Kaiser and referrals out of network

I also have Kaiser and no they will not cover a second opinion out of network. I feel I have a pretty good pulmonologist and ID at Kaiser Eureka in Roseville, CA.

I have been nebulizing 3% saline for about 8 years. I also have MAI and currently are waiting and watching on taking the antibiotics by my choice.

Hi,
I also have Kaiser. My PCP failed to thoroughly read a CT report in 2019 with BE clearly diagnosed. I didn’t get diagnosed again until 2023. I filed a grievance and requested outside referral and they authorized UCSF. I’ve talked to her 5-6 times. I just keep messaging her and asking for another referral. My pulmonologist at Kaiser works with me. That may be the difference.
Where are you getting care now?

Chris,

This is the greatest help I have received so far! Big thanks! I am in limbo right now having been so betrayed by my pulmonologist who made the same error as your PCP! Amazing similarities in our stories. Would you be willing to talk to me? I will dm you now.

Much gratitude,

Aida

Hi Chris,

I tried to pm you but the send field would not accept your @chris 1321 address.

I would appreciate talking to you for just a few minutes about Kaiser.

Many thanks in advance.

Aida del Valle

Hello @paxmundi,

I removed your phone number from your post as Mayo Clinic Connect is a public website and we want to protect our members' privacy from potential bad actors.

To private message a member, you can click on their username to go to their profile. Then, under the profile picture you should see "send private message." If you click on that within a member's profile, it will send to the correct member.

Thank you, Justin. I tried it but it didn’t work. I must be doing something wrong and will try again. Aida

Hi Justin, I just tried again and there’s nothing under the person’s profile pic that says “send private message”. I tried copying their @name, clicking on the little envelope, composed the message, and when I entered the name to send I got a message back saying it was incorrect.

Hi Chris,

I couldn’t send you a direct message. I tried leaving my number here but it was removed. If you are willing to talk, can you please message me so I can provide my number? I am unclear above as to who is the person you emailed five times. Like you, BE appeared clearly on a CT scan in 2019 and my pulmonologist failed to inform me both in a personal visit and in a follow up email telling me there was nothing to be concerned about, just some scarring. Later, as I worsened, I would send him emails asking if there is anything I could do about this “scarring” he still failed to mention it. In 2021 he mentioned trying respiratory therapy but with no mention of BE. It was only like you, in 2023 when I started having bleeding episodes that the word came up. I trusted this doc b/c I had a massive hemoptysis in 2013 and he led the team that saved my life though he did not perform the life-saving procedure. When I started waking up to the fact that he had been negligent in my care for that and other reasons, I looked at the written report of my massive hemoptysis in 2013 (which I had ordered back then) and saw that BE was listed there as well! He also made light of MAC in a cursory email, and didn’t even mention the Nocardia findings g that was also on the sputum report, nor ask for a follow up sample (which I provided anyway). He has refused to refer me to UCSF in spite of my history with hemoptysis, a history of serious TB as a college student, my worsening condition, and his sloppy care. I am going to definitely file a grievance and wanted to contact you for any pointers on being successful with that. I am in San Rafael Kaiser. It would be so appreciated.

UCSF is a center of excellence for bronchiactasis/NTM. I hope folks can get referrals there. I am being seen there for my idiopathic emphysema and have received excellent care.