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Profile picture for linda1334 @linda1334

Hi Sue, I'm in OC, CA. There are a lot of pulmonologists here but I have to stick with those that would be covered by my insurance. So that limits choices to a certain degree. I do have some others on my insurance that I can consult but it's just hard to know if they specialize in MAC treatment as it doesn't generally say on their profiles when looking them up. To be fair, my pulmonologist suggested contacting NJH a couple of weeks ago after I told him that my new ID suggested watch and wait. He said they might prescribe another drug therapy that I could tolerate, but I'm not sure about that knowing all the typical drugs used to treat this disease as I'm already dealing with ototoxicity and neuropathy. I called NJH and I would need a referral approved by my insurance or I would have to pay $10s of thousands out of pocket according to their representative.

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Replies to "Hi Sue, I'm in OC, CA. There are a lot of pulmonologists here but I have..."

If I were in your position, I WOULD ask the doc to write a referral, citing the complexity of your case, the expertise of NJH, and the fact that after referral, he (or another local pulmo) would oversee your care with their assistance. It is absolutely worth a try!

@linda1334 I went to NJH self pay and while it wasn’t cheap, it did not cost $10s of thousands of dollars. Feel free to DM me if you would like to learn more about my experience as a self-pay patient at NJH.