-AZ reportedly sent out reports that I had been cleared of Amy by Mayo-MN. Therefore, I must be psychosociophysiodystrophic, or, in more common language, nuts. So the first bit of info one should get from a lab or clinic, even at the Mayo rank, is the actual reading capability level of the staff.

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@marellen

Hello. Thank you for being here. I was diagnosed with MAC 8 weeks ago at the University of Birmingham by a pulmonologist who did a bronchoscopy with several cultures and one grew out MAC.
I was started on 3 antibiotics Rifampin, Ehambutol and Azithromycin. High doses every day due to a cavitation. For the 5 weeks I’ve been taking the antibiotics, I have been nauseated and vomiting after taking the Ethambutol. Has anyone not tolerated the antibiotics? If so what did your doctor do?
I appreciate this group. Thank you. Carol

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Hi Carol. I was diagnosed with MAC and Pseudomonous early 2019 after bronchoscopy. Local pulmonary doc put me on the same meds as you daily to take on an empty stomach first thing in the morning. After a short period of time I would have nausea but not vomit. I also had numerous BM's every day. I am a slim person anyway and then lost 15 pounds, lost energy and appetite fell off the charts. My doctor relocated to Birmingham from Montgomery. After 6 weeks I developed what seemed to be turning into chronic sinus problems. On a follow up visit the doctor said I had to gain weight and get my sinus cleared up. Then he said to stop taking all the meds. I even asked if I had to take them all at once and he said yes. Either take them as ordered or not at all. Then the cherry on top, he said "You may just have to live with it." Lots more story and can post what happened next but have ran out of time at the moment. There is hope. Faye

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@marellen

Hello. Thank you for being here. I was diagnosed with MAC 8 weeks ago at the University of Birmingham by a pulmonologist who did a bronchoscopy with several cultures and one grew out MAC.
I was started on 3 antibiotics Rifampin, Ehambutol and Azithromycin. High doses every day due to a cavitation. For the 5 weeks I’ve been taking the antibiotics, I have been nauseated and vomiting after taking the Ethambutol. Has anyone not tolerated the antibiotics? If so what did your doctor do?
I appreciate this group. Thank you. Carol

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@marellen Your doctor probably put you on a 7 day/week regimen because of the cavity. I started with that treatment as well but was unable to tolerate it. With MAC you need to have a close relationship with your doctor. Talk to him or her! Your doctor may have to lower the dose of one or more of them. Some of us are on a 3 day (MWF) schedule. If you can tolerate two perhaps you could do an inhaled Arikayce which goes right to your lungs but is not without side effects. Talk to your doctor. I’m sorry you are experiencing those side effects. My guess is they are dose related. irene5

Liked by poodledoc

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@fdixon63

Hi Carol. I was diagnosed with MAC and Pseudomonous early 2019 after bronchoscopy. Local pulmonary doc put me on the same meds as you daily to take on an empty stomach first thing in the morning. After a short period of time I would have nausea but not vomit. I also had numerous BM's every day. I am a slim person anyway and then lost 15 pounds, lost energy and appetite fell off the charts. My doctor relocated to Birmingham from Montgomery. After 6 weeks I developed what seemed to be turning into chronic sinus problems. On a follow up visit the doctor said I had to gain weight and get my sinus cleared up. Then he said to stop taking all the meds. I even asked if I had to take them all at once and he said yes. Either take them as ordered or not at all. Then the cherry on top, he said "You may just have to live with it." Lots more story and can post what happened next but have ran out of time at the moment. There is hope. Faye

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@fdixon63 I would be very interested in “what happened next.” irene5

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@irene5

@marellen Your doctor probably put you on a 7 day/week regimen because of the cavity. I started with that treatment as well but was unable to tolerate it. With MAC you need to have a close relationship with your doctor. Talk to him or her! Your doctor may have to lower the dose of one or more of them. Some of us are on a 3 day (MWF) schedule. If you can tolerate two perhaps you could do an inhaled Arikayce which goes right to your lungs but is not without side effects. Talk to your doctor. I’m sorry you are experiencing those side effects. My guess is they are dose related. irene5

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None of this sounds good. I really don’t know what to do from here…thank you for your response.

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@marellen

None of this sounds good. I really don’t know what to do from here…thank you for your response.

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@marellen The best thing I can tell you is that you found an awesome support group here. There are many stages with this disease in terms of one’s emotions. The bottom line is life “before MAC and life after MAC.” We all lean on each for support, and it is helpful. Everyone’s journey is different, but like COVID 19 “we are all in this together.” And it will get better! irene5

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@marellen

Hello. Thank you for being here. I was diagnosed with MAC 8 weeks ago at the University of Birmingham by a pulmonologist who did a bronchoscopy with several cultures and one grew out MAC.
I was started on 3 antibiotics Rifampin, Ehambutol and Azithromycin. High doses every day due to a cavitation. For the 5 weeks I’ve been taking the antibiotics, I have been nauseated and vomiting after taking the Ethambutol. Has anyone not tolerated the antibiotics? If so what did your doctor do?
I appreciate this group. Thank you. Carol

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@marellen I too had problems with nausea from taking the drugs in the morning and on an empty stomach. I consultation with the pulmonologist's very experienced nurses (he was not very approachable) I switched to taking the meds at bedtime with a small amount of (non-dairy) food. I still had the nausea, but because I was asleep through a lot of it, it was tolerable. When I finally addressed it with the doc, he wasn't too happy, but said it was better to take it on that schedule than to quit. I initially was on 3X/week, then had to increase to daily due to cavities (since cleared!) – I don't think I could have tolerated daily at first. Maybe your doc would consider backing off for a while?
Also, I found it easier to deal with the nausea by eating very small amounts every hour or two, so my stomach was never empty or full. I had to force myself – sometimes literally setting a timer. Just make sure what you choose to eat is very nutritious – I chose cheese, yogurt, protein bars, fruit & vegetable smoothies made with extra protein powder, cashews, boiled eggs, as well as a few fruits.
Good luck!
Sue

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Hello. Thank you for being here. I was diagnosed with MAC 8 weeks ago at the University of Birmingham by a pulmonologist who did a bronchoscopy with several cultures and one grew out MAC.
I was started on 3 antibiotics Rifampin, Ehambutol and Azithromycin. High doses every day due to a cavitation. For the 5 weeks I’ve been taking the antibiotics, I have been nauseated and vomiting after taking the Ethambutol. Has anyone not tolerated the antibiotics? If so what did your doctor do?
I appreciate this group. Thank you. Carol

REPLY
@marellen

Hello. Thank you for being here. I was diagnosed with MAC 8 weeks ago at the University of Birmingham by a pulmonologist who did a bronchoscopy with several cultures and one grew out MAC.
I was started on 3 antibiotics Rifampin, Ehambutol and Azithromycin. High doses every day due to a cavitation. For the 5 weeks I’ve been taking the antibiotics, I have been nauseated and vomiting after taking the Ethambutol. Has anyone not tolerated the antibiotics? If so what did your doctor do?
I appreciate this group. Thank you. Carol

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Hi @marellen, I'd like to also add my welcome. I moved your messages to this discussion
– Bronchiectasis: New Diagnosis https://connect.mayoclinic.org/discussion/bronchiectasis-new-diagnosis/

Here are a few discussions that I recommend reading (and joining in):
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
– You can feel better! https://connect.mayoclinic.org/discussion/you-can-feel-better/
– NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/

I encourage you to browse through all the discussions. See a list of all of them here: https://connect.mayoclinic.org/group/mac-bronchiectasis/

Keep asking questions and then ask some more.

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@marellen

None of this sounds good. I really don’t know what to do from here…thank you for your response.

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@marellen For nausea I had Ginger lollies and licorice and ginger tea, it was fantastic and all natural.

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@fdixon63

Hi Carol. I was diagnosed with MAC and Pseudomonous early 2019 after bronchoscopy. Local pulmonary doc put me on the same meds as you daily to take on an empty stomach first thing in the morning. After a short period of time I would have nausea but not vomit. I also had numerous BM's every day. I am a slim person anyway and then lost 15 pounds, lost energy and appetite fell off the charts. My doctor relocated to Birmingham from Montgomery. After 6 weeks I developed what seemed to be turning into chronic sinus problems. On a follow up visit the doctor said I had to gain weight and get my sinus cleared up. Then he said to stop taking all the meds. I even asked if I had to take them all at once and he said yes. Either take them as ordered or not at all. Then the cherry on top, he said "You may just have to live with it." Lots more story and can post what happened next but have ran out of time at the moment. There is hope. Faye

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@marellen. Sorry I could not finish my post this morning. When the pulmonary doc. said "You may just have to live with it" I was stunned and afraid. Also wanted to mention that he nor his staff ever gave me a single piece of literature about this disease or possible treatment. It so happens my sister in law is a retired nurse at Mayo in MN. In talking with her she knew about Mayo Connect and suggested that I get on line with the group to see it there was anything I could learn there. I read posts for a couple of days and then decided to post my experience to that point. Within a couple of days a woman in the Birmingham area sent me a message saying she had a similar experience with a doctor in Birmingham. She started reaching out and found a doctor in Atlanta. She had seen him twice and was extremely pleased with him. She shared his contact information with me. I felt I needed to try to get an appt. with this doctor. I called in August and they said it would be February before I could see him. OK, I'll try and live till then. Now here is where God took over. (He was really at work before that.) Anyway, the doctors office called me in just a few days and said, "Can you come Friday." Wow, you bet I can. I'm getting too wordy but it has been such an experience. I went to Atlanta and when I left I was walking on air. This doctor knew what he was doing. He said I probably should not have been on medication at all. I walked out of his office with a nebulizer and a prescription for 3% Sodium Chloride and a lot of printed literature. My first sputum to him grew out Pseudomonas (multiple colonies). I had to have a PICC line in place for 2 weeks and nebulize Tobramycin for 28 days. That cleared things for a period of months. I again tested positive for Pseudomonas in February 2020 but not as severe as last September and I'm finishing up another round of Tobramycin this next week. I will then send in more sputum to see if it is gone. Dealing with this disease at times is tiring, frustrating and mystifying. Don't be afraid of getting another opinion. I have learned so much from this group–thank God for each and every one of these wonderful folks who step up and share. Because of reading about the difference between 3% and 7% Sod. Chloride I contacted my doctor and asked if he would change my prescription–he did. OK, I gone through all I could think of and hope it was hopeful. We must be brave and advocate for ourselves through this journey we're on. May God bless you.
Faye

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