After being sick for so long, I finally have a name for my illness: Postural Orthostatic Tachycardia Syndrome, otherwise known as P.O.T.S.

A cardiac condition that's stripped me of my health, weight (causing me to drop to anorexic weight), self confidence, friends, jobs and continuing my education.

My goals are simple: gain weight, be healthier, and get out more. Basically, get my life back!

I'm also hoping to spread some awareness on this little known condition, and to highlight the struggles of the underweight and people with "invisible illnesses."

Wednesday, April 6, 2011

Cardiologist vs. POTS Specialist

As of today, I’ve seen both a cardiologist and a POTS specialist. Eventually, I will have to decide between them. Here’s a brief breakdown so far…


Cardiologist

Course of action:
  • wants to try Midodrine, bloodwork, another stress test and a heart echo.
Pros:
  • Seemed knowledgeable and caring. Listened to my concerns and actually believed me.
Cons:
  • Extremely long wait time/ office disorganized
  • Has yet to answer a phone call. I’ve called his office twice to ask questions, and haven’t had a call returned yet. On top of the wait time, I really don’t like this

POTS Specialist

Course of Action:
  • Wants to try Atenolol, use compression stockings, bloodwork and stomach emptying test for Gastroparesis (GP)
Pros:
  • She’s done a lot of research and clinical trials on POTS. She consults on drug side effects studies. She’s even been an expert witness on the topic.
  • was on time and prepared. (huge plus)
Cons:
  • None that I can see yet. Although I haven’t tried to call with a question or anything like that.

How I’m feeling so far:

I’m not entirely sure. I had high hopes for the cardiologist, but his office doesn’t return phone calls, nor is anyone ever in the office. I’m really angry about that. All I want to know is if I should get my testing done before I try the new meds. Yet they can’t return that call. It really upsets me because I should be able to get an answer on that. It totally undermines his credibility and my faith in him.

My only concern is that maybe something is wrong with my heart or cardiovascular system…and that, by walking away, I would never know. I hate to be a hypochondriac, but I’ve come this far and had so many tests already…I’m wondering if I should at least have the stress test/echo and find out.

What I’m debating doing is getting all the bloodwork done, then possibly having the stress test/echo done anyways, and the stomach emptying test. I can see how they all turn out, and then make my decision.

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