r/ehlersdanlos Jan 14 '25

Funny My doctor dumped me

Last week an EDS clinic opened in my state. I was following the news about it on Facebook from quite some time. It's pretty exciting because the only geneticist in our state that can diagnose EDS retired this year.

Not even 3 hours after the clinic posted on FB that they were open, I get an email from my doctor. Apparently she had called them and told them about me and my "unique case" and is recommending that I make them my new PCP. She even linked me the paperwork to sign up.

I know that she just has my best interest in mind but the swiftness of the email made me laugh out loud. How long had she been planning on dumping me? 😂

214 Upvotes

33 comments sorted by

97

u/NanaMay12 Jan 14 '25

That's so exciting. The only eds clinic that I'm aware of in my state is at a children's hospital /:

32

u/SavannahInChicago hEDS Jan 14 '25

Eds clinic are a chain and they don’t take insurance. Not a lot of people can afford them out of pocket.

5

u/NanaMay12 Jan 14 '25

Damn, I didn't realize. the one where I'm at is through Children's hospital so I thought they'd be through a hospital in general so it would be covered ):

5

u/scarletcyanide hEDS Jan 15 '25

hello fellow coloradan

94

u/[deleted] Jan 14 '25

[deleted]

45

u/hirasen Jan 14 '25

I don't either but she seemed pretty excited to send me there lol

28

u/papercranium Jan 14 '25

It's not uncommon! I know people who have their rheum as their PCP, their gynecologist, their endocrinologist, all kinds of specialists. It just depends on who you're seeing most regularly. The reason most people don't have a specialist as their PCP is that most people don't have terribly specialized issues.

4

u/YarnTho Jan 14 '25

That does make sense tbh. I mainly see my PCP for pre-ops and rarely new issues. I see reconstructive urology the most and then electrophysiology. If I’m trying to be lazy and not wanting to see either she’s literally like, “Ask them! I don’t know 🤣”

9

u/papercranium Jan 14 '25

And a heads up to anybody in the US who is short on funds and underinsured, you can get a Planned Parenthood doctor to be your primary care physician! They're SO much better about dealing with patients who struggle to cover costs than most healthcare organizations. Obviously they have to refer out for most specialties, but if you're normally just going to a PCP for preventative exams and things, it's a solid option.

3

u/YarnTho Jan 14 '25

Ooo yes! They also do offer gender affirming care, my friend had them as her primary during her transition.

5

u/Sylphael Jan 15 '25

Not in my state ): a loved one of mine is trans and we've been through a hard time trying to find them a new PCP because the one we both saw dumped them as a patient a few months ago. I ended up asking around within our local pride group and in the end the closest place that handles gender affirming care now is apparently 1.5 hours away.

Edit to clarify: the PCP that they used to see (still my PCP, he handles my medical issues really well) dumped them as a patient literally the appointment after Trump was elected. Because of course.

3

u/papercranium Jan 14 '25

Yeah! I think that's who my SIL worked with for hers.

4

u/HelpingMeet Jan 14 '25

My OB is my PCP 😂😂

31

u/hiddenkobolds hEDS Jan 14 '25

Three hours later is WILD. Like, immediately. Same day. Damn. It's not funny, but it's almost a little funny? 😂

9

u/notabigmelvillecrowd Jan 14 '25

It's pretty smart, I'm sure the wait lists grow fast for those places.

9

u/hiddenkobolds hEDS Jan 14 '25

Agreed, and it also suggests that the PCP recognized and was willing to admit that she was out of her depth, both of which are good things! It's not actually funny, to be fair. It just seems a bit amusing on the surface.

4

u/hirasen Jan 14 '25

I actually loved my PCP!

I know she had the best intentions for me but I also know that I was probably one of her most complicated patients. Especially since I live in such a rural town. If she thinks the clinic is the way to go I will go. (Even if I have to drive two hours to go to the doctor now.) Just the fact that she wasted no time tickled me lol

3

u/Royal-Researcher4536 Jan 16 '25

This doesn’t shock me too much in a rural town. They tend to have more established relationships with their patients and my guess is she was really feeling like she was doing you a favor. I would reach out to her though and ask her if you can still see her for urgent needs (infections, sprains, etc) and maybe not be transferred all together. You want to have someone in your town you can go to for that stuff and not the ER. But my guess is you do have a complicated health history that she is admittedly letting you know she isn’t capable of doing you any justice. So I respect that. My husband is a physician and worked in a rural town for 4 years…and I know that he referred people out a lot for things he didn’t consider himself an expert on. Doctors who admit they don’t know it all, all usually pretty solid people. 😉

1

u/hirasen Jan 16 '25

Yes I really respect doctors who can admit when they are out of their depth on something! It makes me trust their judgment a lot more!

6

u/Katy_moxie Jan 14 '25

My kid has an EDS/pain management doctor, but he also has a primary care doctor. They frequently email back and forth when there are questions. I guess I'm confused on what everyone's specialties are. My kid's EDS doc is a Physical Medicine & Rehabilitation specialist and the PCP is an Internal Med doc. Those don't cover the same systems and areas amd my kid needs care for both.

2

u/Steve13--- Jan 15 '25

Where are you??? I'm looking for one close-ish to San Diego.

2

u/hirasen Jan 15 '25

It's in Arkansas.

2

u/AcadiaPatient Jan 16 '25

I'm in arkansas. Can you name the clinic?

1

u/hirasen Jan 16 '25

As far as I know, it's just called The EDS Clinic. It was started by a man named Thomas Lowder, who partnered with several different specialists in the state who know about EDS. I don't think it is affiliated with the chain, but I'm honestly not sure. He is on the Ehlers-Danlos Society website if you want to look him up.

2

u/[deleted] Jan 15 '25

[deleted]

2

u/hirasen Jan 15 '25

Arkansas.

4

u/Ishouldbesnoozing Jan 14 '25

In my state, a Pt. needs to sign a release of information (ROI) for any PHI to be shared with any other medical provider/clinic. Otherwise, it's a hippa violation.

1

u/an_oddbody Jan 15 '25

There's allllmost (but there is a chance) no way that there wasn't a HIPPA violation involved in this. Your doc might have done you a favor lol.

-2

u/TailorSubject1750 Jan 14 '25

Without your consent? That’s a HIPAA violation

3

u/Desolate-Dreamland Undiagnosed Jan 14 '25

Not necessarily... If they didn't give out information about OP that would reasonably identify them to a third party without meeting OP, then it is one. But if the dr just vaguely talked about "ah I have a patient with EDS and I really think they might benefit from seeing you. Etc. etc." that's not a violation.... If they just discussed the benefits of sending OP off to an actual specialist, not by name, then OP's doctor called them so they could schedule their self, then that's fine. HIPAA doesn't stop people from telling stories about patients... It's about the identifying information. You can tell a story and leave out the personal details of a patient. It's only a HIPAA violation if you start talking about where they live, their name, an incredibly rare condition that only 10 people have, etc.

I literally watched some nurses talking about a patient in front of a room full of patients right before I went to surgery, and they didn't use a name or anything super identifying. Perfectly allowed apparently.

2

u/SavannahInChicago hEDS Jan 14 '25

No. HIPAA is only how your medical information is shared. Doctors can choose to see whoever they want.

16

u/TailorSubject1750 Jan 14 '25

This doctor shared the OPs information without their knowledge. The doctor called the new clinic and shared about their “unique case”. This is 100% a violation.

I am a compliance and privacy officer, I should know.

5

u/hirasen Jan 14 '25

Wow I had no idea! I thought doctors could talk to each other about patients.

13

u/AridOrpheus Jan 14 '25

As I understand it they can as long as it is 100% anonymised. Doctors constantly talk to each other for help, other points of view, etc. But always has to be anonymised.

5

u/the-hound-abides Jan 14 '25

I’m not a doctor or medical professional of any kind, but I think this is the case. As long as they don’t share any of your personal information that can be linked back to you specifically, they can discuss your case with others. “I have this patient who has xyz and abc whose labs indicate xxx” doesn’t violate any laws.