how to talk to cardio during follow up?

First of all, I'm new here and want to say I'm grateful to the point of tears for the help I've received. Thank you to those who read and reply everything has helped.

I am very disappointed with my cardiologist whom I see tomorrow for my first real follow up with the MD who placed he pacemaker. Granted he'd ordered some tests but the lack of communication from his office created a loss of trust I felt so extremely alone and isolated in this storm.

I've been to the ER twice since a full cardiac block (from what I understand happened to me, the cardio didn't explain it people on the crash team who revived me did) After the pacer I showed up in the ER with the EKG showing a heart drop of 36 despite the pacer.

The doc on call tried to reach my cardio for 2 days and he wouldn't return calls, because it was his weekend off. his associate didn't want to advise on a pacer he didn't place. Ultimately the pacer tech said "the pacer is fine, no problems" while the hospitalist offered me anti-anxiety meds. I was outraged. It wasn't anxiety the crash team that worked with me a second time were arguing with the pacer guy that what they saw was real. He tried to convince them the hospital EKG was broken, the guy who revived me said I took her bp and pulse manually and I saw what I saw. I could have kissed him.

I don't want some tech who has a machine to defend telling the hospital doc nothing happened to me when I had another syncope episode.

He told them to ignore the hospital EKG because the pacer would be right and theirs would be wrong This horrified me. All of it has convinced me I don't want to be in this small town any longer. I'm looking at moving to Dallas soon where cardiologists abound and I have some choice in my care

All of this to say, follow up so far hasn't happened despite two subsequent hospitalizations complaining of the same symptoms that got the pacemaker placed in the first place. I have little hope for tomorrow's visit.

I'll be really surprised if I get some answers tomorrow about the extreme fatigue and continuing symptoms post pacer. And I'm almost hopeless about even attempting to talk to him, the other cardio I met here was even less impressive. Has anyone else moved to get better care?

4 Comments

Your own advocate

by Theknotguy - 2014-04-01 11:04:14

Unfortunately with medical issues you have to become your own advocate. Or, if you can't be your own advocate, get someone who can.

I think we all have horror stories about medical care. I know I do but won't bore you with details about mine. Suffice to say, they almost killed me.

In the United States you can change doctors for any reason at any time. No reasons given, no questions asked. Or, if they do ask, tell them what you want.

You can contact your medical insurance company, ask them who are qualified doctors in your area. They'll give you a list. Then you can go doctor shopping.

Quite a few of the insurance companies have a nurses' hotline. You can contact them and find out what records you can request from your current doctor. They have to release those records to you - by law. So you are not out of line asking for them and can really cause problems for them if they don't release them.

I won't get into your details - suffice to say they're bad.
While your doctor is probably right, with the pacemaker your heart rate couldn't have dropped to 36 - if the PM was working correctly. The next question is what really happened?

But, if you aren't getting good touchy-feely feelings from him, it's time to head out the door. I haven't got time to wait on a doctor who's more concerned with his image than keeping me alive.

I hope you can find someone who is more concerned about you than his personal agenda. Hope you start feeling better. If you move to Ohio, I can offer quite a few suggestions.

Hope this helps.

Theknotguy

Moved for better care

by pacerpostergal - 2014-04-02 02:04:05

You betcha! After living with pacers for over 40 years and being very in tune with signs and symptoms of both routine generator end of life and pacer malfunction, I drove myself and my dog from Massachusetts to California in 7 days to have my former EP specialist perform my routine surgery 4 months later. You do what you have to do, and don't look back. It's your body, your life.

Best to you,

Karly

comments so helpful thanks

by divergent1 - 2014-04-02 04:04:36

This website where I can ask the questions not getting answered in the medical world is the most helpful thing I've ever experience in dealing with a health issue. I get a variety of answers all of which have something crucial that I need. I'm glad to hear a person can drive from one in of the country to the other to get the help they need! advocacy is the name of the game.

Cardiologist was friendly enough but I realized that beyond a beating heart quality of life means nothing That I'm so exhausted I cannot remain upright more than 2 hours is not normal. His response when I asked "I can see you are trouble, its not like you had a heart attack" I saw his patients a room full of 70-80 year olds that I suppose having a beating heart at all is good enough

But I'm not that old and the quality of life I'm left with is not acceptable, it wouldn't be acceptable if I was 80 its not acceptable at 58.

His glib, joking manner derailed me and I realized I left there with no questions answered just some humor laden small talk that didn't address a single question, except 1. My decision to get out of his practice and out of this town was absolutely confirmed. So in away it was a real gain.

change docs is good option

by cb - 2014-04-21 05:04:47

After I got my PM last year I had a short period of shock ...then needed answers. Docs said I should be "better then before" did not understand that I was still not "good" and I could not figure out WHY. So I changed my cardiologist. The new one is endowed with the ability to explain what is going on with my body and I dont feel like an idiot anymore. Also, it was the new doc who explained that my PM was working on my atrium as well as the ventricles...why could not the other guy have said that....?Anyway, if a doctor makes you feel foolish or does not take your concerns seriously, get a new one! If you are in the SF bay area I could tell you mine...

You know you're wired when...

Friends call you the bionic woman.

Member Quotes

I had a pacemaker when I was 11. I never once thought I wasn't a 'normal kid' nor was I ever treated differently because of it. I could do everything all my friends were doing; I just happened to have a battery attached to my heart to help it work.