New

Not in control

by Theknotguy - 2020-01-09 20:24:16

I know it's really hard for doctors to feel they are not in control, and you're not in control of you heart problems and your pacemaker.  Unless you're thinking of quitting your current job and switching over to being an EP you probably won't get all the answers you'd like.  That's why the EP's get paid the big bucks.  They can read those squiggly lines and interpret all sorts of things.  

You won't be seeing your EP as often.  Actually that's good.  If your EP is seeing you all the time, you've got problems and that isn't good.  If he waves at you as you walk down the hall of his office that means everything is going well for you and you have less to worry about.

When things are going good with your heart they don't need to see you more often than every six months.  Some heart problems develop slowly and they won't see anything in less than six months.  For me it was the opposite,  I had a change in activity level and my pacemaker couldn't keep up.  After six years with my pacemaker it needed a change to keep up with my activity.  You'd think after six years they wouldn't need to do that, but they did.  

Some of your questions you'll need to go back to your EP and ask him/her.  You can ask your pacemaker tech some questions but he/she may also refer you to your EP for answers.  

If it's any consolation, when they adjusted my pacemaker this last time, the tech came in, pulled up some screens I had never seen before, then started asking questions.  He was able to go back to the day I was having problems, pull up the squiggly lines and determine what changes needed to be made.  I really didn't understand the technical terms he used for the changes he made.  All I know is that I feel a whole lot better after they were made.  

If you're still having problems of not being in control, you might want to see if your EP or hospital has some help groups you can attend.  I think it was nine  months before I got out of my vehicle and walked across the parking lot without thinking about my pacemaker.  It's is mentally hard to give up control to this unit sitting under your skin and wonder if it will be there when you need it.  Really scary at first.  But after six years, we (the pacemaker and I) have settled into a routine and get along fine.  

Hope your adjustment goes well.  

It's Long, but it's the lessons I've learned since May 2017 when my heart stopped for 31 seconds

by MartyP - 2020-01-09 21:11:49

Every now and then I update something I call lessons learned and have posted it here in hope that it can help some of the newer members who have so many questions and are looking for answers.

If you have suggestions to add to the list, please add a note or send me a note, and I'll include it in the next version. I hope this helps and doesn't add to any concerns you have.

So I’m a 74 make that 75 year old male in reasonably good health and this is was first major health “episode”.

On Wednesday May 28, 2017, I fainted dead away at a diner having breakfast with my wife. Ambulance to the emergency room, all kinds of tests on Wednesday and Thursday but nothing showed - I never got to the “tilt table" test. On Friday, May 30th at 6:30 AM in the hospital, the nurse woke me up saying my heart stopped for 31 seconds - 3rd degree heart block, thank God I was in the hospital - I could have killed myself, my wife and may be others - there was NO warning. Four hours later I received my Medtronic’s Dual Chamber PM (now called Sparky) after the nurses woke me up at 6:30 AM.

First, I am glad I have it. But over the year I learned some things (and I hope I’m on the right track) that I wanted to pass on and also to ask for a “gut check” to see if I have it right and they can help others.

Generic Settings - When my Sparky was put in it was set with a “generic” set of codes. In my case it was set for 60 BPM. By Tuesday I felt like my heart was hurting - I called it a “heart ache”. I went back to the cardiologist and after looking at the numbers they did some adjustments and it helped a little, but not enough, I was still getting that “heart ache”. It wasn’t until July 26th when I went back to the doc that they reset it to 55 BPM and that was a lot better. ----- So the lesson learned … “if you have any doubts, there is no doubt, go back to the doctor” both the cardiologist and the electrophysicist.

PVC’s - Premature Ventricular Contractions - wow, no one told me about these. For me they felt like my heart was pounding and if I check my pulse it feels like a skipped beat, but it’s actually a PVC. I remember “Tom” saying that he had them for ten years and his doctor said “they won’t kill you”, but for a newbie they are uncomfortable and scary. For me, before I knew what they were, I thought something was very wrong and at 1:00 AM my wife took me to the emergency room - 5 hours later, nothing found. ------ So the lesson learned … Either before or after your PM, talk to your doctor and ask lots of questions about what you could / should expect and what you may feel … your heart won’t stop, but it will be different”.  What I think I found a little later on, at least for me, when I’m not doing much and my heart rate gets into the high 50’s or low 60’s; again my lower rate is set to 55) I tend to get more PVC’s sometime 2 a minutes - they are scary until you know what they are. I do take Magnesium with Taurate (I get it from Amazon) and I think it keeps the PVC’s in check for me.  Usually none, once in a while perhaps 1 or 2 a minute for a few minutes at most.

Caffeine - I used to drink “Black Magic” coffee and caffeine diet soda, PVC’s here they come. ------ So lesson learned, some drinks and maybe some foods (high sodium and high sugar content foods) will have to go, do some testing to figure out what may give you trouble and cross them off your list. More recently I’ve started to add back some caffeinated coffee, but they do tend to kick off one or 2 PVC’s. 

Stress and PVC’s - for me it’s like oil and vinegar, they don’t mix. One morning was particularly stressful, nothing special just rushing to get a few things done before I had to go out. The PVC’s started right in and lasted on and off for a few hours. ------- So lesson learned - try hard to reduce stress as much as you can, but if your heart starts to pound at least you know what may have caused it.

Anxiety and Depression - For me it hit pretty hard. At the beginning, I napped a lot and felt just lousy. I would tell my wife my head was “fuzzy”. It was hard to feel “OK” with myself, particularly in the mornings. I went to my GP and after talking with him, we decided to start taking an anti-depressant, in my case the 50 mg Zoloft generic. I had been on it for about 3 weeks and it started to take off the lows, for me there are some side effects, some can be troublesome, but make sure you ask your doctor about what you might experience.  I’ve also started seeing a psychologist, Melvin is 82 and I love him!  I knew from past experiences they could help me through the next few weeks / months until I’m fully OK with myself. ------ So lesson learned - if you are anxious and or depressed, see your psychologist and/or psychiatrist. Your body has changed, your life has changed, it will pass, but you may need some help until it does. If you need to talk with someone who has the experience and talked with others, seek out a psychologist who can help you - there is no shame, it’s usually just a chemical imbalance in your brain.

Panic and Hyperventilation - On August 22, 2017 my oldest grandson was leaving for college the next morning for the first time and we are very close. Family dinner was at our house and I started to feel dizzy and weak and my heart was pounding. Went to bed and started to hyperventilate - wow that was no fun at all, couldn’t catch my breath. Called 911 and back to the hospital. A whole bunch of tests, but nothing found. I asked for a psychiatric consult and met Daniel, a wonderful psychiatrist. He upped the Zoloft to 150 mg and prescribed Ativan for breakthrough anxiety and that helped a lot. I was on Zoloft till March when I started to wean off, and now I’m off completely. It really has helped. So if you are depressed the meds can help, but wean off when your can – but work with your doctor and you don’t want to come off too fast – assume at least a month to 6 weeks.

On November 15, 2017, my wife and I had gone shopping at Kohl’s and after about 15 minutes I started feeling faint, my heart was racing, and I had to leave the store.  Got home and my blood pressure had spiked to 152 over 97 with 57 BPM.  It was a major anxiety attack that lasted till November 24th.  In addition to the Zoloft I did have the Ativan and it helped a lot!!

So as a summary, depressed from July 26th till September 4th, Panic and Hyperventilation on August 23rd and depression again from November 15th till November 24th.

So lesson learned -anxiety and / or panic and/or depression can occur and sometimes return. Your life has changed and needs time to adjust. It passed once it will pass again, you just have to muscle past it. But, if it really is stopping you from doing what you must do, seek help.

OCD and FitBit's - Yup, it can happen. For me, I started checking my blood pressure and heart rate many times a day, some days 10 or 20 times  or more.  I created a spreadsheet to track the data. Everyone told me not to do it, but I did it anyway. I got the Fitbit and the information is very detailed. It lets me know when Sparky was pacing and for how long, pulse history, sleep patterns, etc. Should I have gotten it? No way! NO WAY !!!!  The last time I saw my electrophysicist I gave it to her and was glad to get rid of it. ----- So lesson learned - if you have OCD tendencies, you may want to stay away from FitBit’s and things like it.

Time ------ So Lesson learned - time is a wonderful healer. It’s been about 12 month’s now since my near death experience, I’m off Zoloft and Ativan and I rarely think about Sparky and the sometimes difficult road it has been to get here.  I’m back to working with a trainer and lifting heavier than before Sparky arrived (210 on the bench press).  I feel good and while not knowing what lies ahead, I’m at peace.

Finally, I’m alive, not dead. My family cares about me, and I care about them. I’m grateful that the problem was found and that Sparky will keep me alive. Am I still fearful, maybe once in a while, but I’m hopeful that there are many years ahead and that when it’s time for me to go, it will be for something other than my heart simply deciding to have an “electrical short” and stop.

ANY QUESTIONS - JUST ASK BECAUSE ....

"We know a thing or two because we've seen a thing or two" 

Good luck, be healthy and as Spock said “LIVE LONG AND PROSPER”.

WOW Sparky 101

by Joe Newbie - 2020-01-10 01:40:25

Hi,

You answered A LOT of my questions and LOVE the details. THANK YOu FOR WRITTING ALL THAT. :)

That leaves me with ONLY ONE QUESTION.

WHY am I the only one that has a PM set to 80bpm as my resting rate? I never turn off, I can only sleep when I pass out from being up too long. 

You need to find a much better EP

by crustyg - 2020-01-10 09:54:19

Many/most patients have an emotional adjustment in the first months after implantation, and I'm no exception - also a physician, also had to struggle for seven years for anyone to take me seriously and I'm on my fifth EP doc in my area - he's a keeper.

I also nearly freaked out when folk said 'that's you for the first year'.  The reality is that for SSS patients (are there any that *don't* have chronotropic incompetence?) the tuning of your PM for your requirements and lifestyle is CRITICAL and should be done about 6 weeks after implantation.  I was lucky enough to be able to spend an hour on a static bike having my box tuned - required the BostonSci rep as there are so many parameters if MinuteVentiliation is enabled (essential for road-cyclists) that you might never converge to a suitable group of settings.  The BradyRefGuide is a good start, but there's a lot of additional info that the field reps have covered and the experience of knowing the likely clinical effect of each adjustment is likely to be beyond the average EP tech.

My initial post-implant settings were almost the default, I was in the wrong mode and nothing was set up as we (EP doc and I) had discussed at great length prior to implantation.  Some of this was the normal lets-wait-while-the-leads-bed-in phase, some just poor work.  But happy ending.

IMHO you need a *much* better team looking after you.  You and I know that every test, every investigation can sound like the death-knell because you know what's being checked for.  Caring for docs and nurses is always difficult but their requirements *are* a little different.

Joe Newbie

by AgentX86 - 2020-01-10 11:50:11

If I recall, you had an AV ablation and a VVIR CRT pacemaker implanted (same as i). If so, they set your resting rate to 80bpm, at first anyway, because there is a high incidence of SCA with AV ablation patients for the first month or so. Raising the resting heart rate greatly reduces the chances of this happening. After a month or so, they can reduce the rate some, and back to normal in a few months.  Patients and EPs vary, of course. They had to raise mine back to 80bpm because I was having  PVCs.

New

by Mallya - 2020-01-10 12:39:22

thank for your comments but I can’t tell which comments you are referring to

engineer

by dwelch - 2020-01-11 20:45:06

I am an electrical engineer, I know I know more about the device than my EP, she has no problem telling me that, tells the tech to give me whatever printouts I want, etc.  But thats not the whole story the device, the cables the phone boxes, etc, they are tech, I know how they work.  She is the EP, doesnt need to know how the wiggly lines get on the paper, does need to know that this blip is atrial the other is ventrical, its size and shape and duration and relation to each other means something and from training and experience the prognosis and treatment are generally known, just like you can tell a cold from something more serious.   

My heart issue was found by my pediatrician but this was before you got EKGs every time you showed up somewhere.  I have complete congenital heart block today they would have probably put a pacer in a decade earlier than they did for me and the pediatrician would have been involved at least initially in seeing/hearing it I hope they train for that today.  Folks like me and Tracey_E are often the youngest patient in the cardiologists office, so while possible that you might see one child needing a pacer in your career the odds arent necessarily there.

Doctors are patients too, you get to experience the waiting rooms and lack of info that we all get to experience.  Hopefully you can find an EP that can answer questions, appears to care, etc.  it is true for us non-doctors as well, find a doc you trust, trust the doc you find.  If you dont like the EP for whatever reason, switch, user your "im a doctor" status to possibly get through the phone tree and past the nurses to get a call from the doc and have a chat. otherwise just schedule appointments.

As far as how the pacer works, what it does for you, etc.  Lots of experience here. I have heart block, one of the best/better heart problems to have because it is trivial to fix with a pacer.  I dont know about SSS but there are many others here that have it or do know about it.

I may have just replied to another question of yours.  Every visit I see the EP.  The nurse comes in, asks the same questions which by now should all be in the computer database, but are for some reason not (I have a rough idea but thats not the point).   Some practices that nurse wires you up to the interrogation box, some that person doesnt.  Some that nurse is the person that also does the interrogation, some have a separate person.  My first device the doc himself did it all, not my experience since then.  The tech/nurse captures the EKG, performs tests including more captures.  I certainly feel some of the tests, but its fine, esp if they warn you first, I no longer get pissed if they dont.  They finish by printing out the report for the doc, I ask for my copy of the report, generally that goes without incident, on rare occasions my copy went the doc and then when the doc came in she gave it to me.  I think I had to sign a waiver once, I think it was that specific tech that had an issue not the practice.  The doc reviews the report then comes in to see me we chat about it and visit is done.  This is how it has generally been for 32 years, different towns, insurance companies, doctors offices.  If you are not getting that experience and are lets say in the USA, then find another practice.   Sometimes you have to drive a ways to next big town, but its worth it.

I chose not to have the take home box so my punishment is I have to go in every 6 months instead of once a year.  Will see how they handle me as this device reaches end of life, this doc no doubt and myself certainly have had pacers before the phone boxes were common and long before these take home boxes came out.   There have been posts that in other countries the policy is you dont get to go to the office until the take home box says there is a reason to, I assume that means several years.  I wouldnt be surprised if something like that starts happening here in the USA as well, but we are not there yet, we are very lawsuit happy so if one person dies due to a software issue in the box, or the internet didnt work one day, that will affect their bottom line if that gets out.  One already had a box software issue that they hid from the FDA and got publicly bashed for lying about the bug.  had to replace a lot of devices not just boxes but pacemakers.   Note all the major brands are good they all have hiccups from time to time, sometimes it is best to go with the brand that just had a problem as they are working harder and being watched better than the others for a short period of time (the EP picks your pacer and brand generally that is not something you do, find a doc you trust, trust the doc you found.  Just like parents put their kids lives in your hands you need to put yours in your EP/cardioligist)

good luck, sorry for the long reply, pacemakers aint no thing.  

look it up here

by dwelch - 2020-01-11 21:04:04

I would consider pacemakerclub.com to be the medical resource for pacemakers and how they work.

While a large percentage of the content has to do with pre-and post fears/unknown.  Can I use my lawnmower or my microwave.  There are still lots of nuggets of good information.  Stuff that folks have found on their own, have been told, have figured out through experiments or experience. 

I understand it is hard to wade through all of it and find those nuggets.  but you can always ask.  and unlike other sites the folks here just answer it again if it had been asked before rather than link the prior answer and call it done.