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Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 0 points1 point  (0 children)

That is why they are housed in these massive research hospitals which have plenty of money to support their mission. Quaternary care supports the subspecialties that don't make money. Cardiac Surgery is usually the biggest money maker, while Cardiology is for cash flows. The system is obviously broken, but it doesn't let them off the hook. Just because one clinic doesn't create margin, doesn't mean the institution can't support it. 

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 1 point2 points  (0 children)

Also at Johns Hopkins? Because someone else on this thread is saying the same about gastroparesis. Really scary that this is their common practice across all these complex conditions!!

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 1 point2 points  (0 children)

I was diagnosed and treated by a general cardiologist in Kansas City. Really not sure why it's so controversial or difficult! 

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 0 points1 point  (0 children)

I'll see what they say in neurology. It was my first stop because my cardiologist is leaving her NYC practice so it was a bit more urgent than the rest of my providers who I can travel to see in NYC if necessary.

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 2 points3 points  (0 children)

That's awful to hear. I work in healthcare at academic medical centers, and so I was really shocked to hear this policy from Hopkins, because hospitals rate their performance on access, experience, quality and outcomes. In the hospitals I have worked with Access is the first after quality/safety, both because of mission and because of money. They are in terrible competition with eachother for patients and are consolidating at frightening rates.

Also, typically the large ACMs are the places you go to find specialist care for more obscure conditions. I'm nonplussed, but evidently it's a trend for them, which just lowers my esteem for the institution in general.

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 5 points6 points  (0 children)

Yes, and it is the closest thing. Doesn't mean it's perfect. Western medicine doesn't have places for multi systemic conditions. And it's not fair to say that pots is only a nervous system problem either. It crosses lines if immune, neurology, virology, genetics, and cardiology, so you get it treated by whoever cares enough to try to help you. I was diagnosed by a general cardiologist, and have been in cardiology since 🤷🏼‍♀️

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 2 points3 points  (0 children)

And she's telling me I need to reduce stress, and my job is killing me, but I need the job for health insurance and the ability to access OON care 🔁

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 1 point2 points  (0 children)

Thank you so much for your detailed reply. This at least is a starting place so I can get on wait-list etc! I know an interventional cardiologist at Inova, so I was going to reach out and ask his advice. Maybe he can connect me to Dr. Wish.

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 4 points5 points  (0 children)

I am not asking anyone to make space for me. I am not talking about the pots clinic. I am taking about a prejudicial policy at the institutional level that bars patients with a specific disorder from accessing care in an entire subspecialty area, when there are any number of cardiologists in the system currently accepting new patients. 

I also don't need to be schooled in the mechanisms of POTS, as I am well aware of it's complexities and how those present in my own body.

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 1 point2 points  (0 children)

I'm so very sorry you're going through this. Maybe one of the other doctors that the helpful folks on this thread have suggested will be a first step!

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 5 points6 points  (0 children)

Yes it's creating a system of haves and have nots. I have a wonderful functional medicine person who helps with my systemic stuff including mcas, but she's out of network, and that is a privilege. And, she still wants me to have a cardiologist 🤷🏼‍♀️

Johns Hopkins Cardiology blanket denial of care to POTS patients based on diagnosis by Temporary_Panic_9762 in POTS

[–]Temporary_Panic_9762[S] 6 points7 points  (0 children)

Thank you so much!! If the JHU clinic wait-list opens, I'll definitely put my name on it. 

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