BEYOND Frustrated!

Sooooo for me this whole pacemaker thing came out of nowhere last Aug/Sept. Whenever I climbed the stairs to my front door I would lose my breath - be doubled over trying to catch it -feel light headed - my heart felt like it was racing - and... the tops of my legs burned as if I had just run a mile. When I was finally able to get insurance after the first of the year, they did a lung function test that came back ok so then they ordered an echo stress test which was supposed to take about 45 minutes with 15 on a treadmill. Well less then two minutes on the treadmill and the cardiologist said "we're done here" and I said that can't be good and he said "No it wasn't". Seems that for the past several months, what I had thought was my heart racing was actually the opposite and my heart rate was actually dropping (bradycardia). Sol about six weeks later I had a pacemaker implanted on May 08, 2014. Then on May 16th the surgeon had to reposition the ventricular lead because, although it was firing (it felt like someone was flicking my heart with a finger) the lower half of my heart was not getting the message. When the surgeon tried to reposition the lead, my heart went into V-tach twice. Then the third time so much so that my surgeon told me at that point he pulled the lead completely out and let my heart just rest for about 20 or so minutes. He then positioned it about 2 inches away from the previous spot. Because of the complications they kept me overnight for observation. My last visit with him (until next year) he said my atria is firing completely on it's own but the ventricular lead is firing 91%.
Beginning with the first night I received the implant I had been to the ER 4 times because the pain was SO intense with every single breath in and out. And every time they sent me home with NO answers in fact the last time was the night they released me following the operation to move the lead. They did a CT scan to rule out a post-op blood clot in my lungs and when the ER Doc came in he said "well there isn't a blood clot so you can go home" and I'm like… What about the pain? and he said "Well you have pain medication"! And I was like… REALLY? I wasn't looking for pain medication I wanted to know WHY I was in so much pain. Well...after getting NO answers I drove 100 miles to Virginia Mason Hospital in Seattle and was diagnosed with Pericarditis. * NOTE * it was pretty ironic… having not gotten any answers I had researched my symptoms and the morning before I drove to Seattle I posted on facebook one sentence, "My guess is pericarditis" and I nailed it. They put me on a heavy dose of ibuprofen 2,400 mg a day for two weeks and the pain went away however they did warn me it could come back and sure enough it did. Another visit to the ER and back on the NSAID. I then went to another cardiologist who ordered blood work and Nuclear Medicine Stress tests to rule out an autoimmune disease. But they came back ok. SO I don't know what I'm supposed to do now. I still lose my breath walking from my car to my front door. I have about 14 stairs. But I've even noticed the shortness of breath while taking a shower or rolling over in bed and even reading out loud to my little granddaughter. To date not one doctor has actually witnessed what happens when I climb stairs. For the nuclear medicine Stress test they realized that the treadmill wouldn't really work because of the pacemaker so they used a vasodilator. But you know??? Now that I think about it, they should have had me use the treadmill. So I guess I'll call them Monday morning because I can NOT keep going on like this.
I apologize for the length of this and thank you for taking the time to read it.

5 Comments

Continued shortness of breath

by Selwyn - 2014-08-10 01:08:53

You certainly have had a rough time! At least your PM seems to be working, or is it? I did wonder whether the rate response function was switched on? This is worth thinking about.

However, not all your symptoms are exercise related. Why are you short of breath reading a story or rolling in bed? Could you be having an arrhythmia? There may be some residual anxiety given the traumatic time you have had- this should not be discounted; it should be a positive diagnosis rather than one of exclusion. Residual anxiety uses available energy and makes you tired all the time.

Dynamic cardiac stress testing is reasonably reliable. In any event a stress ECG is only 90% good for picking up problems and may miss intermittent arrhythmias all together. A stress ECHO helps understand whether your heart has a decent cardiac output.

You are absolutely right to call them again and keep on to them to get you sorted. As long as they listen, and are willing, and they are a decent department, I would be reluctant to start off again with a new set of physicians that do not have the benefit of knowing your case.

In the UK you are entitled to a second opinion ( on the NHS) and this is best done via that specialist referring you to a colleague for this. Especially for difficult decisions that are experienced based, this is valuable.

second opinion

by Tracey_E - 2014-08-10 08:08:05

I think it's time to get another opinion, find a dr who will take you seriously. My first thought is you have had two surgeries, one of which really aggravated your heart, then pericarditis, so it's going to take some time to heal and get your energy back. However, the pain should be getting better and your loss of energy seems excessive. They should be monitoring you and making sure the pericarditis is better, not just sending you home with ibuprofen. Have you had an echo since all this started? That measures heart function, how efficiently it's pumping.

You are correct, a treadmill can be very helpful and there's no reason they can't do one on a pm patient. Watch what the heart does on exertion, it's pretty simple. In my case, I had a second problem we didn't know about. We saw it immediately when I got on the treadmill and they were able to reprogram the pm to fix the second problem, also.

Is your diagnosis av block? Most of us with av block pace ventricular every beat, or nearly every beat. That's normal.

Clarification

by Gotrhythm - 2014-08-11 02:08:56

Frustration with cardiologists. Been there, done that. It felt like I was trapped in a slow motion nightmare.

Others have recommended second opinions, but as I read your post, it looks like you have sought second opinions, but have no better understanding of your condition.

First of all, I suggest you ask for referral to a major university teaching hospital. They see rare conditions all the time, and they have the resources to tap nationwide data banks. They also model listening to young doctors even if the teaching doesn't take.

Second of all, educate yourself. The better you understand the heart, the pericardium, and your pacemaker--what it does and doesn't do--the better you will be able to communicate and the better you will understand what you are told.

For instance, the nuclear stress test. The doctor didn't do a treadmill, not because of your PM, but probably because he/she thought your breathing problems would limit your ability to move fast enough to get your heart rate up.

Finally, in my experience cardiologist do not volunteer any information or explanations they don't have to. You need to educate yourself about pericarditis. (You've obviously done some research.) The effects of pericarditis can sometimes linger even after the inflammation is gone. You need to know what questions to ask.

Hope this helps. Keep coming back to this site. There is information and support.

Re: Clarification @ Gotrythym

by stormynw - 2014-08-11 03:08:07

Thanks for your response :) Actually it was exactly because I had a pacemaker that they decided they were not going to put me on the treadmill. They had the entire conversation in front of me and they said that they felt the pacemaker would compensate and the readings would not be an accurate picture of what my heart was doing. I can't get into my PCP until the first of Sept. but I had already decided I was going to ask about going over to the University of WA they have an excellent Medical program. I may even call over to the UW myself. When I went to Virginia Mason in Seattle I just called them I didn't have a referral.

Good for you!

by Gotrhythm - 2014-08-13 12:08:07

Glad to know my suggestion coincided with your inclination.

I know how frustrating and confusing it is to be told nothing is wrong, when clearly, something is. When I realized the reason I couldn't get any answers that made sense was that my cardio just plain didn't know what was going on, and so was treating me as if I (not the heart/PM) was the problem, I saw no reason to wait. I called the office and I didn't ask. I told them I wanted a referral.

I don't know about Washington, but here, if you ask for a referral, they have to do it. Period. I was glad I hadn't delayed. It still took about six weeks to see the specialist at the teaching hospital.

"To date not one doctor has actually witnessed what happens when I climb stairs."

At the hospital, they listened to me carefully, and had me do things until they saw what I was talking about. I also made sure I arrived with my symptoms already in progress. And I scared the tech to death when I collapsed. YES! [pumps fist]
The dx was instant.

Sending you good thoughts. Here's hoping you get some answers that make sense soon.

You know you're wired when...

Your pacemaker receives radio frequencies.

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