Newbie

Hello all,

I read some posts regarding feeling tired after the installation of someone's pacemaker, that is my issue prior to and now.

What a strange trip this has been. I went to the doctor almost three weeks ago due to feeling exhausted, out of breath and confused, I felt that way for about ten days prior to seeing the doctor at a respected clinic on Bainbridge Island in WA State. The doc clocked me at 44 beats per minute, I wore a Holter monitor for 24 hrs, turned it in and waited for 4 days before I was called by a rude and abrupt nurse and told "sorry for the bad news but there is nothing we can do for you, call 911 if you feel like *&#@^&, naturally I fell like *&#@^&, that's why I went in the first place.

It took the clinic ten days to advise me I needed to see their cardilolotist, the soonest apt was 14 days out, to me that seemed way to long to wait based on how I was feeling; tired, exhausted, dizzy and confused. I decided to call the cardiologist at the Hospital in Seattle to see if I could be seen sooner than fourteen days. I explained my symptoms to the nurse at cardiology, she said to call 911 immediately and not to drive. When I arrived at the hospital I was placed in observation overnight, my rate dipped into the 20's but was stuck in the 30's. I was given a shot of atropine which stabilized me at 57 for a few hours then held at 44 until my pacemaker surgery the next day. Had I not taken the initiative and called the cardiologist I may have died that night, yet my clinic had written "not urgent" on my paper work after they wrote Bradacardia on my paper work.

I want to make this clear, if your gut tells you there is something wrong do not let anyone tell you differently until you have exhausted all avenues for results. The clinic I go to has a quota, each doctor has to see around 30 to 40 patients each day, that is the only explanation I can come up with as to why they did not pay attention to my issues, either that or it could be my new Obama Care insurance plan, or both, you get what you don't pay for.

To get to the reason I am posting tonight, I feel the same way I felt ten days prior to going to the clinic, I am still weak, tired, exhausted and dizzy after the pacemaker implant. To sum it up, I had the symptoms mentioned above almost three weeks prior to the pacemaker implant due to the clinic dragging their feet and me waiting ten days to see the doctor. The pace maker has been tweaked once since the surgery which was four days ago, I still feel how I felt three weeks ago even though I was told by the cardeologist I will wake up feeling fantastic and told by the pacemaker tech I would feel fantastic after she tweaks it a bit, both wrong. By the way, I was awake for the surgery, I could not feel the doctor cutting me but the wires placed in the veins....that hurt like hell!

I understand the medications need to flush out of my system however I don't understand why I am still feeling identical to how I felt three weeks ago when I first arrived at the clinic. Could there be any other issues causing my symptoms other than anesthesia and meds still floating around in my system or are they the main culpret? I can see them contributing to my current symptoms but the meds didn't cause the symptoms to begin with. I realize nobody has absolute answers to any of these questions because the doctors and techs do not, but those of us who have gone through this are the best ones to ask, so I ask.......help....it has been almost a month and I still feel as weak and exhausted as ever with moments of feeling like my heart is going to pound out of my chest. I am set for 64 BPM, originally set at 60 until tweaked.


Thanks for any insight you may be able to share with me, anything is better than nothing so please do not hold back, the littlest thing could help me get through this, I need to see the light at the end of the tunnel, at least it would be nice to see it.

I have another apt with the cardiologist in two days, any questions anyone can think of would be appreciated, such as does it hurt to skydive without a parachute?

Thank you,

Jim


9 Comments

Sometimes

by Theknotguy - 2014-10-30 02:10:38

Sometimes the body doesn't react as quickly as we'd like. My symptoms were somewhere in between yours. Fortunately I didn't have the bad experience at the clinic you did. But it will prove to be good training because with heart problems you have to be your own advocate. That means that you sometimes have to get in people's faces, other times you have to stand up for your own rights, and you need to know what is going on - with your treatment, with your medications, and with your PM. Sorry it has to be that way, but it does. (And they say we have the best health care in the world!?)

I had a lot of trauma before I got my PM, so my first four months were spent getting back close to just being able to function. The next three months were spent getting back to somewhere close to "normal". The next five months were spent gaining enough strength to be considered "normal" - whatever that means. So it can take a lot of time to get back to where you'd like to be.
Did I like taking a year to get back to a functioning level, no - but that's what it took.

Based upon the amount of trauma you received prior to getting the PM can have an impact on how you feel. I don't know how many months you had your problem, so even though you've gotten your PM your body may not have adjusted yet. In the meantime I'd be letting your cardiologist know and see if they have any suggestions.
Maybe you don't feel you've been through "trauma" but your body may feel differently.

You didn't say what medications you're on. That can have an impact on how you feel. They had to change my medications around several times until everything started clicking. They even had to change when I had to take certain medications as taking them at the wrong time would have an impact on how I felt. So medications can be a factor. Another question for your cardiologist.

We see a lot of posts on this forum where a setting or a medication has been changed and the person is asking why they aren't seeing any changes. I call it the fast-food response. We're accustomed (in the USA) to walking into a fast food restaurant, asking for what we want, and walking out the door with whatever we ordered. Unfortunately the body doesn't always respond in the same manner. It can take several days for the body to adjust to a new setting or medication. In my case, some problems didn't show up for months. So while I'd like to yammer about it taking so long, sometimes it just isn't going to happen.

For example, after everything that happened, it took me seven months to get back to volunteering at a local charity. At first I could only volunteer for two hours. Gradually over several weeks I increased the time to three hours. At three hours I'd start to hurt. I'd hurt so badly I'd have to quit. Stopped in to see my cardiologist. "Doc", I said,"I can only volunteer for three hours and then I have to quit!" "And, your point?", was his response. Most of his patients could barely make it into the waiting room and I was complaining about doing hard work for three hours.

Turns out the increased activity was causing my PM to increase my heart rate - which meant I was getting zapped more. The muscles directly behind my heart in my back were knotting up from all the increased electrical activity. (Something not mentioned in my PM manual.) A couple of visits to a licensed massage therapist helped with the knotted muscles. Now I use the cramping to estimate if I've pushed myself too hard. Now I'm up to five hours - not 100% but a big difference from five months ago. Sometimes the healing process just takes time.

I hope you can get answers and start to feel better soon. I understand your frustration. As the previous post said, keep reading on this site, it's a lot of help, and I too have learned a lot. My best wishes.

Kind of the same here

by pacemaker20 - 2014-10-30 05:10:11

I went to my family doctor with my symptoms. I have had them all of my life but at 23 my parents made my stubborn butt go in. The family doctor said my symptoms didn't seem bad...then states 'I guess we can try a 24hr monitor'. When the results came back he said 'I guess there is something wrong' and sent me to an EP. That specialist then stated he didn't think it was serious but tried one medication. He was rude and condescending. I decided I would find a doctor I liked and get a second opinion. I called my grandfather's cardiologist to see if he would see me. He got me in and decided to do a 2 week monitor. On the morning of day 5, I got a phone call. 'You can take that thing off. We have to get you a pacemaker'. He then tried to refer me back to the original EP. I refused. I got another and he is the best doctor I've ever had. You know your body. Do whatever it takes to get a real answer. It's definitely worth it.

Check Ejection Fraction numbers

by Tony G - 2014-10-30 05:10:22

Hi,

I had. 2 lead pm put in March 2013 because of similar symptoms. I went from my regular doctor to a cardiologist to implant in about 2 weeks. I did feel better, but I needed to be tweaked once or twice before I felt better. Than after a year I had an electro-Cardiogram that showed my ejection-fraction number had gone down from 50% to 35%. We first tried meds but that didn't work so they just put in a difibulator with a 3 lead pm. What it does is signals both the left and right ventricles to squeeze at the same time. I am feeling better than I have in 3 years. You may want to talk with your cardiologist to see if both ventricles are in sync.

Just a short reply for now

by Hearton - 2014-10-30 06:10:24

Based on all four comments I have received I am convinced there was an Angle sitting on my shoulder guiding me to this site, you are all Angles as far as I am concerned!

All of you have said things which I really needed to hear, your individual experiences and advice has come together and given me a sense of relief knowing "immediate gratification" is not necessarily the case for all of us who have or are going through this, contrary to what the medical community has told me to date.

I want all to know how much I appreciate the time you have taken to share your expertise, experiences and opinions in an effort to help me, you are all wonderful and unique with regard to your experiences, I learned something from each and everyone of you.

I will be back maybe tonight or maybe tomorrow after a full day at the hospital for check ups to post more. I just found out I have blood in my urine which may be one of the reasons I feel so crummy so off to the urologist and cardiologist on Friday, will be a full day and an exhausting one.

God bless all of you, not only the the four of you but all working to help yourselves and others on this site, this is truly a great site, I am so fortunate to have found all of you.

Keep the positive outlooks. I look forward to getting back to pick your brains,it is much cheaper and just as good if not better than seeing a doctor.

Sincerely,
Jim

Tony

by Hearton - 2014-10-30 06:10:31

Tony,
When you had the 3 lead PM replace your 2 lead did you have to go through the entire surgery thing, as in being cut open and having to deal with all that once again? I don't suppose that will happen for me a few weeks after the dual PM I have now. I just realized by asking this question I am seeking immediate gratification, I should probably slow down and see how things progress before asking questions like this so soon but you brought up an interesting thing. I have notes from each and every post so far which I will bring in with me to the cardiologist tomorrow.
Thank you,
Jim

Advise

by Hearton - 2014-10-30 06:10:41

You guys are blowing me away, so far 7 comments and all have advise which will assist me in my quest for a healthy life.
I really want to reply to each one of you on an individual basis because all are right on target and deserve a one on one reply. I will do so as soon as I can find the energy to make it happen.
Just know how much I appreciate your input, "I'll be back".

God bless,

Jim

Amazing

by WillieG - 2014-10-30 11:10:18

Your story amazes me that when you had such obvious symptoms and it took so long to get the help you needed.
I am very sorry for you and hope you feel better soon. I had the opposite treatment and I am not sure that was good either. I experienced exercised induced heart block while biking up steep hills in May (probably out of shape from Winter). I skipped a few ventricular beats which I felt but I could still bike to the top without feeling faint or getting off my bike. In less than 3 weeks from the beginning of these symptoms, I had a PM put in during the EP study. Now, 5 months later, my heart block seems to have resolved. Pacing less than 1% and I know the time it happened as I can feel it. They say heart black can advance, but I am not convinced that I would not have had some symptom of advancement before "sudden death" that is their reason for my PM. So time will tell!

I wish you the best in feeling better soon. Others will probably give your better advice than I did as our situations are so different. This site has been very helpful to me and I hope you find answers here also.

Wilma

Welcome Jim

by NiceNiecey - 2014-10-30 12:10:51

Sorry it took you an ER visit to get what you needed but Praise God you went. Please follow up with the "good clinic" with the great reputation and explain exactly what you wrote here. You may not get anywhere but I guarantee you SOMEONE will read your letter. I'd also send a copy of it to my insurance carrier as well as my state representative. But I digress.

Yes, yes, yes, I, too, felt nearly the same and in some categories even WORSE after I got my PM. I continued to feel dizzy/light-headed, I was MORE exhausted, I suddenly had to deal with a blood clot and tendonitis in my left arm, aFib, tachycardia and BBs. I begged the cardiologist to hurry up and do stress testing, etc because they said my fuzzy brain had nothing to do with my heart. (Not true, BTW.)

I want to ask you one question: in these 4 weeks post PM, has you dizziness and brain/thinking issues improved at all?

A friend asked me that question each week and the answer was yes. By 6 weeks, I was doing much better. By 8 weeks, better still. I am now 10 months out and feel like a different person. My brain is back (all kidding aside!), I am only exhausted when I'm having a problem (tachy heart rate), and my heart is beating no lower than 60.

All of us can attest that it really, truly, does improve in time. I don't know why some of us don't wake up after the surgery feeling fabulous like they said we would. I certainly didn't.

Keep reading on this site, Jim. I have learned soooo much. And please keep us posted on your progress.

still tired

by Hearton - 2014-11-19 06:11:23

I am still feeling weak, tired but only short of breath when walking up stairs.
I have mad my pacemaker paced to 75 bpm, not more than more minute after the chance from the factory settings the doctor asked if I was feeling better yet. That sounded off to me, should I have felt better so soon if I was going to feel better? The problem is after the rate increase I am still tired. The cardiologist told me there was nothing else they could do for me and told me to see an internal medicine doc. Is that odd or is that fairly normal? He spent little time on the pacemaker however was quick to write me off.
I have Apple Health Uhited health care, in other words Obamacare, does anyone think that is a factor in the treatment I have been receiving or is it natural for an Orthopedic surgeon to write me off after one visit and one change to my pacemaker?
Thank you,
Jim

You know you're wired when...

You invested in the Energizer battery company.

Member Quotes

I am just thankful that I am alive and that even though I have this pacemaker it is not the end of the world.