I saw my gastroenterology doctor for my initial evaluation visit on the 26th, he sent me to a neurologist the next morning. The neurologist didn't find any issues but did theorize it might be behavioral and sent his notes back to the gastroenterologist maybe 20 minutes later.

After calling the gastroenterology department every single day since that afternoon, plus also sending multiple messages through the patient portal, each time saying I would be happy just to talk to a nurse, I was finally told today that the doctor I saw has been out since last week and will be gone until the ninth!

I asked if I could see someone else. No I couldn't.

Thank god I saw the neurologist after him, so at least I could call them and see if I could get a referral, but I’ve been waiting a week and no one told me until today!

So I wrote a very long and angry email to the patient advocate, although I did avoid the words ‘malpractice’ and ‘lawsuit,’ but I sure thought about it. Then I sent another message to the patient portal and called the neurologist to see if he could refer me to a behavioral specialist since he theorized it was behavioral. They don’t know if they can get me in by the end of the week.

We already extended our stay here until Friday. We were supposed to leave today. They told us expect 5-7 days (minus the weekend).

I've gotten no answers. A couple of theories, but that's it.

Why did I even bother coming? We had to drive 8 1/2 hours and my mom spent a bunch of money on this AirBnB. Now we'll have to drive 8 1/2 hours back and I may not even get the referral.

If they tell me I have to come back at some future date, as I feel right now, I'm going to tell them to get fucked.

This is supposed to be the top medical clinic in the country and I've been treated like shit.

I have no idea what to do now. I guess if they can't get me in, go home and hope there's a behavioral therapist worth a shit in Indiana that my insurance will accept and hope it really is a behavioral issue.

Just now as I was writing this, the nurse from the gastroenterologist got back to me. She said I'd have to wait until he got back on the ninth. Thanks a whole fucking lot for that.

Edit: Well since I wrote that, it's been a whirlwind.

A couple of hours ago, I got an extremely apologetic phone call from a different GI doctor who saw that I wrote a big, still cordial, but in my mind huge fuck you, to the nurse. He scheduled me for a blood panel right away, a meeting with the GI behavioral specialist tomorrow and is trying to get me into the ENT.

Apparently the original doctor didn't even take good notes, because this doctor wanted to send me to a dermatology clinic for pain and I had to explain to him that pain was never an issue, which greatly confused him.

Anyway, I got the apology that was warranted (although admittedly not from the right doctor) and even though it will mean staying the rest of the week, at least things are back on track.

My father was a very angry man and he died angry. The dementia didn't help, but he was very angry before the dementia. And I do not want to die like him, so I try not to get angry, but I hit my limit and actually lost my temper and it worked out for me for once.

I'm still not going to be an angry person, but maybe I won't be as polite as I used to be before either, at least not in a medical setting.

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[–] SgtAStrawberry@lemmy.world 24 points 7 months ago (1 children)

I just want to say I totally understand medical stuff taking forever and you just being told to wait for this, and then wait for that, and then wait for this thing, and then wait some more.

It absolutely sucks, but what to do about it.

I hope you get through it soon. I'm coming up on 4 years of going in circles and waiting.

[–] FlyingSquid@lemmy.world 17 points 7 months ago (1 children)

The waiting would have been fine if they had just told us. Especially since they told us 5-7 days originally. I mean I waited months for my appointment, so a little more waiting isn't really the issue, it's the total lack of response and then not even letting me know why until the beginning of the next week. That's not exactly what I would have expected from such a highly recommended hospital.

I mean honestly, I would have felt better about it if on that first day, he had just said, "well, we can't help you. You might as well just go home."

[–] SgtAStrawberry@lemmy.world 4 points 7 months ago (1 children)

I agree it would be a lot better if they just told you about how much waiting to be expected beforehand.

That they said 5-7 days and then just didn't, absolutely sucks. I do somewhat hope you just happened to be unfortunate enough and the doctor had some emergency that they needed to go away for. So that when you checked in it was supposed to be 5-7 days, but something happened and not that they said it knowing that the doctor was about to go on vacation.

If they did do the second option and I missed it I the text, then that sucks even more and you have my deepest sympathise about the situation. That should not happen on any hospital, let alone a highly rated one, especially where you are as it usually cost an absolute fortune.

[–] FlyingSquid@lemmy.world 4 points 7 months ago (1 children)

Thankfully, things have taken a turn for the better since I posted this initially. See my edit.

[–] SgtAStrawberry@lemmy.world 2 points 7 months ago (1 children)

I'm happy too hear that, never underestimate the power of a strongly worded letter. I hope it works out well for you.

[–] FlyingSquid@lemmy.world 1 points 7 months ago

I sure do too, thanks!

[–] WarmSoda@lemm.ee 19 points 7 months ago (1 children)

Frustrating as fuck. Everything medical moves slow and it always seems like your getting nowhere, until finally bam you're there.

Don't lose hope man. Somebody somewhere will figure it out. Breathe and let your patience understand everything medical takes forever. It's easy to get angry. But try to be calm.

Chin up brother.

[–] FlyingSquid@lemmy.world 10 points 7 months ago

I'm doing my best. Thanks.

[–] homesweethomeMrL@lemmy.world 12 points 7 months ago (1 children)

Ugh that sucks, I’m sorry. There’s not a good excuse for that. An excuse probably, but not a good one.

But maybe kickin it with mom in an airbnb is okay hopefully.

[–] FlyingSquid@lemmy.world 18 points 7 months ago

It is not. She's insane. But thank you.

[–] z00s@lemmy.world 10 points 7 months ago* (last edited 7 months ago) (1 children)

Dude I really feel your frustration on this one.

I've been a patient for many years due to chronic problems and I have learned that you have to advocate hard for yourself as a patient, even in the private system.

Doctors don't understand the patient experience, and they don't know (or sometimes care) that you had to drive interstate to see them. To them it's just a quick note to their secretary to book you in a week later. To you it's a week off work, a 9 hour drive, and money for accommodation etc.

Tell your story. Make them understand. Advocate. Repeatedly. Loudly. Continuously.

Ask questions and don't be satisfied with vague answers. Keep asking until you understand everything.

And treat them like they work for you, because they do.

[–] FlyingSquid@lemmy.world 5 points 7 months ago

Thank you. That's what I really had to come to accept on this trip.

[–] jeffw@lemmy.world 8 points 7 months ago (1 children)

So sorry to hear this after the good news you had shared earlier :(

[–] FlyingSquid@lemmy.world 5 points 7 months ago

Thanks. Me too. And now I have another excruciating wait until the neurology people get back to me. But I'm also trying to see what I can arrange back in Indiana based on the very little I've figured out about what's going on here.

[–] TORFdot0@lemmy.world 7 points 7 months ago

Hey I know how frustrating that can be not getting the care you need and having to wait around calling back constantly just trying to speak to someone.

I recently had a (somewhat) similar situation with trying to get my son’s hand casted with an ortho after he broke it on a Friday night.

I had to keep calling asking if his ortho had gotten the refer and could see him. It took until the 5th call before someone told me his Dr was gone on a military deployment and that’s why nobody had called me back on the referral.

In the meantime I called his pediatrician to get a referral to another clinic to get him care. It was Monday by 5pm before I was able to get him seen.

No where near the level of what you are going through, just wanted to offer some solidarity and the advice to just keep calling and advocating for yourself.

Eventually you will get someone who is willing and capable to help, even if, in the meantime, it feels like no one cares that you aren’t or someone you love isn’t getting the care that is needed.

[–] Melkath@kbin.social 6 points 7 months ago (1 children)

Did a local doctor say "you need the Mayo Clinic"?

I think Mayo clinic, and I think massive issue that needs urgent intense treatment, not behaviorial issue.

[–] FlyingSquid@lemmy.world 6 points 7 months ago (1 children)

Not eating for seven months is a massive issue that needs treatment. And yes, he did.

[–] Melkath@kbin.social 5 points 7 months ago (1 children)

Okay, cool, that deet wasn't in the post so I was curious.

Sounds like things might be turning around, hope you get the the help you need and a speedy recovery.

[–] FlyingSquid@lemmy.world 3 points 7 months ago (1 children)

Sorry, this is like update 10 of a series of updates people have asked me to post on this. I originally linked to the previous updates, but there have been too many to do that to now.

[–] WarmSoda@lemm.ee 2 points 7 months ago (1 children)

Just saw the edit. That's good! Very good. Things are moving. Rest easy tonight

[–] FlyingSquid@lemmy.world 1 points 7 months ago (1 children)

I'll try. I'm still super anxious. I know I shouldn't be anymore, but this has been a super stressful time.

Thanks though.

[–] WarmSoda@lemm.ee 2 points 7 months ago (1 children)

That's 100% natural to feel like that. You're completely fine. Tomorrow will come regardless of what your head is worried about.

[–] FlyingSquid@lemmy.world 2 points 7 months ago

Thank you.

[–] JayleneSlide@lemmy.world 6 points 7 months ago* (last edited 7 months ago) (1 children)

Squid, my deepest empathy for your medical journey ain't worth shit, but you have my empathy regardless. Without boring anyone with unrelated detail: I've been there. Kudos for your self-advocacy.

So I wrote a very long and angry email to the patient advocate

This right here, everyone. This person's entire role is to cut through red tape. In my experience, the patient advocate is the Winston Wolf of their hospital departments.

As an aside, Flying Squid, I always appreciate your contributions to the Lemmy community, even when I disagree. Thank you for being you.

[–] FlyingSquid@lemmy.world 2 points 7 months ago

Thank you very much, that's very kind of you!

[–] Addition1291@lemmy.world 5 points 7 months ago (1 children)

I've been following your journey with this and I feel for you. I have mystery GI problems too (not as bad though) and my experience is that it's nigh impossible to get a proper diagnosis for GI things because they all have the same batch of symptoms.

They threw the book at me, full colonoscopy, CAT scans, blood work, stool tests, etc. More than a year and $4000+ later the best I got was "Idk bro, good luck".

I wound up doing an elimination diet on my own and found what foods trigger my issues. No real diagnosis beyond blanket IBS though.

Hope you find your answers.

[–] FlyingSquid@lemmy.world 4 points 7 months ago

I'm glad you found a way through it. I hope so too. But there is good news, as you will see in the edit I'm about to make.

[–] klemptor@startrek.website 4 points 7 months ago (1 children)

Dude I'm so sorry to hear this. I'm glad you advocated for yourself and are getting some attention now, though it shouldn't have to be necessary. They should not have left you hanging. Here's hoping that the new GI doc & behavioralist can help you!

[–] FlyingSquid@lemmy.world 5 points 7 months ago

Thanks!

[–] PlasticExistence@lemmy.world 3 points 7 months ago* (last edited 7 months ago)

That's so highly disappointing, but unfortunately not surprising to me given how often doctors have been arrogantly wrong about my issues.

I'm sorry, my dude. I wish it would have worked out better for you. Maybe it still will with more time, but I know that's cold comfort right now.

[–] Lumelore@lemmy.blahaj.zone 2 points 7 months ago

Yeah mayo has fallen off hard. Like pretty much any other hospital in America, they only care about making money but they can easily get away with shit since they have prestige from long ago. You really shouldn't have had to wait anywhere near that long to hear from them. I imagine that they are probably understaffed especially since mayo (like many other hospitals) treat their staff like shit.

I have a lot of family that work in healthcare and a lot of hospitals seem to be a dumpster fire behind the scenes and are horribly mismanaged. The exception to this seems to be smaller hospitals/clinics that haven't gotten bought out yet.

Sorry you had to deal with that. Also I saw your post about potentially leaving lemmy and I have to say that I do like your posts. I think the mean people are a lemmy.world issue since they are so big they are like a troll magnet.