Njh and ending meds

Posted by msk @msk, Aug 29, 2023

Hello
I need your thoughts on the following question. I am currently one month away from stopping the 3 meds(ethambutol, Azithromycin and chlofazamine). Njh prescribed the chlofazimine because rifampin was giving me drug induced lupus. I cant wait the meds are making sick. Fatigue and stomach issues are awful. I feel sick all the time. I went to njh in march of this year and had all the test. My reason for going was to see if they could tell me why i had bronchiectasis and mac. Results showed no immune disease and the lung damage due to radiation was probable cause .
I am supposed to return for my 6 mo review but i have thought about and its an expensive trip for 1 day. I dont want to ho back.I feel like i can have ct, sputum and my air way clearance here where i live. I have good doctors here.
Don’t know how njh will respond to this but would like to know if anyone has decided to not go back. Appreciate your thoughts. Miriam

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Tina Sims | @tinaesims | Aug 30, 2023

I went to NJ in April and I was scheduled to go back in August. I decided not to go back. My pulmonologist here is excellent and they did refer me to a University CF clinic. It took them over 2 months to do that. I was happy with my care there but the communication after my appointments was awful!
You talk to your ambassador and she could have cared less if I came back or not.

jjhseattle | @jjhseattle | Aug 30, 2023

Hello,
The folks at NJH are great for a comprehensive evaluation to establish baseline healthcare needs, diagnosis and to provide overall recommended treatment plan for my local doctors to follow. NJH has more updated information about pulmonary conditions that can be hard for local doctors to keep up with. They have access to a multitude of experts in the field all working together, which is difficult to assemble at home. I do not rely on them for my regular care, and my local doctors appreciate their perspective. I check in every 2 years to see how my pulmonary conditions are progressing, but would not go more frequently.
I would also agree with @tinaesims that the ambassadors are not as attentive to my needs, which is why have a local healthcare team is important.
Good luck.

Rick | @rstel7272 | Aug 30, 2023

After 4 years at my local hospital in Colorado, I went to NJH starting a year ago. After about 37 appointments and little value, along with a Dr with very poor communication skills, I have decided not to go back. I did my best to keep my local Doctors informed along the way as one of many issues with NJH is their record department. I hope to visit the Mayo in Jacksonville once hurricane season is over.