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Update on my diagnosis and treatment
I just got back from my pulmonologist, and I now know this.
Yes, I have Mac and Bronchiectasis. He is treating the Bronchiectasis with a new inhaled medicine, which I believe is a steroid called Breztra at the highest dosage possible. He is also treating what appears to be a standard infection with an antibiotic for a week. All of this checks out with what I know about myself and how I react to meds.
I asked about Cavitary MAC. He said he believes the damage to my lungs, which might be the start of cavitary, is from either or both the MAC and the Bronchiectasis. He believes treating the Bronchiectasis will help take care of that, and the big three might take care of the Mac, or I may not need it after a while.
I also have some blood work he wants, and my regular doctor wants theirs done. These should help more. Then, the pulmonary therapist's appointment with a lung function on the 20th should end most questions for now.
On a side note, when the PA I saw at my doctor's office where the blood tests were ordered said something like, "We also need to work on other problems." I asked what other problems I had; I'm usually quite healthy. I'm joking, but you're 62. There are tests and such to be taken now. 60 was not a good year for me, and I still have not yet come to grips with this age. My Mom is 90 and is running around for me between her gym 3 days a week and her local and federal activities on historical boards. So, 60 for me is 40.
Sorry about the end rant. Over and out for now with a great big thank you to all on here with your great words of support and help,
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Piggy-backing on Sue's info, a pulmonologist and/or infectious disease doctor who specializes in bronchiectasis and MAC is invaluable. NTM Info & Research (NTMir) has a physcian referral list that you may find helpful at https://ntminfo.org/united-states-of-america/.
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1 ReactionThank you. I will check it out.
I checked into a specialist for the MAC and Bronchiectasis I was diagnosed with by chance. I was not responding to antibiotics for bronchitis, and they took an x-ray, saw it was pneumonia, and admitted me to the hospital for IV antibiotics and a bronchial wash. After 6 weeks, the diagnosis came back the day after Thanksgiving.
I just found out my pulmonologist had sent a referral to my insurance for the infectious disease doctor. My insurance allows me to see whomever I want without a referral. If they take my insurance, they pay just like I was referred. I called an ID doctor, not realizing it was lunchtime. I will wait and see if they answer my message, or I will call back.
As for specialists, there is one in San Diego, then one in LA, and I live closer to the one in SD, but that is still 70 miles away. I will see how the ID doctor goes, and if it looks like I should get the specialist, I will call one. The doctor in San Diego works for the USD Medical Group. They are known as the best for lung disease and transplants. My husband was sent to see if he could get on the transplant list, even though he has no breathing issues right now. The doctor was being proactive in case he should suddenly go downhill very quickly. Unfortunately or fortunately, he is too well to be even considered for the list right now. This shows that the doctor he and I see looks ahead and plans for everything. They are also the reason that my husband's diagnosis 11 years ago of pulmonary fibrosis has not changed at all. He caught it early because he exercised every day and noticed he was getting winded on the elliptical sooner. The PA he sees for general care recognized it and referred him to the pulmonary group we go to now.
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