41 with MAC and Haemophilus Influenzae

If you go to Mayo you'll be assigned a doctor who knows about Bronchiectasis and MAC and haemophilus. I have all three, but am much older than you. A huge flare this spring allowed both the MAC and HI to run rampant; I got persistant pneumonia: the result being I'm on the big 3 plus brinsupri. The meds are doable, you just have to plan when to take them (with food, what time of day, etc). If you have a young daughter, you may be a person that wants to take the meds in the evening after she has gone to bed. If you're quite symptomatic, they may want you to start the meds, which you may be eager to do, in that you'd be on the path to feeling better.

As young as you are I would consider going to Mayo or if possible National Jewish Hospital/Clinic in Denver.
Go right to the best to start with unless someone knows of a someone as good as those at these two facilites.
I am flagging @kathyjjb who might have some information to help you since you are in Arizona.
Wish you didn't have to deal with all that goes along with this/these health problems. With help from the right doctors and facility, doing the work that comes with our health problem including eating healthy and air way clearance techniquies...you should be able to live with it all and enjoy your daughter as she grows into womanhood.
Barbara

@ursala7 Hello Liz... Noticed you indicated persistant pneumonia. Did it all require hospitalization and if so what did you have to have done while in the hospital.
The one time I had pneumonia in the mid 80's (Legionella and Mycoplasma at the same time) I was on an liquid IV 24/7 antibiotic. I did not have to have a ventilator, nor if I remember correctly, I did not need oxygen either. I went to the doctor immediately when I knew something was wrong. I just didn't feel well and that was unusual for me. He had me come in the next day after I called him and he ordered the XRay and then marched me next door to the hospital.

The one thing I keep wondering about is how and what others expereinced if they came down with pneumonia. I would imagine probably differerent scenarios with each person depending upon timing and how bad the pneumonia was by the time they went to the doctor.

So, I would like to have an idea from others, before I possibly ever contract pneumonia, now that I have Bronchiectasis and MAI infection, what are some of the things others went through, the timing, seiousness of it and what was done for them during the episode.
Barbara

@blm1007blm1007 Hi - yes, had pneumonia many times. Always came down with severe symptoms, usually in correlation with influenza and sought help right away. Mostly got over it readily with antibiotics, except one time when I was about 53, they said, "you'll fight this off on your own - it's the crud circulating and it'll take several weeks". Well, that neglect cost me a lot of lung damage.
I was never hospitalized until this year - two times, back to back, plus sepsis. They let me out too soon, and the oral antibiotics I was discharged with were not killing the bacteria, so back again. That's what sent me to the pulmonologist and got me on the big 3 and Brinsupri. But I'm still infected, so I took it upon myself to go to Mayo - appointment in Nov. Every day is a challenge of some kind.

@ursala7 Thanks for sharing. How are you faring with the big 3 medications? Any tips? 🙂 Praying for your full recovery. 🙏

Hi,

FIRST: Beware of what's online, lots of untrue and outdated information. I think it's pretty rare for someone to die from MAC. I've been on this site for 2 years and I haven't heard of anyone dying from just "MAC", including those that were diagnosed 20 years ago, or more. Possibly, if one has very severe lung damage-but these days there's lung resection for that. And the future advancements are promising, e.g. phage therapy, new antibiotics, etc. I totally agree with Barbara, you should be around for a long time to enjoy your daughter as a woman.

I live in Scottsdale AZ and there is a Center of Excellence for NTM/BE in Phoenix. Their location and contact information is:

Norton Thoracic Institute at St. Josephs Hospital and Medical Center
500 W Thomas Rd
Phoenix, AZ 85013
(602) 406-4000

I requested a list of doctors there that specialize in BE/NTM from the National Association for BE/NTM and will send via private message. You might want to call and inquire as well but the NTM Association may provide more specific information in regard to an MD's experience and background.

I would also recommend National Jewish Health. Many on this site (including me) have local doctors and doctors at NJH. In my opinion, NJH is the best of the best. The "Centers of Excellence" are trained by NJH. I went for about 9 days, and it was the best decision I made. The locally prescribed treatment that I had just started for M. Abscessus was scrapped-the first week by my NJH ID Dr.
Keep us posted.
Kathy

@kathyjjb thanks so much! You have given me hope. May I ask how much roughly you had to set aside in amount for 9 days in National Jewish Health? Is it expensive? Or worth it? Thanks. Also, does that mean you recommend Norton Thoracic more than Mayo? 🙂 I am unsure how to proceed…

@silvermic22 So glad Kathy was able to see and respond to you. Thanks Kathy.

Many of us here on Mayo Connect are retired, of course some are not.
Original Medicare and my Supplement Insurance paid for all the medical, other than my "small deductible" with my visit to NJH.
If you have health insurance look into a couple of things to be sure you know if they will pay for the visit to National Jewish. Surely with your condtion they will approve your going.
You can call the financial department at National Jewish to see if they can help and advise you with regard to your insurance paying. I would call National Jewish first to be proactive. However, no matter the type of conversation you have at National Jewish, still call your insurance carrier to get approval if you feel you want to try to go to NJH. I take it your insurance company already knows of your health problem.

Many of the hotels, Marriot Residence Inn for example, give medical discounts. You just have to tell them that you are there for NJH.
Barbara

@silvermic22 Thanks! It has been a bit rough. I have to take the azithromycin mid-day with food, because I get some stomach pains from it. I have slight numbing in the toes from Ethambutol. The Rifabutin is discoloring my teeth - most of that came off with cleaning, so we upped the cleaning schedule to 3X per year. I'm also on Brinsupri and have some hair loss. I have lost weight. I remind myself of my long-gone shitzu dog, Sonja. Wish she was here to be with me now.
All this would be worth it IF I could kick the infection, but so far, I have not. The daytime is ok, I move around like normal and do all my therapy, but the nights are much worse, as the congestion builds and keeps me from sleeping, or I get stiff trying to sleep as upright as I can. I keep telling myself "This too shall pass".

@silvermic22 Postcript to how am I feeling: In all the big 3 is tolerable, even for an almost 77 year old. But because my bronchiectasis is so advanced, the MAC will be difficult to eradicate - therefore the plan is to go to MAYO to be sure I am getting the best drug treatment plan. You are only half my age. It's a silver lining you got diagnosed; by getting treatment early, you'll have all the tools required to keep your disease from progressing. I didn't even know/understand that I had this when I was in my 40's, but looking back on the illnesses I had, it's pretty plain to see that i DID have it that early. My mother also had something like this, which was forever undiagnosed. But the same symptoms. She died after many pneumonias and her bacteria became resistant. The docs were as unaware as the general public back then, as to the term Bronchiectasis. Everything was labeled COPD.