Cardiologist just recommended I get a pacemaker

Decision time

by Persephone - 2023-05-30 21:41:26

Hi Valerie - it's nice to meet you. I realize this is a very tough decision to make so can only share my own trajectory with bradycardia due to progressing heart block.I also felt fine, until I didn't. I was around the same age as you. My main symptom was nausea at first, and I had no clue that was a shortness of breath symptom, but it wasn't long before experiencing black spots upon standing from a seated position, etc. So I had to do the emergency run to the ER to get the PM. My point in telling this story is that you have a lot of control over your situation now as opposed to being in a situation where the condition may rapidly progress upon no action on your part. Consider getting second opinions if an option to you and you're feeling like you should.

Best to you. Glad you're here and sharing information about your situation.

Pacemaker recommended

by AgentX86 - 2023-05-30 23:59:14

What sort of monitor did you have? Monitoring for thirty days gives your cardiolotist a pretty good idea of what you're heart rate is when you're sleeping and whether you have any pauses.  The worst numbers come when you're sleeping so you may not realize how bad it is. When your heart rate falls too far, not enough blood/oxygen gets to your organs for thier health and your sleep won't be efficient.

How slow can you go?  Anyting under 60bpm is technically Bradycardia, an arrhythmia. In reality, 50bpm would rarely be a problem. The closer you get to 40, the risks increase.  Under 40, is danger territory.  This assumes you're otherwise healthy. 

Stress tests and echos are used to look for structural (plumbing) problems that might explain your symptoms.  They just want to elimiate the obbvious.  Your heart can have electrical problems with no structural defects but they do need to be eliminated. Yes, tests are common but they're not going to waste resources looking too far, if they don't suspect any problem.

Pre-implant testing

by Julros - 2023-05-31 00:09:37

Hi Valerie. You are asking very good questions. 

How slow is too slow? Generally speaking, too slow is when you are symptomatic. In your case, you report fatigue. For me and others, the fatigue sort of snuck up on us. Suddenly, one day I found I was extremely short of breath walking half a block. Two days later, I had a small stroke due to an irregular heart beat. Some people experience long pauses, and this makes implantattion more urgent, due to risk of fainting and formation of blood clots. 

Will they do further testing? Probably, especially depending on your personal health and family health history. My father's side of the family had early onset heart disease, so I was given a stress test. Some folks on here have had cardiac CTs and or cardiac MRIs. 

Once you get your device you will feel amazingly energetic. Colors will seem brighter and food will taste better. You will no longer be wishing for the day to end so you can go to bed. Who knows, you may take up a new sport or two! 

information

by new to pace.... - 2023-05-31 03:46:54

would help if you partially filled in your bio as to where you live.  as sometimes are answers are different based on where you live.  You can fill in the part where information is requested about the brand after you have yours.

new to pace

sounds like it would help you

by Tracey_E - 2023-05-31 10:54:21

The monitor is really all they need to confirm your rate is low. You could do a bunch of other tests but it won't change the fact that your rate is low and it's causing symptoms. The only fix for a slow heart is a pacer. It doesn't go away on it's own, it will get worse with time. There are no meds that will help. 

When we are younger, the body can cope with a lower rate. As we age, it gets harder and harder. Hence, the symptoms now. A low rate is depriving our organs of oxygen long before we feel the symptoms. Over time, this takes a toll on the body. Organs need oxygen to thrive. 

Passing out is not a benchmark you want to use. If you are passing out, you've waited too long. We've had members pass out while driving or on the stairs, then they had to deal with healing from that at the same time as pacer surgery. 

Many of us find out after we are paced that we didn't feel as well before as we thought we did. Symptoms come on gradually so it become our norm, we write it off to something else. For me it was night and day, I could feel the difference as soon as I woke up in recovery.

I think we all agree

by dwelch - 2023-06-01 00:43:47

Despite questions about more info from you, the fact that you had a monitor and after some period of time for the docs to examine that data, they want to put a pacer in.  That long of a monitoring period is going to tell a lot more than a stress test, etc.  They saw everything they needed to see.  Some of us, me, one or more others that commented above, they literally only need to see a few seconds of my EKG to declare third degree block, get a pacer.  No stress test required.  

Looking at a comment above 60 is the norm so they say....for folks not on this site I guess.   a long time ago know, skinny and young and athletic.   my normal resting rate was in the 40s and since we didnt have ekgs free with a take of gas like you do now, the night before pacer number one I was  in the 30s when sleeping which was listed as danger zone above.

I wouldnt necessaily try to be a doctor here and guess that it is oxygen or something like that.  There are dangers that can be seen in the EKG.  you clearly can just ask and maybe they can explain it to you (being able to communicate with your doctor whether you a doctor, engineer, laywer, mechanic, or anything else. is critical for trust and your health, its not about being smart or great is is about being able to "communcate", you are definitely smarter than the doc in one or more areas of expertise but could you explain those things to the doc in a way they understand, and vice versa).  

IMO you very quickly need to develop some trust with this doc and/or find another.  Find a doc you trust then trust the doc you find.  Once you have at least a willingness to gamble level of trust with the doc then you go with it, get the device, and move on to the next phase.  This should include you making an appointment as soon as possible with the doc not a nurse or proxy.  Are you going to be dealing with that doc directly, I go to a office where there are multiple docs, this one is the EP I work with her, but my first visit was with another doc because that was a doc that saved some person I knews live with a heart bypass or something.  I quickly got moved to the ep, but unlike other offices I have worked with, this one the ep does not do the surgery there are a couple of surgeons.  some other person does the interrogation (a nurse/tech).  that is how that office works.  And actually I like this setup, but I have also had the doc does everything situation as well, does the regular interrogation, does the surgery and talks to me about what is going on a  one person office with a few staff.

I would ask a few questions about that, are you the person, the ep that will be maintaining my device, if not can I talk to that person before we do this.  are you doing the surgery?  if not can I meet the surgeon before we do this.   once you get the docs sorted, then ask the right doc the right question, okay what doI have and why is a pacer the solution, what did you see from the monitor.  Okay why i sa low heart rate a problem, why is MY low heart rate a problem.  What is the device going to do to help with that.    Tell me a little about the device, I like to hike and ride bikes and hunt does that affect the device I will get? (yes you need to volunteer that info, it might determine device or location and make your life experience much better).  ask the surgeon where are we doing this, how long before I am released (my first docs rules were new leads overnight, no new leads same day, I have unfortunately had three of the five need new leads)(imo it is much better to stay the night you get like two or three doses of antibiotics that you wont get if you go home, night one sucks royal, cant lay down cant sit up, cant walk around it all sucks, no sleeping, so might as well be there hooked up to an IV)(night two and on keeps getting better quick)

how soon do I need this device, hours, days, weeks or months?

I do not see your question as a "should I get one" I see it is "how fast do I need to get one" (hours, days, weeks or months).  And then do the above steps and more in that time frame to get the device.   Other than lack of trust in the doc(s)(/office) there is no reason to delay, get the device as soon as you can.  Understanding that the time it takes to switch docs can be life threatening, you balance the get it with the first doc, soon, then fire that doc and get it maintaned by the next one.

Media, movies, tv, etc shine a bad light on pacemakers as if the pacemaker is the burden the thing that makes you weak.  No the pacer is the treatment, it is the glasses it is the pins or metal holding the bones together, it is the solution not a problem.  but the ignorant like to let the masses think that the pacer itself is a problem.  I hope that is not the issue here.   You are going to have doubt and anxiety.  Is this a mistake, do I really have this condition, is it really this bad, do I really need it right now.  Most likely with the info you provided, yes you need it right now.   but in your head before and months after there is the mental side of this well beyond the device and recovery period.  coping with having a conditon and a solution for that condition.  you very quickly need to find a doc you trust and trust the doc you find (do what they say when they say including surgery)  if that doc you trust says yes and soon you do it soon, if that doc says maybe but we can wait and watch it some more, then you can do that.  Definitely at some point but not right now lets keep an eye on it, then do that (that was my story for years from pre-teen to teen before getting the device, now had I been honest with the doctor he would have as he did later, explained how and why I should have died with all the activities I was into and I am shocked I survived childhood)(because he told me once I should have died instead of not doing those things I just stopped telling him, I was a teenager).  Im the exception on this site as I had years to prepare, so many folks eithet didnt know or waited and ended up with some event,  for many people that event is not just a fall down some stairs, that event is death.  We only get to talk to the ones on this site that their event was non-fatal.  No reason to suger coat it, is not having one worth dying over?  
Worth getting in an accident and killing others?

hehe, I always struggle staying awake in meetings, etc.  and I have a fully functional pacemaker for over 35 years.  

Call the doc, ask more questions here, not speaking for myself but you are in very good hands here.  The collective knowledge here is better than any doc can help you with.  Experiences and self research and numbers of questions we have asked our docs.  Lots of good stuff. (yes there is a lot of fear and axiety content too, and yes it is tough to wade through all of it to find the nuggets of great knowledge)   Make the appointment, take the time between now and then to calm some of the anxiety, gather some questions, ask more questions here if need be.  Far better to plan your treatment than to have it any other way.

Good luck, welcome to the club, come back soon.  A pacer is very easy to live with you forget you have it, literally.

Thank you for your comments

by vmarshmellow - 2023-06-10 02:45:13

Hi!

Thank you for your comments and support!

I have just now finally come back to review responses to my inquiry. In the meantime I have come around to realizing that I need to get the pacemaker and sooner would be better. My pulse went down to 30 last night while awake and I have no idea why.

I meet with the cardiologist on August 1st and I think I get scheduled then. I hope I make it that long. My pulse has been slowing down since I posted. I had been taking Lisonopril for years and I was put on Losartan Potassium because I asked if I could possibly have cardiac cough and was told I had a cough side effect from the Lisonopril. The Losartan makes me feel TERRIBLE including insomnia and I had to put my foot down and request over and over to be changed to a different medicine. They finally changed it to Clonidine HCL which can slow your heart down? I'm so confused. It seems like everything slows my heart down. Eating. Not eating. Sleeping, Not sleeping. Sugar substitutes.

So yes, it turns out the the "how slow is too slow" question is moot and the real question is "how fast can I get it".

We don't have a huge selections of doctors where I live but my cardiologist is respected in this area and has like 30 years of experience. 

I have not passed out (yet) but am finally at the point where I am feeling light headed and dizzy often. I get up and walk around to get my heart pumping but I have decided to take it as easy as I can until I get the pacemaker.

Valerie