DIFFICULTY BREATHING

Before my heart's electrical system was destroyed with a drug--Armour Thyroid, I had good aerobic capacity.  Now whatever I try to do I am breathing hard or out of breath.  My 2 lead St. Jude PM is capped at 130 which is all the EP would give me.  I use to play pickleball well but now I can barely play and often with pauses to catch my breath.  Even household chores like mowing the grass or vaccuuming are problems and require me to rest often.  I'm 80 years old and no one cares it seems.  When you're this age most doctors are only interested in their liability and not your life style.  If I sound jaded and/or angry I probably am. I had a stage I heart block that morphed into a complete heart block.  I thought I might be in heart failure with all this ventricle pacing but according to my EP I am not.   


10 Comments

breathing

by new to pace.... - 2022-04-27 18:38:14

Sorry to hear you are having these problems.  You have a right to be angry.

 Maybe you should change your EP, as he does not sound like he is listening to you.

new to pace

New EP

by Swangirl - 2022-04-27 18:45:03

It is difficult to get any kind of an EP.  It took several months to get this one and his next available appointment for me was 8 months out.  To get a specialist of any kind requires a referral from another doctor.  Healthcare here in the US is problematic especially with Medicare.  

SOB

by AgentX86 - 2022-04-27 20:48:00

You're really going to need an EP to sort this out.  An EP is needed for any electrical problem unless it's been shown to be stable. Even then, you're going to need a direct path to an EP if something changes. This is particularly true for those of us who have pacemakers. A cardiologist can watch for changes.

An EP can find out why your PM isn't performing as it should and make necessary adjustments to optimize your quality of life. You don't say exactly what your electrical problem is but limiting HR isn't unusual.  Mine is limited to 130, as well.

Clarification: Medicare, itself, has no doctor limitation, as long as they take Medicare customers (almost all do).  There are additional plans on top of basic Medicare that do have limitations. Whether you can see a particular doctor, with or without referral, is completely up to the plan you've purchased or your willingness to pay what Medicare doesn't (it's not as much as you might think).  With my additional ("suppliment") plan I can go anywhere to any doctor in the US who takes Medicare, with no referral at all. I pay nothing additional out of pocket for it. Your insurance policy on top of Medicare matters. Medicare itself isn't horrible but it's far more complicated than it need be.  Drugs are a completely different kettle o' fish.

 

Upper Pacing Rate Setting

by Marybird - 2022-04-27 21:57:58

I'm in the same boat you are, Swangirl and Agent, my upper pacing rate is set at 120 ( lower rate set at 55, with rate response turned on). The EP set the rate limits at my 6 week post-implant visit, and while sometimes when I am exercising I'd appreciate my heart rate going a little higher than it does, overall I find these settings ok. 

They set the upper rate at 120 they said, so as not to have any issues with the tachycardia alert they set for 140 on my pacemker.

I also take fairly high doses of two rate control drugs (metoprolol and diltiazem) to control my tachyarrthymias, including a-fib. So no matter what I do, my heart rate won't go up over 110 at the highest, and more often I'm lucky to get it up to 100 when I exercise. I have found that the only time it gets up over 110 these days is during those episodes of a-fib or whatever those tachys are, and my efforts at vigorous activity for any length of time will often bring about the a-fib/tachycardia.

I've discussed this with my cardiologist, who's explained that they don't want my heart rate over 100-110 at any time, and for exercise, to go for the duration instead of the intensity. There is also something about "perceived intensity", which I guess means working as hard as you can with that low heart rate. That is what I do, and there are times I have to stop and take a breather before I resume what I'm doing. 

I'm assuming that the EPs tend to set the pacemaker upper rates for older people fairly low ( I'm 74), either assuming older people's exercise tolerance doesn't need higher heart rates, or that perhaps ( and I'm guessing here) that those older hearts are better off staying at lower rates ( less than 130) than the very high heart rates achieved with exercise in younger people. 

I don't know if you could persuade a new EP to raise your upper pacing rate, or if it would help your shortness of breath during mild activities if it were raised. There can be a number of reasons or other problems associated with shortness of breath,  and it might be worthwhile for you to  check these out with your primary care doctor, or your EP/cardiologist.

In any case, I wish you well. 

New Doctor

by Swangirl - 2022-04-28 00:50:19

I do have the Medicare that allows me to see any doctor who takes Medicare and my supplement covers what Medicare doesn't  However, when you call an EP to make an appointment you are told it needs to be a referral from another doctor.  It is not a simple task to find a new EP.  There is a lot of ageism in healthcare or what we might call unconscious bias. (This is documented.  Not just my opinion.) When I described this problem with aerobic activity and frequent breathlessness, the EP's response was "You aren't an Ironwoman".  He had no idea I had been a runner, and biker, it was just a way to dismiss my issue with a non-response.  Our concerns are met with statistics like "95% of all people with heart block never get heart failure". Many of us are living past our expiration date and have to learn how to manage this system.  .  

New Doctor

by Good Dog - 2022-04-28 08:22:02

I don't understand why you cannot get an appointment? Could it be the area in which you live? The need for a referral is usually a requirement of HMO's which is often the case with Medicare Advantage plans. However, that is never the case with Medigap plans. If you have a PM, that is all you should need to qualify you to see any EP/Cardiologist. If you do have an HMO and a PM, I can't see any primary care Doc refusing to give you a referral. Now as far as getting an appointment within a short time, that can be a problem. My cardiologist is scheduling appointments many months out. Whatever the case, just don't give-up.

Dave

Good Dog

by Marybird - 2022-04-28 12:38:08

I think Swangirl is saying that in her experience EPs are not seeing new patients without a referral from the patients' current doctors ( ie, PCPs or cardiologists). So patients can't just pick an EP and make an appointment on their own, they need referrals no matter what insurance they have, that's the policy of the individual EP. 

From what I've seen, any number of different types of specialists have the same policy, ie, patients can't "self-refer", theyhave to be referred to the specialists by their primary care doc or another healthcare professional. The rationale behind this policy would be that another licensed provider has "vetted" the patient and determined the patient really has a problem or condition that could be helped by the specialist. Of course, as you say, having a PM would indicate the person has cardiac issues, but it's also up to the individual doctor as to whether or not, and when they could see a new patient.

Marybird

by Good Dog - 2022-04-28 12:58:00

I understand. I guess that I just don't know why they would need to be "vetted" as you put it. If they have a PM, then they need an EP. I mean; it is not like seeing an EP is optional? I can only guess that maybe there is a shortage of EP's and they are just booked solid?

Marybird

by Swangirl - 2022-04-28 13:52:58

Marybird is right.  It is the doctor's policy in this area of California to require a referral from another doctor.  EP's are booked many months out, some not taking new patients, and not easy to switch.  Cleveland Clinic however has a second opinion program they do online for $1850 (no insurance).  They will collect all the information and meet with you online to render an opinion and answer questions.  I think after I get this next Echocardiogram in a couple of weeks and see what information I may get from my current EP I will consider the Cleveland Clinic option.  

Thank you everyone for weighing in on my situation.  I really appreciate being heard and responded to.  This platform is great for having a forum to vent if nothing else, but often there is some real help and support.  

New doctor

by AgentX86 - 2022-04-28 14:12:57

The bottom line is that she has no choice. If her doctor is misogynistic or  age descrimating, she has no choice in finding another doctor.  It's dangerous having a doctor who refuses to take your health and quality of life seriously.

BTW, my wife was just referred to a cardiologist for AF (she had no idea before her physical).  His waiting time for a new patient was about a month.  My EP was somewhat longer but the referral was from another EP. Referrals aren't required by Medigap plans but should be a trivial matter with any PPOs (HMOs are a real problem unless you're never sick).

Note that the "no insurance" price is completely bogus. The only reason for these inflated prices is to show regulators "how much" they're spending on pro bono cases. Medicare pays about 20% of that number and even someone without a medigap or advantage plan will pay 20% of that. So, of that $1850, the actual out of pocket cost would be more like $75. Yes, I've gone through my bills and medigap reports and that's about what it works out to.

Other insurance pays about 40% of the "no insurance" cost. It really is a bogus number.

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So, my advice is to go about your daily routine and forget that you have a pacemaker implanted in your body.