Need some advice

First, some history.  I had my first pacemaker in 2012, a single lead pacemaker.  It was replaced by a dual lead pacemaker with a defib on the advice of my cardiologist, and I have had it until now, at age 85.

Prior to having any pacemaker, I was walking 1.5 miles a day, 7 days a week w/o difficulty.  This deteriorated until now where I am out of breath after 50 feet.  I questioned my original cardiologist about this shortly after getting the second implant, and he had an adjustment made. I was able to resume longer (300 foot) walks easily; for two days.  I reverted to the out of breath situation, much to my dismay.  The cardiologist said he had not made any change in settings, and the experience was due to the placebo effect.  I believe in the placebo effect, so this was a possibility, but I could not justify why it went away after two days.  

I had previous issues with this cardiologist; the second implant I had was $1100 higher than the first one.  Found the reason was it was filed as a clinical trial, but this was denied by the cardiologist and others.  After a year of trying, I gave up, not willing to get legal help.  I changed cardiologists at this point.  

My new cardiologist has made some change in the maximum allowable rate (which had minor effect), but nothing NEARLY as effective as the "placebo change".  

My questions are: "What am I missing?  What options do I need to try?  Is my current cardiologist's explanation it is due to my age the entire answer?"

I thank anyone with suggestions!

6 Comments

You Are Trapped in B.B.B

by LKC32 - 2017-05-06 19:21:23

Thanks, Robin1.  I agree with your comments - elderly people are treated like infants by some.  I have considered changing doctors, but in Lower Alabama it is hard to be too choosey - it has to be one accepted by your insurer, one who will accept new patients, etc, etc.  

I do like this doctor, I guess I just do not know what to ask for.  What I DO know is something is just not the best it could be.  

Back to basics

by Gotrhythm - 2017-05-07 14:24:15

When you have a pacemaker, it's easy to blame every symptom on it. But the pacemaker is working with a heart, a living thing, which by definition is changing all the time.

As I read your post I have several questions. If you were able to walk 1.5 miles a day (in the Alabama heat!) without difficulty, what condition led to getting a pacemaker? And why, in less than five years, was it replaced with a dual lead defibrillator? A pacemaker fixes rhythm problems, but it's not uncommon to have other heart problems at the same time that a pacemaker won't help at all. Do you have a heart condition that is in fact getting worse?

I find that cardiologists will answer any question I specifically ask, but they don't elaborate,and they volunteer nothing. In your shoes, I would want to know exactly what is my heart doing, or failing to do, that is causing the symptoms I experience? Other than heart, what else could be causing my symptoms?

As for the placebo explanation of your improvement, I'd have to ask, does that mean I could be doing more if I believed I could? If so, would heart rehabilition therapy be worth a try?  How about hypnosis?

I hate being treated like a little old lady, although I am one. I find the best antidote is to make it clear that I am still an intellectual force to be reckoned with by asking questions until I am satisfied with the answers, and by challenging BS when I hear it. All the while being ever-so-nice, of course, and showing a sense of humor.                                                

Back To Basics

by LKC32 - 2017-05-07 17:56:29

I originally got a pacemaker because I wore a heart monitor for one night and found my heart was stopping for 25 to 35 seconds several times a night.  This was deemed a misfunction of the upper left chamber, so I had a single lead pacemaker.  Things got worse and they found the lower chamber now weakening after nearly a year, so I was told I needed a two-wire model.  Since I could do less every day I agreed, and my original cardiologist said I really needed a defib as well.  Not wanting to always have to upgrade, I consented to that also.  (The defib has NEVER activated, by the way.)   

Assuming I was delusional, I guess, the cardiologist who had implanted both lied to me. saying he had made setting changes he had not, then confronted me when I said it had worked wonders.  There is more; he - according to the hospital - filed the second pacemaker as a clinical trial, making some of the procedures ineligible for Medicare.  Both he and his superior denied filing it this way.  I appealed to my HMO, which was very helpful, but suddenly after nearly a year of back and forth would not even return my calls.  My wife said, "You are going to have a stroke over this $1100; it is not worth it."  I saw much wisdom in this and dropped it.  I felt I could get an attorney and win, but I would have likely had to get a doctor in Mexico to take my case if I did.  

My current cardiologist explored all of the usual breathing problems; I do not have lung problems, my arteries are free of plaque, and I quit smoking 30 years or so ago.  I know it is my fault somehow, but I want him to tell me what other things we can try. I have never had a heart attack that anyone told me about.  

To top it all off, there was a recall on my current pacemaker, which I am ignoring based on the odds of the battery suddenly quitting (low) and the odds the operation itself has dangers at my age (high).

Thanks, Gotrhythm; I am to see him again and try again to get some non-evasive answers.  Maybe he is right - I am not a spring chicken, but ...

Short of breath

by georgie - 2017-05-15 20:24:39

I had my first pacemaker when I was 50 years old. And never could really breath right again. It happened right away. I could tell but my Dr. Doesint think I am right? I am on my 3rd pacemaker and still can't breath right can't really walk much or do anything at all. But I know it is the pacemaker

Re; Short of Breath

by LKC32 - 2017-05-18 08:01:18

Thanks, Georgie; I feel as if mine has to be the cause, too.  Just cannot get anyone else serious about fixing it.  Going to cardiologist next month and will try again.

short of breath

by LucyLo727 - 2017-05-22 02:02:21

I am new to the club.  MY LVEF is 19%.  After the echocardigram results my LVEF is 39%.  I went to see different cardiologist and they all recommend me to have a pacemaker inserted.  I have no obvious shortness of breath,  mild one only when I climbed 30 steps or more. That is quite natural for a 60 yr old one who never walks much apart from shopping and riding public transport.  Otherwise, drive a lot for shopping only.

The LVEF seems to be declining from 39 to 29% and the MRI one was threatening to a 19%.  Now I dare not fly worrying the heart beat will do crazy thing.  But I have no discomfort, no diszziness, no swollen feet and I walk even faster than a young guy as I have a lot to attend to.  I am a social bird so I have 2 - 3 meetings a day.  Of course, now I hear about my heart failure problem, I reduce to the minimal to just 1 a day.  My sister died within 12 hours due to aorta dissection tear, my mom died of myocardiac infartion and so I worry about my issue is inherited.  But anyone comment about inserting a pacemaker when my present life is basically very very good.  Only the figure indicated that I have a severely damaged heart. But I do no feel anything at all, I sleep, eat, live, walk, sing and dance , drum very well.  Can anyone tell me should I go ahead and insert a foregin object with 2 or 3 wires into my heart.?  My doctor said, a 2 wire device first and later on need to change a 3 wired pace maker.  Have to meet him again and discuss to do it simultaneously or in 2 separate surgeries.  Quite worrying

 

You know you're wired when...

Your device acts like a police scanner.

Member Quotes

I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.