Connect
← Return to Did anyone get diagnosis with no breathing issues, life long controlle
Discussion
Did anyone get diagnosis with no breathing issues, life long controlle
MAC & Bronchiectasis | Last Active: Dec 10, 2024 | Replies (12)Comment receiving replies
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.
Replies to "They found I had pneumonia when they did an x-ray at urgent care. I was told..."
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?
Connect
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.