1. < MAC & Bronchiectasis

Jewish hospital appt

Posted by msk @msk, Dec 24, 2022

Hi yesterday i got my call from denver to schedule my appointment for a second opinion. It will happen in march. Its a two week schedule, they say i will have lots if test
I know some of you have been there could you share your experience and did you get answers. I have been on 3 meds for almost a year and started arikacy 1 mo ago. I was diagnosed as mild to moderate but still positive. Its crazy.
Per my infectious diseases due to bronchiectasis the probability of mac returning is pretty high.
Thanks miriam

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raney | @raney | Dec 31, 2022

Thank you. That is they way I would have to travel.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 31, 2022
In reply to @raney "I am seeing another Dr at UNC-CH but i noticed with my very 1st appointment over..." + (show)
@raney

I am seeing another Dr at UNC-CH but i noticed with my very 1st appointment over a year ago , that Dr. Daniels name was on all the orders for tests and studies during that initial visit.
I am concerned mostly because the doctor I see has to spend so much of her time in the pediatric clinic. She is not full time in the adult pulmo clinic.

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I'm curious as to why her split schedule concerns you. In this day of electronic charts, is she still able to respond to your concerns?
I feel like a doctor so much in demand that their time is split is the one I want to see...
Sue

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raney | @raney | Dec 31, 2022

She responds promptly and orders meds, text, etc promptly
My concern is the difference in the overall needs of each group
Peds vs geriatric. I think she may be fairly new because she is not pictured (listed) on the web site with all the other docs in the Pulmonary Specialty Clinic.
I am wondering if I am getting the best treatment. I am still spending 4 to 5 hours every day getting the mucus out of my lungs . Clear and very thick.. Sputum culture in Sept just showed the fungus that causes thrush

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3 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 31, 2022
In reply to @raney "She responds promptly and orders meds, text, etc promptly My concern is the difference in the..." + (show)
@raney

She responds promptly and orders meds, text, etc promptly
My concern is the difference in the overall needs of each group
Peds vs geriatric. I think she may be fairly new because she is not pictured (listed) on the web site with all the other docs in the Pulmonary Specialty Clinic.
I am wondering if I am getting the best treatment. I am still spending 4 to 5 hours every day getting the mucus out of my lungs . Clear and very thick.. Sputum culture in Sept just showed the fungus that causes thrush

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Well, my pulmonologist treats me, 2 daughters and my grandson - and I believe she does a very good job with each of us. I guess I wouldn't see it as an issue, especially as she is affiliated with some of the best docs for your condition.

Of more concern to me is "...still spending 4 to 5 hours every day getting the mucus out of my lungs . Clear and very thick.. " Even at my sickest & worst, it never took 2 hours a day to do airway clearance.

What steps are you taking to thin the mucus? Are you exercising vigorously at least once a day? (it really gets that stuff moving!)

Sue

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1 reply
raney | @raney | Dec 31, 2022
In reply to @kwi "Raney, I recently went to NJH for my first visit. We live in GA, rented a..." + (show)
@kwi

Raney, I recently went to NJH for my first visit. We live in GA, rented a car and drove to Denver. We have an elderly dog and didn’t want to subject her to flying and with her health issues, didn’t want to leave in the care of others. I did my air clearance in the evening after we checked in at the hotels. I didn’t take the time to do my morning clearance before we left in the mornings so we could get on the road. I have a Pari Trek nebulizer for travel and it has a car adapter, so I could have used it while my husband was driving and I should have but I didn’t. I kept a large box of Kleenix in the car in case I needed to cough up anything while we were traveling. It was around 1435 miles for us and we spent 4 days and 3 nights getting there without exhausting ourselves. We also allowed ourselves a full day to settle in at Denver between arriving there and our first day at the hospital.

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Thank you. That is helpful info and the only way I could go.

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raney | @raney | Dec 31, 2022
In reply to @sueinmn "Well, my pulmonologist treats me, 2 daughters and my grandson - and I believe she does..." + (show)
@sueinmn

Well, my pulmonologist treats me, 2 daughters and my grandson - and I believe she does a very good job with each of us. I guess I wouldn't see it as an issue, especially as she is affiliated with some of the best docs for your condition.

Of more concern to me is "...still spending 4 to 5 hours every day getting the mucus out of my lungs . Clear and very thick.. " Even at my sickest & worst, it never took 2 hours a day to do airway clearance.

What steps are you taking to thin the mucus? Are you exercising vigorously at least once a day? (it really gets that stuff moving!)

Sue

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Thank you, Sue. I am taking 1200 mg. of Mucinex 2 X a day.
Nebulizing 2 times a day.
Levalbuterol
7% saline (usually have to use 2 vials because the mucus is thick.). In between inhaling the 7% saline, I am jumping up and down and going to bathroom sink and gargling and using nettie pot with saline packets to get the mucus out. '
I also use the Smart Vest
Exercise: I am not exercising vigorously every day. I do join the Virtual Challenges and that is a motivator to get out and walk. about 1.5 miles a day. I have not done that during this month, because of the weather. I live at a place that has a gym and indoor pool. I stopped going to the water exercise classes this summer because the pool area was so hot, and I was concerned about breathing MAC. I do best with water exercises because of sever osteoarthritis and arthritis in hips and knees.
I am trying to take in more fluids.
CPAP for the past 6+ months but the amount of mucus and the time it takes to clear my airway so that I am not clearing my. throat constantly has not changed in almost 3 years.

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1 reply
nana43 | @nana43 | Jan 1, 2023
In reply to @raney "She responds promptly and orders meds, text, etc promptly My concern is the difference in the..." + (show)
@raney

She responds promptly and orders meds, text, etc promptly
My concern is the difference in the overall needs of each group
Peds vs geriatric. I think she may be fairly new because she is not pictured (listed) on the web site with all the other docs in the Pulmonary Specialty Clinic.
I am wondering if I am getting the best treatment. I am still spending 4 to 5 hours every day getting the mucus out of my lungs . Clear and very thick.. Sputum culture in Sept just showed the fungus that causes thrush

Jump to this post

Hey Raney
I go to UNC as well, and you are probably seeing a”fellow”. This is a teaching hospital and a fellow is like an intern of sorts. They have to work under a specialty doctor for 2 years I think. I started out with one as well and then switched because of complexities of MAC and definitely wanted someone with knowledge and experience. However, with that being said- Mary Daniels IS one of the best in the field. I couldn’t get an appt with her so referred to a colleague. So if she is following your fellow you are in good hands!
Blessings,
Dee

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 1, 2023
In reply to @raney "Thank you, Sue. I am taking 1200 mg. of Mucinex 2 X a day. Nebulizing 2..." + (show)
@raney

Thank you, Sue. I am taking 1200 mg. of Mucinex 2 X a day.
Nebulizing 2 times a day.
Levalbuterol
7% saline (usually have to use 2 vials because the mucus is thick.). In between inhaling the 7% saline, I am jumping up and down and going to bathroom sink and gargling and using nettie pot with saline packets to get the mucus out. '
I also use the Smart Vest
Exercise: I am not exercising vigorously every day. I do join the Virtual Challenges and that is a motivator to get out and walk. about 1.5 miles a day. I have not done that during this month, because of the weather. I live at a place that has a gym and indoor pool. I stopped going to the water exercise classes this summer because the pool area was so hot, and I was concerned about breathing MAC. I do best with water exercises because of sever osteoarthritis and arthritis in hips and knees.
I am trying to take in more fluids.
CPAP for the past 6+ months but the amount of mucus and the time it takes to clear my airway so that I am not clearing my. throat constantly has not changed in almost 3 years.

Jump to this post

That is quite a regimen! How does the Netipot helps if the mucus is in your lungs?

I too have arthritis - pretty much everywhere - and find chair yoga with many bending poses as well the the good old "downward dog" to help move the mucus when walking hurts too much.
Have you been tested for CF genes, since even using so much saline the mucus remains thick?
Sue

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2 replies
miloandlisa | @miloandlisa | Jan 1, 2023
In reply to @raney "She responds promptly and orders meds, text, etc promptly My concern is the difference in the..." + (show)
@raney

She responds promptly and orders meds, text, etc promptly
My concern is the difference in the overall needs of each group
Peds vs geriatric. I think she may be fairly new because she is not pictured (listed) on the web site with all the other docs in the Pulmonary Specialty Clinic.
I am wondering if I am getting the best treatment. I am still spending 4 to 5 hours every day getting the mucus out of my lungs . Clear and very thick.. Sputum culture in Sept just showed the fungus that causes thrush

Jump to this post

4 to 5 hours every day? I've been to Denver and being treated at mayo currently; I've never heard of anybody taking that much time for airway clearance.

REPLY
Cathln | @Cathln | Jan 1, 2023
In reply to @raney "I live in Wilmington, NC and would really like to go to NJH for evaluations and..." + (show)
@raney

I live in Wilmington, NC and would really like to go to NJH for evaluations and treatment plan. I have not submitted an application because of travel concerns and need for airway clearance while traveling. I have copious amounts of mucus daily for the past 3 years.
I see a doctor at the Pulmonary Specialty clinic at UNC - Chapel Hill, NC approximately every 6 months She is very responsive to my questions and requests on "My Chart." However she is assigned to the Pediatric Unit about 1/2 of the time or more, so does not have that much availability. (Working with pediatric patients one week and then to working with geriatric patients the next week.)
I also see a pulmonologist in Wilmington (PRN) , however he said he did not want to manage the bronchiectasis and recommended, that I see him when needed and can't get an appointment with UNC-CH.

SO: MY QUESTION IS: How do you manage the trip to Denver from North Carolina with the need for airway clearance? (Fly? Drive?).

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I went in October We flew. I had o2 for the flight. Somewhere along the trip I developed a Pneumthorax! We were there 2 weeks, all testing was done. New meds given. Was told not to fly back because of collapsed lung. It healed in about month
Long ride from Dever to Albany NY, but Id do it again to see those doctors! My right lung has always been the worst. I am not being treated yet for MAC. But have great meds or broncheicstsis.Now, at home my o2 is up where it belongs.

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