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

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.

@chris1321 very interesting … a few questions if you would be open to answering:
1) with your care at UCSF, are they also doing your imaging, sputum samples, etc., or is that workup still done at Kaiser and the UCSF visits are doctor-only office visits and UCSF relies on your Kaiser workup testing/imaging (I think you previously mentioned you see and like Dr Zha at UCSF.
2) Are you being treated for BE only or do you also have NTM?
3) If the UCSF doctor says I want to do XYZ test or prescribes a certain medication or wants you to see another specialty, does that all get done at UCSF or does it go back to Kaiser and does Kaiser automatically approve whatever UCSF orders as part of Kaiser’s referral?
4) Do you see a respiratory therapist at UCSF?
5) Regarding paxmundi’s question about who you have spoken to 5-6 times, I am assuming from your post that you mean the UCSF doctor and whenever you need to speak with her you reach out to your Kaiser pulmonologist for the referral. Is that right?