Did anyone get diagnosis with no breathing issues, life long controlle

Posted by Kristi H. @ldylouis, Dec 8, 2024

I went to an urgent care to get the whining done dose of prednisone and he said i had pneumonia. All test came back negative and the played the antibiotic rounds with no affect. The thin was, I wasn’t gaveling trouble breathing. I was working as a substitute in middle and elementary classes with no issues.

I fought a cold around thanks giving. I went thru the normal rounds, no real issues with breathing. Then Fri. after Thanksgiving I got the call that was left as a message and started the antibiotics since. I have only gone down hill since. My pulmonologist, who I saw for the first time. I made the appt 2 months ago. It was the soonest I could get in and he prescribed Breo and my insurance wouldn’t pay for it. He had 4 messages left about it and by Friday night, 4 days of calls and faxes, I found a coupon and bought it out right. Great for mental health when I can’t do my job that is a half my usual pay and hubby is retired.

Has anyone gotten worse like I have?
Anyone have no immunocompromised issues like me?
Is anyone else scared I will become an in a wheelchair on O2 or a hospice hospital at 62?

I can’t get answers from anyone. All they say is I’ll be fine. I need to see the infectious control people to make sure I’m on the right 3, yet no idea of when while taking them anyway. What do I do?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sorry meant winding down dose of prednisone

REPLY
@ldylouis

Sorry meant winding down dose of prednisone

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Welcome to Mayo Connect where we are a community of people and their caregivers navigating the waters of many illnesses and conditions.

Can you give us a little more information about yourself and whether you have been diagnosed with Bronchiectasis and MAC? If so, and you have been asking Dr Google, you must be concerned about what you are reading - lots of the postings can sound pretty dire.

Rest assured that many of us are walking (or running) around many years after our initial diagnosis. Once you get a good pulmonologist who is familiar with these conditions, you should be having either a sputum culture or bronchoscopy to determine exactly what infection is in your lungs AND imaging and a full exam with medical history to determine how severe it is.

Only then is it time to talk about whether to take antibiotics and which ones. Many in this group manage their condition without antibiotics.

What led you to consult a pulmonologist?

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@sueinmn

Welcome to Mayo Connect where we are a community of people and their caregivers navigating the waters of many illnesses and conditions.

Can you give us a little more information about yourself and whether you have been diagnosed with Bronchiectasis and MAC? If so, and you have been asking Dr Google, you must be concerned about what you are reading - lots of the postings can sound pretty dire.

Rest assured that many of us are walking (or running) around many years after our initial diagnosis. Once you get a good pulmonologist who is familiar with these conditions, you should be having either a sputum culture or bronchoscopy to determine exactly what infection is in your lungs AND imaging and a full exam with medical history to determine how severe it is.

Only then is it time to talk about whether to take antibiotics and which ones. Many in this group manage their condition without antibiotics.

What led you to consult a pulmonologist?

Jump to this post

They found I had pneumonia when they did an x-ray at urgent care. I was told to go to the ER because I had already gone through 3 different antibiotics, and none were working. At the ER, they admitted me, did a CAT scan, and called a pulmonologist who did a bronchoscope or wash. All tests on the wash came back negative until right after Thanksgiving. I was in the hospital the first week of Oct.

My primary already wanted me to be seen by a pulmonologist after the hospital stay. The soonest I could get in was Oct. 3. At that appointment, even the doctor said I should have been seen sooner, yet his people didn't try.

So, as you know, this group is the top group in Southern California for all pulmonary services.

At that appointment, he showed me damage to my lungs and holes in the lower lobes, which he says have been there a long time. I am a severe, controlled asthmatic. I mean I use a repit enhaler and have to watch when I catch a cold, but I haven't been hospitalized in over 20 years. In all my ears of x-rays, no one ever saw any damage to my lungs before. I also have never had pneumonia in my life either.

He also said I needed to see an Infectious disease specialist to make sure I was taking the right antibiotics, yet I had no idea when that would happen. I am still taking the 3; everyone else takes it 3 times a week.

He wanted me to start the inhaled steroid called Breo, which turned into a mess with no one getting any contact back for a week.

I got some prednisone Fri. because I have been going downhill with my shortness of breath, and I know from experience it works. I was doing so much better yesterday, but I'm back to the tightening chest today.

I went from finding out I was sick with no symptoms to finding out I have this MAC with no pre-conditions that would make me susceptible to it, to getting sicker and sicker with nothing or no one seeming to realize I am going downhill.

I only checked online to see what it was after the PA left the message, and I couldn't get ahold of her. It was Friday, Thanksgiving weekend, and even my doctor's office was closed. It was pretty optimistic about what could be done. It is the lack of response from Doctors with my health going downhill. I am almost ready to head to the ER, which may not do me any good from experience. I want to go to my primary office tomorrow and insist I talk with someone and then have them help me get into the pulmonologist or find out what I need to do to stop this downturn in my health. I'm trying to remain calm, and it is getting harder and harder.

REPLY
@ldylouis

They found I had pneumonia when they did an x-ray at urgent care. I was told to go to the ER because I had already gone through 3 different antibiotics, and none were working. At the ER, they admitted me, did a CAT scan, and called a pulmonologist who did a bronchoscope or wash. All tests on the wash came back negative until right after Thanksgiving. I was in the hospital the first week of Oct.

My primary already wanted me to be seen by a pulmonologist after the hospital stay. The soonest I could get in was Oct. 3. At that appointment, even the doctor said I should have been seen sooner, yet his people didn't try.

So, as you know, this group is the top group in Southern California for all pulmonary services.

At that appointment, he showed me damage to my lungs and holes in the lower lobes, which he says have been there a long time. I am a severe, controlled asthmatic. I mean I use a repit enhaler and have to watch when I catch a cold, but I haven't been hospitalized in over 20 years. In all my ears of x-rays, no one ever saw any damage to my lungs before. I also have never had pneumonia in my life either.

He also said I needed to see an Infectious disease specialist to make sure I was taking the right antibiotics, yet I had no idea when that would happen. I am still taking the 3; everyone else takes it 3 times a week.

He wanted me to start the inhaled steroid called Breo, which turned into a mess with no one getting any contact back for a week.

I got some prednisone Fri. because I have been going downhill with my shortness of breath, and I know from experience it works. I was doing so much better yesterday, but I'm back to the tightening chest today.

I went from finding out I was sick with no symptoms to finding out I have this MAC with no pre-conditions that would make me susceptible to it, to getting sicker and sicker with nothing or no one seeming to realize I am going downhill.

I only checked online to see what it was after the PA left the message, and I couldn't get ahold of her. It was Friday, Thanksgiving weekend, and even my doctor's office was closed. It was pretty optimistic about what could be done. It is the lack of response from Doctors with my health going downhill. I am almost ready to head to the ER, which may not do me any good from experience. I want to go to my primary office tomorrow and insist I talk with someone and then have them help me get into the pulmonologist or find out what I need to do to stop this downturn in my health. I'm trying to remain calm, and it is getting harder and harder.

Jump to this post

It sounds very frustrating. It sounds like you need clarity on a few things. Just to make sure I’m understand…
Did the bronchoscopy culture grow MAC? It takes 6 weeks to get result since the organism is a slow grower. That’s probably the reason you found out late.
Does your CT show bronchiectasis, a widened part of airways?
If so, you should ask docs for information on airway clearance to help get the mucus out. It is one of the cornerstones of treatment of bronchiectasis. There are video’s online, esp one by Dr McShane, a MAC specialist..

I’m unclear about your infectious disease doc appt status. If you have MAC, then seeing one helps. Did they give you a name of one your pulmonary doc likes to work with? Ask his office for name and/or referral if they haven’t arranged an appointment.

MAC isn’t common and some pulmonologists see few patients with it. I searched for a “bronchiectasis and MAC program” to find a doc familiar with it after going to Mayo Clinic for a diagnosis/plan (and my cultures were negative to docs’ surprise). My first months were similar to yours-very frustrating (and I was sick!) until I sought providers who are familiar with treatment. I am doing well now with inhalers (mild asthma), sinus washes and airway clearance.
Make a list, prioritizing your questions to ensure top ones get answered.

Good luck to you. You’ll find a lot of caring help here.

REPLY
@ldylouis

They found I had pneumonia when they did an x-ray at urgent care. I was told to go to the ER because I had already gone through 3 different antibiotics, and none were working. At the ER, they admitted me, did a CAT scan, and called a pulmonologist who did a bronchoscope or wash. All tests on the wash came back negative until right after Thanksgiving. I was in the hospital the first week of Oct.

My primary already wanted me to be seen by a pulmonologist after the hospital stay. The soonest I could get in was Oct. 3. At that appointment, even the doctor said I should have been seen sooner, yet his people didn't try.

So, as you know, this group is the top group in Southern California for all pulmonary services.

At that appointment, he showed me damage to my lungs and holes in the lower lobes, which he says have been there a long time. I am a severe, controlled asthmatic. I mean I use a repit enhaler and have to watch when I catch a cold, but I haven't been hospitalized in over 20 years. In all my ears of x-rays, no one ever saw any damage to my lungs before. I also have never had pneumonia in my life either.

He also said I needed to see an Infectious disease specialist to make sure I was taking the right antibiotics, yet I had no idea when that would happen. I am still taking the 3; everyone else takes it 3 times a week.

He wanted me to start the inhaled steroid called Breo, which turned into a mess with no one getting any contact back for a week.

I got some prednisone Fri. because I have been going downhill with my shortness of breath, and I know from experience it works. I was doing so much better yesterday, but I'm back to the tightening chest today.

I went from finding out I was sick with no symptoms to finding out I have this MAC with no pre-conditions that would make me susceptible to it, to getting sicker and sicker with nothing or no one seeming to realize I am going downhill.

I only checked online to see what it was after the PA left the message, and I couldn't get ahold of her. It was Friday, Thanksgiving weekend, and even my doctor's office was closed. It was pretty optimistic about what could be done. It is the lack of response from Doctors with my health going downhill. I am almost ready to head to the ER, which may not do me any good from experience. I want to go to my primary office tomorrow and insist I talk with someone and then have them help me get into the pulmonologist or find out what I need to do to stop this downturn in my health. I'm trying to remain calm, and it is getting harder and harder.

Jump to this post

Yikes, as Cathy said, you need to get to an answer.
I see you say you have severe but controlled asthma - that is definitely a pre-condition that can make us susceptible to MAC and Bronchiectasis. It sounds to me like you need to call the Pulmonology Group (or look on their website) to see if they list anyone who specializes in Bronchiectasis, MAC or NTM (another term for MAC). It is pretty rare, so not many doctors are experts in it.

I understand the feeling of "going downhill" - when I was first diagnosed and started taking azithromycin, ethambutol and rifampin, I felt even worse than before due to both the infection and the side effects of the medications as my body adjusted to them. I had nausea, body aches fatigue and fever, and wondered if I would ever feel well again! But then, the drugs, healthy food, airway clearance and rest did their job and I gradually got better. That was 5 years ago (seems hard to believe now how sick I was then) and I have been infection free since then.
Do you think that might be what is happening to you?

Did the doctors explain that this is a very slow-growing bacteria which has been in your lungs for a long time, and it can take many months to clear up? Or that you will need to take the antibiotics for a year or more?
I don't blame you for being upset - the poor communication would not make me happy either. Have you been able to speak to someone directly now that Thanksgiving is past?

REPLY

I was diagnosed with MAC and bronchiectasis this past June. I basically have no symptoms except occasional shortness of breath and a bit of a dry cough at times. I don't feel sick at all. I had to have a CT scan of my right shoulder due to needing shoulder surgery. The radiologist reported seeing some suspicious things in my right lung. The orthopedic Dr sent me to see a pulmonologist. The pulmonologist ordered his own CT scan of both lungs. This led to a bronchoscopy...which led to finding out Ihad MAC and bronchiectasis. I was shocked! I had no idea I had something damaging my lungs. While no one can definitively say how I got MAC...it's most likely from gardening - soil, mulch, and possibly all the contact and caring for the chickens. I understand your concerns!!!! It can feel quite overwhelming! I am a retired teacher and was also subbing. I've decided not to sub any longer due to all the upper respiratory germs I was getting exposed to constantly. This forum has really helped me. I also have a good pulmonologist and infectious disease doctor. They have agreed (somewhat reluctantly) to let me take a watch and wait stance for now. But, I'm being careful and paying attention to not purposely expose myself to things which might exacerbate the MAC/BE. I wish you all the best and hope your doctors can help you feel confident about the treatments best for your situation.

REPLY
@sueinmn

Yikes, as Cathy said, you need to get to an answer.
I see you say you have severe but controlled asthma - that is definitely a pre-condition that can make us susceptible to MAC and Bronchiectasis. It sounds to me like you need to call the Pulmonology Group (or look on their website) to see if they list anyone who specializes in Bronchiectasis, MAC or NTM (another term for MAC). It is pretty rare, so not many doctors are experts in it.

I understand the feeling of "going downhill" - when I was first diagnosed and started taking azithromycin, ethambutol and rifampin, I felt even worse than before due to both the infection and the side effects of the medications as my body adjusted to them. I had nausea, body aches fatigue and fever, and wondered if I would ever feel well again! But then, the drugs, healthy food, airway clearance and rest did their job and I gradually got better. That was 5 years ago (seems hard to believe now how sick I was then) and I have been infection free since then.
Do you think that might be what is happening to you?

Did the doctors explain that this is a very slow-growing bacteria which has been in your lungs for a long time, and it can take many months to clear up? Or that you will need to take the antibiotics for a year or more?
I don't blame you for being upset - the poor communication would not make me happy either. Have you been able to speak to someone directly now that Thanksgiving is past?

Jump to this post

It does sound like what I might be going through. I am on an oral steroid to open the bronchial airway. My only contact with the pulmonologist was the appointment on the 3rd of Dec. Even today, I had to leave a message for a call back on their appointment line. I have an appointment with my GP, and I hope he will help me. qw

The steroids and prednisone I got over the weekend have made a world of difference. I need to convince my GP that I need them, and he will work with me until I can get things settled with the Pulmonologist.

REPLY
@greenly

I was diagnosed with MAC and bronchiectasis this past June. I basically have no symptoms except occasional shortness of breath and a bit of a dry cough at times. I don't feel sick at all. I had to have a CT scan of my right shoulder due to needing shoulder surgery. The radiologist reported seeing some suspicious things in my right lung. The orthopedic Dr sent me to see a pulmonologist. The pulmonologist ordered his own CT scan of both lungs. This led to a bronchoscopy...which led to finding out Ihad MAC and bronchiectasis. I was shocked! I had no idea I had something damaging my lungs. While no one can definitively say how I got MAC...it's most likely from gardening - soil, mulch, and possibly all the contact and caring for the chickens. I understand your concerns!!!! It can feel quite overwhelming! I am a retired teacher and was also subbing. I've decided not to sub any longer due to all the upper respiratory germs I was getting exposed to constantly. This forum has really helped me. I also have a good pulmonologist and infectious disease doctor. They have agreed (somewhat reluctantly) to let me take a watch and wait stance for now. But, I'm being careful and paying attention to not purposely expose myself to things which might exacerbate the MAC/BE. I wish you all the best and hope your doctors can help you feel confident about the treatments best for your situation.

Jump to this post

That is exactly my case, well, except finding it like you did. I did catch a cold the week before Thanksgiving, and I think that is really what set me spiraling.

I just got my clear credentials last June. I changed careers, and now I am dealing with financial problems. My husband is retired, so he has a fixed income. I was making such good money and finally making a difference in our finances, and now... I hadn't thought about not being able to work because of exposure to infection. I am working as a sub until I find a full-time teaching position. There are fully online jobs I have applied for. I will revisit them and let them know I need to be working online or not.

REPLY

I did it again and posted before I had finished. I want to thank everyone for being there so quickly. These days, I feel like no one is checking messages or boards, not just my doctors. And then the help is invaluable.

REPLY
@greenly

I was diagnosed with MAC and bronchiectasis this past June. I basically have no symptoms except occasional shortness of breath and a bit of a dry cough at times. I don't feel sick at all. I had to have a CT scan of my right shoulder due to needing shoulder surgery. The radiologist reported seeing some suspicious things in my right lung. The orthopedic Dr sent me to see a pulmonologist. The pulmonologist ordered his own CT scan of both lungs. This led to a bronchoscopy...which led to finding out Ihad MAC and bronchiectasis. I was shocked! I had no idea I had something damaging my lungs. While no one can definitively say how I got MAC...it's most likely from gardening - soil, mulch, and possibly all the contact and caring for the chickens. I understand your concerns!!!! It can feel quite overwhelming! I am a retired teacher and was also subbing. I've decided not to sub any longer due to all the upper respiratory germs I was getting exposed to constantly. This forum has really helped me. I also have a good pulmonologist and infectious disease doctor. They have agreed (somewhat reluctantly) to let me take a watch and wait stance for now. But, I'm being careful and paying attention to not purposely expose myself to things which might exacerbate the MAC/BE. I wish you all the best and hope your doctors can help you feel confident about the treatments best for your situation.

Jump to this post

I too found out I had MAC and bronchitis by chance
I have a slight cough and pressure in my chest at times. I have decided not to take the antibiotics for now
How are you maintaining and what are your symptoms?

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