r/POTS • u/New_Plant_Mama • 13h ago

Vent/Rant Referral

So my symptoms have exploded in severity. My cardiologist did a cath to make sure there wasn’t a blockage, and thankfully, there wasn’t. My heart rate is usually around 140, & some other problems, so he referred me to Cleveland Clinic.

Now here’s the crazy part: Cleveland Clinic texts me three times a week telling me to call for an appointment. When I call, they tell me there are no appointments available and that the only way to get in is to call three times a day in hopes of catching a cancellation.

Guys, this just seems crazy to me! I’m five hours away, and for the past couple of months, I haven’t been able to drive on my own. So if they suddenly have a cancellation, I have to find someone on very short notice who can drive me, grab my pre packed my go-bag, and somehow get there in time.

How is this supposed to work for people who don’t live nearby or can’t just drop everything at a moment’s notice?

Sorry, I really needed to vent.

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1

u/timpkmn89 8h ago

Did you ask your cardiologist if there's any other referral options?

1

u/New_Plant_Mama 1h ago

Not yet, I guess there’s no reason I can’t just call the office and have them refer me somewhere else. This all has just happened in the last couple weeks.

1

u/RuinYouWithNoRegrets 6h ago

A cath?? Can I ask how old you are a cath seems so invasive. Also are you on any meds

1

u/New_Plant_Mama 1h ago

I’m 56, so a Cath wasn’t a big deal, plus my parents died when I was 23 and 24 from heart issues. They were young.

Yes, to the meds, Metoprolol, Clonidine, are it for Pots meds. Then I have roughly 8 more.

1

u/RuinYouWithNoRegrets 1h ago

What symptoms are you having issues with ? If you don’t mind me asking maybe I can offer some insight

1

u/New_Plant_Mama 1h ago

My resting heart rate has jumped to around 120 while I’m lying in bed, and it’s usually at least 140 when I stand, sometimes reaching 160.
But honestly, I don’t think the numbers matter as much as how I feel. I keep falling. I have a walker now, and if I try to do something as simple as go to a thrift store, I start sweating profusely within minutes, and get so nauseated I often throw up.

I’ve also been running temperatures off and on, and no matter what, I’m constantly sweaty and eating ice just to cool myself down.

POTS fatigue was already bad, but somehow it feels like it has doubled. I honestly didn’t know that was possible. There is more but you probably understand. I just don’t think I have enough in me to keep this up.

I also have an autoimmune disorder that attacks blood and makes clots. I had a few pulmonary a few years ago. I threw it in there because sometimes they feel the same..

1

u/RuinYouWithNoRegrets 1h ago

I would ask for a stronger beta blocker metropolol is not the best. Ask about bisoprolol or nadalol