what can be done

Is there anybody out there who might know of a web site,person or persons in the medical field who is willing to give straight answers to our questions. Reading about so many people haveing problems (including myself) is very disturbing.This web site is a great tool for knowledge and support but the companies making our devices and the doctors putting them in need to help us way more than they are. strting from the bedside before placing a pm . Too many of us around the world are suffering amongst ourselves and we need a voice to be heard load and clear. We need help and answers. We got our devices to make our quality of life better some of us just even so we could survive. If any one would like to help me research this and try to not only find answer for ourselves but for the pt in the future.I don't know feeling the way I am now if I would have gotten my pm although I was at the end of any medcation working for me. I had sustained afib,flutter and svt, a av node ablation and binvent. pm put in, I know not being able to catch my breath, palps, dizziness,nausea and pain radiating between my shoulder blades is not normal. It was not normal to begin with and thats why I ended up with a pm so I could have some quality of life and get back to work so why are we all not feeling better? Besides the "it takes time to heal and give yourself more time" does anyone have any other ideas to share?

thanks

6 Comments

time to step up

by sistermary7 - 2008-02-23 09:02:04

The only thing I know to do is to start by asking any of the on line med prof. (such as me , believe it or not I am a cardiac rn) to start asking questions and putting some pressure on the docs that we work with everyday to look into this problem. The US and Canada have a national nureses assoc. this could be a great topic to present to both countries. sometimes when issues like this get brought up the nurses assoc. can make a few more waves . I think what I would like to do is post a letter to any other med persons out there who are either a pt or has a family member who is and having problems to contact me to help me get to the right people. networking really helps. I would like to get a list made of all the common complaints and some not so common and start to address this issues even with my own ep. I refuse to give in. I am not trying to toot my own horn but that is why I have the respect I do from the doc.s I work with. They know I am stubborn and won't let something go even if it does tick them off. Usually they thank me later. Well now I am the pt and I need help and so do obviously lots of others just like you. maybe you can start by asking any nurses you know in your country how to go about getting an important issue to the forward in their assoc. Karen I hope we can stay in touch and post letters to encourage others to step in and help us . maybe together as a collective voice the docs and companies will have to listen and help,.thanks!
mary freyre

forum run by an EP

by barbwil - 2008-02-23 10:02:17

http://forums.about.com/n/pfx/forum.aspx?nav=start&webtag=ab-heartdisease

This is a heart forum moderated by Dr Richard Fogoros, an EP physician who no longer practices but is very active in trying to upgrade the medical establishment. He will answer any questions but will not give a diagnosis on line. He also has a blog. He's very good in the straight answers dept.

Dr Rich

by barbwil - 2008-02-23 10:02:49

http://heartdisease.about.com/

I thought I had better give you the main site in case the other one wouldn't let you get to the forum until you joined. He does have a section on pacers and ICDs.

normsw

by normsw - 2008-02-24 04:02:55

Maybe I've been lucky, but I've found that by being very proactive about my own body and its parts and persisting in getting answers (even second opinions if necessary), that my primary and also cardiologists (once they realize I'm determined to get answers), have been more upfront and informative with me regarding my pm and heart performance issues.
Doctors are not God, but some of them act like they think they are. I don't let them talk down to me or evade the issue with any of my questions.
Basically I try to talk with them as to my brother or a friend, and I do eventually get my answers. This works well with the pm techs also; they've been helpful and very knowledgeable about the device..

Issues with no answers

by axg9504 - 2008-02-24 08:02:41

If you look through some of the heart forums (as in Cleveland) most people are troubled with electrical problems that are benign. Maybe it's because these are benign that as much research effort has not been devoted to them. EP problems that are not consistent are hard to track down. What can you do, other than to try to mediate an errant electrical pathway by ablation or prescribe drugs to try to control it? I am in week 7 now, I'm taking a Bblocker, I dreaded it too which is why I put off getting a PM but it turned out to be OK. I have some palps several times a day but I used to have that before my PM too and I try not to pay attention to them.

Regarding docs. I can echo some of Turboz's comments. My first EP was a stuttering uncommunicative idiot (in my opinion). His answer to my statement that my Omron BP monitor was showing lowered heart rates during exercise was "I don't trust those devices". When he incorrectly diagnosed afib he prescribed Toprol XL with relish. When I said I didn't like to take drugs he said unsympathetically "Well you're gonna have to learn". When it didn't work and I called the clinic for answers, no one called back. Luckily my interventional cardio was able to direct me to the proper resources.

I would say, try to stay informed about other's experiences and anything you can find on the internet. Pay attention to how your doc comes to conclusions and question them. For example, when I went back to the same clinic I mentioned above to see another doc. he first started out by telling me that I had a 'nuisance' condition (he was sticking to the afib diagnosis) and that I could try something like sotalol (sp?) which was short acting. Then just before I was about to leave he came up with the idea of taking coumadin because he suddently discovered on my history that I had a TIA 13 years ago. That was a clue that he didn't spend anytime thinking about my case before I got there. I said I'll take the Coumadin at my interventional cardio and when I got back to my home town. When I consulted with my cardio, he thought it was unnecessary. And so did the other two EP's I consulted after that. I wound up with a PM implant at one of the nationally well known heart clinics in this area, one that does a lot of procedures and so far it's been a success. But then my situation is probably not complicated (sorry for long post)

General issues

by turboz24 - 2008-02-24 12:02:23

I would say that I find generally not only doctors, but seems like a lot of people in every field really don't seem to want to put forth a lot of effort. My first EP I'm sure was a decent doctor, but when it came to answering any issues and giving all the information possible, he didn't do a good job.

First with my initial ICD implantation, I was given no choices on implant location, etc. When I talked to him after my procedure, he didn't tell me anything straight about why he couldn't ablate my issue. Once I was swapped to Sotalol, I had to discover for myself why I my heart was beating with less strength, why I had some reactions to the medication. When I told him that I told him I used to be high energy, but now I just felt like dragging all the time he said "Welcome to what most people feel like.". Even if that was a joke, it's not really a time to joke and not in the least funny.

It was't until I swapped doctors that I finally confirmed what the medications were doing to me and I finally learned specifically where my vtach was coming from and when I told this doc that I disliked the medication and how it effected me, he had no issues with going in to fix the issue and try to get me off the meds. He was very straight forward, etc.

I would have had no issues if my first doctor had simply told me that he didn't think he had the sufficient skill or time (since I had been in the o.r. until late in the evening) to successfully perform the procedure. I would have said "Fine, let's find someone who can."

Since I haven't had any medical issues until now, I never considered that you basically have to shop for a doctor who fits what you are looking for.

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