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.
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
I had to wait 6 months to get an appointment at National Jewish. I was out in Denver for about 1 week to go through the battery of tests they require. It's well worth it. The top 2 or 3 experts in MAC are at National Jewish. These are very same experts who head the committees in charge of establishing MAC treatment guidelines. So if you can see the top MAC docs in the US (I would argue not just the US, but the world), take advantage of the opportunity.
Did you start taking the Big 3 before you went to NJH or waited until you saw them to find out their treatment plan? I really appreciate your experience.
How are you tolerating ARYKASE? Are u still on 3 med ?
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?).
I live in NC and see Dr Mary Leigh Ann Daniels at UNC and she is an expert in Bronchiectasis and MAC. I would highly recommend her to anyone. I have also been to National Jewish twice and have seen both Dr Huitt and Dr Griffith. Save yourself the trip to Denver you won't be disappointed.
I am still on the 3 meds. Started arikayce one month ago. Had to stop for a week due to loosing my voice. Began again 3 times a week vs 7 days. Its better. I do get side effects- fatigue, coughing-mild, some hoarseness and joint pain.
This med is very expensive and i did not meet the threshold for the copay program. With my doctor we decided to do 1 more month. Will see what njh says when i go in march.
I go to UNC as well. My local pulmonologist had first referred me to Dr. Daniels but I couldn’t get an appointment with her for six months or more when initially diagnosed. I am now seeing one of the colleagues at the same location, Dr. Patel. However, I think his expertise is Bronchiectasis.
I have an appointment in February to see if I have obtained clearance after six months of meds. I’m going to wait till after that appointment to make a decision about a doctor change, I guess. If I’ve made clearance and I just continue on the medication and it worked, then it won’t matter. However, if I don’t clear it, then I would like someone that is more specialized in the field of MAC lung disease.
Thank you so much for replying to my post and the advice!
Happy New Year! Dee
It is next step for me and I am very fearful of cost and side effects. I see new pulmonologist on Jan 10
I take a trial drug( clofazamine )vs Rifampin which I am allergic to Have had to stop twice since October due to Pseudomonas and recently pneumonia and influenza A to switch antibiotics Hoping Arykace will be the answer as it treats both MAC and pseudomonas Thank you for your reply
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.
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.