Kaiser and referrals out of network

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?

@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?

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.

Aida,
I believe you can send me a private message since I edited my profile. I don’t have your number & I was unable to private message you. Perhaps your profile also needs editing. I’m happy to connect with you.

Happy to elaborate.
1) Kaiser does all the tests: CTs, sputums, genetic etc. I communicate with Dr. Zha, a NP on the team, the pharmacist, possibly RT (haven’t gotten to him yet). Basically I just set up appts and tell my pulmonologist at Kaiser if I need a new referral or not. I am concerned about sputums as Kaiser SR does not automatically do susceptibility testing. And, I seem to have to prompt my pulmonologist to call it in. If any treatment is planned, we must know what’s going to work.
2) I’ve got BE, MAC/NTM, & colonized pseudomonas aerunginosa. I had a bilobectomy 5/3/23, RML & RLL.
3) Any prescription or specialty referral is at Kaiser. I’ve had Dr. Zha prescribe 2 different inhalers & an antibiotic. Kaiser filled them. My pulmonologist just followed her order.
4) RT is in the works. Kaiser has a pulmonary rehab program in Novato I’ve never used. RT at Kaiser SR is responsive but not a subspecialist in BE/NTM.
5) Sorry for the misunderstanding. If I have a question, I often message both pulmonologists, UCSF & Kaiser. Sometimes just UCSF if Dr. Zha is leading the treatment plan. For instance, I was treated with Azith/Etham/Rifampin for MAC 9/23-12/24. I cleared 1/24 and remained clear until 11/24 & again 1/25. I stopped all 3 and will be starting Azith/Etham/Amikacin per Dr Zha dosaging and plan.
I’ve only been talking telemedicine with Dr Zha about this. See kaiser pulmonologist in a week or so to bring him on board.
6) It’s tricky. Trying to keep both pulmonologists aware of plan & clear they are both treating me. Not an ideal setup for sure.

@chris1321 thank you for elaborating. Would you indulge me a few more questions regarding your treatment:
1) Was your bilobectomy done at Kaiser or UCSF?
2) If you cleared in 1/24, and remained clear through 1/25, did you just recently have another sample come back positive for MAC/NTM? I assume so since you are starting treatment again.
3) the Amikacin you are going to start soon, is that IV or Arikayce?
4) Do you know Dr Zha’s thinking for dropping the rifampin for this next round of treatment?

Sure.
1) surgery was Kaiser Oakland. Surgeon Jeff Vellota.
2) Cleared 1/24 & started having positives 11/24 & again 1/25.
3) Arikayce. Dr Zha preferred direct delivery to lungs for me.
4) No but I will ask this. However there is a clinical trial looking at 2 meds vs 3 meds for MAC tx. The 2 meds exclude Rifampin. My readings revealed Rifampin is not well studied for MAC, rather for TB. I’ve also heard this from David Griffith? (NJH) I believe. Could have been another BE/NTM specialist. Rifampin was my least favorite of the meds. Made my teeth all stained red-brown. Seemed to have the most GI symptoms with this also.
Hope this helps. Lots more of my story if you have any other questions. I’m a dietitian; worked in ID/HIV/AIDS for 15 years. Probably got BE & MAC from overseas travel & untreated pneumonia but idiopathic since we don’t have images from then.
If you can get into UCSF, go.

@chris1321 thanks so much for the additional info. I would really appreciate hearing more of your story. I tried to private message you to give you my phone number but like paxmundi, the system is not allowing me to private message you. Paxmundi and I had a wonderful conversation yesterday, perhaps the three of us could have a conference call? Maybe you could private message me? I don’t know if you have been able to private message paxmundi yet but she has my phone number. One way or another, I hope we can connect!

@chris1321 thanks so much for the additional info. I would really appreciate hearing more of your story. I tried to private message you to give you my phone number but like paxmundi, the system is not allowing me to private message you. Paxmundi and I had a wonderful conversation yesterday, perhaps the three of us could have a conference call? Maybe you could private message me? I don’t know if you have been able to private message paxmundi yet but she has my phone number. One way or another, I hope we can connect!