Jewish hospital appt
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
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Thank you. That is they way I would have to travel.
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
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
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
Thank you. That is helpful info and the only way I could go.
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.
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
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
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.
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.