New to this & not really happy

Hi to all! 

I am only 1 week from impant (just had my "wound check" appt & it's healing well). My biggest problem is the total lack of instruction/education that has been made available to me about a device that is now inside my body & connected to my heart!

My doctor was pretty good about explaining the reasons for the pacemaker & the expected outcome. I am in a-fib about 13% of the time--that's with medication (tikosyn)--but when going in & out my heart would pause & cause extreme dizziness. I never passed out but felt like I could. I was told repeatedly that the pacemaker would do nothing to correct afib, but would make it easier to treat by reducing the risk of slow or paused beats.

I was in & out of the hospital same the same day, sent home with a general information packet & the standard after care sheet of do's & don't's. It was up to me to contact the pacemaker company (Medtronic) & set up montoring. The folks on the phone were very little help & kept insisting that the app on my phone was all I needed. When my own clinic was unable to send/recieve a transmission, they ordered me a different sort of monitor. I have not yet recieved it, but i was assured that it is much simpler. I found the Medtronic website difficult to navigate and basicallly just a huge advertisement for how great their equipment is with no useful information.

To top it off, even though my doctor did stress that the pacemaker would have no effect on afib symptoms, I almost feel like they have gotten worse & more frequent. what's up with that?

I will not have an in-office evaluation for another 3 months, but hopefully when i get my monitor it will provide a bit more information. Right now I am mad, upset, even a little depressed. I feel that support is just not there, and I am wondering if I took things a step too far in getting a pacemaker when I actually felt better overall without it. Hmmm.... 


7 Comments

Fine to feel the way you are.....it will get better

by ar_vin - 2021-02-04 13:06:14

First, welcome to the club you never wanted to belong to!

The emotions you're feeling are perfectly normal for a new PM recipient but just know that you'll eventually come around to your new reality.

It's a very steep learning curve that you face with your new PM and in general the medical community is not very helpful with this.

But this is *your* life! You could  spend it being "mad" at the "world" or you could start to help yourself heal both emotionally and physically.

For some people, one of the keys is knowledge and undertanding both of your condition and of the new device placed inside you. The Medtronic website is a treasure trove of information about your device! If you're the kind of person that likes to learn, use that website It will take time and a lot of patience to work through it. 

The other great resource is this site, especially all the wonderful human beings who have walked in your shoes, understand what you are feeling and will answer your questions. Use this resource: ask questions about your condition, your device, your feelings. You'll always get answers, sometimes not the ones you want to hear.

Welcome and be kind to yourself and the world! No sense in living your life being mad!

Atrial Fibrillation (Afib)

by Gemita - 2021-02-04 13:51:01

Hello TLee,

I have certainly been where you are now and I was full of doubt and disappointment and it is not a good place to be, is it.  At least I was sent home with a Medtronic My Care Link phone and Patient Assistant for automatic and self transmissions to my clinic and lots of instructions on how to use these.  I am so sorry to hear of your experience.  Not at all a good introduction to pacemakers, but from here on, it can only get better.  When you next go to your clinic for a check, get them to link your phone App to your pacemaker, which is the best way of setting up this additional facility.  My clinic told me to wait until I go back to see them to fix this issue.  There are several different phone apps available, some better than others apparently.

Yes when you get your monitor you will at least be able to do an automatic transmission to your clinic if you get any symptoms you are concerned about and you will know that if they pick up anything worrisome from your nightly downloads (or however frequent), they will be able to contact you and advise you what is happening and whether your medication or other treatment is working.  If they see a pacing, medication or arrhythmia problem they can immediately take action.

Many arrhythmias may deteriorate after pacemaker implant.  After all the implant, although not major surgery, is still a trauma for the heart.  My Afib and other arrhythmias went absolutely wild immediately after my pacemaker was implanted and I had a very hard time for several months and thought that my pacemaker was causing my worsening symptoms, but it was just my heart acting up.  After a few months of this nonsense, everything settled down and I felt calmer too.

If you are in any way concerned by any symptoms you are getting, do an immediate download if you are able, and then ring your clinic to get feedback and reassurance that your Afib is being adequately controlled.  If they see something concerning, they might ask you to attend clinic earlier or adjust your medication.  Unless you tell them, they won’t know that you are having difficult symptoms.  

With Afib, there are many ways of treating it.  Ablation is the most successful in the short to medium term (up to 85% effective with one or two ablations I was quoted).   Anti arrhythmic meds are often not effective long term, although some patients have more success.  I was quoted 35-40% effectiveness.  Rate control medication to slow heart rate is very important if you have Afib with a rapid ventricular response rate and then the pacemaker will prevent your heart rate from dropping below the minimum set rate.  I chose the pacemaker route too so that my cardiologist could prescribe rate lowering meds without dropping my heart rate to dangerous levels, but I also had Sick Sinus Syndrome (tachycardia/bradycardia) and syncope, so I needed a pacemaker.  I presume if you have AFib stroke risk factors, you are on an anticoagulant?

There are lots of settings that can be adjusted and some programs run to help control Afib but it will be a learning process and trial and error with medication for a little while.  We have to be patient because they don’t want to rush in and alter too much too quickly.  Your heart and pacemaker will settle down during the healing period.  You should allow at least 6 weeks for healing of your wound and for your heart to settle.   In my case I needed 3 months for my heart to settle.  I did however go back to my clinic at 6 weeks for a brief check.  I am surprised you will only be seen at 3 months, which is why it is important to report any troublesome symptoms.

Did you take a step too far in getting the pacemaker?  I don’t know TLee.  Were you offered an ablation first?  Often a doctor will recommend a pacemaker if your heart rate is too high and cannot be controlled with strong medication without the medication causing severe bradycardia/pausing, so from that point of view a pacemaker is clearly able to help you, but of course it cannot stop Afib or other tachy arrhythmias.  An ablation (or two) just might stop your Afib.  I have to say though my pacemaker is providing me with some real respite from Afib at last.  I feel my AFib less and my symptoms during Afib are less noticeable too.  In fact my pacemaker has been such a help that I have put an ablation on hold for the moment, so for me I can confidently say that I have had an excellent response to pacing therapy and I hope it will soon be the same for you too.

New and mad

by AgentX86 - 2021-02-04 16:09:09

Your doctor is right and told you what the pacemaker will do for you and what it won't.  There is little likelyhood that your pacemaker will do anything for Afib.  That's not what they do.  Yes, your PM will make it somewhat easier to treat Afib because most of the drugs used to surpress (and that's all they do) Afib also lower your heart rate.  Your pacemaker will no prevent that side-effect.

Afib is a PITA but it's unlikely to kill you. ,No, your pacemaker is to stop the pauses that just might kill you, if not fixed.  Your pacemaker is the fix.  Your monitor is just a hunk of technology.  If you have trouble with it, get a sixth-grader to help.  ;-)  Personally, I'd rather have the phone app but am stuck with the #*$Y% bedside box.  Mine only transmits when I push the button but it's always a problem.

I know it's hard but you have to get to the place where you recognize that your pacemaker is a life saver.  You've lost nothing and gained a normal life.  That's the goal but if you need help to get there, many professionals can help.  Many specialize is these sorts of things.  Find a therapist who specializes in PTSD.

Give yourself time

by Persephone - 2021-02-04 16:58:02

Hi TLee - I hope you are feeling well - it's great that your initial wound check was positive.  It's only been about a week since your implant, so give yourself some time to learn and adjust to your new device.  Rome wasn't built in a day, and nobody would expect you to become fully adapted to life with your PM in one weeks' time.  Take care, and take it day by day.

A fib sucks

by Trunkmonkey - 2021-02-05 02:24:03

I had a similar issue with Afib. I was put on a beta blocker by my cardiologist that seemed to do the trick. I'd say it helped for sure. If you are active tho it acts like a govenor and it doesnt feel too good when your heart rate is up. eg My heart didn't feel good at 160 bpm. Now that I'm off the beta blocker I feel great even when my heart is 170+. No Afib now. Im post implant 11 months and off the beta blocker for about 5 weeks. So to the earlier post someone mentioned that it takes time for your body to adjust. It does. I had a pacing adjustment as well. My heart resting heart rate was low and the doctor who did the implant set it fo 60bpm and I found that the pacemaker was alway pacing. the clinic backed down to 50 and that also made a difference. I dont even notice the pacemaker now. So where you are sucks but it gets better! You will figure it out and what works for you. 

Feeling Your Frustration - Hang in There

by AnnaFerris - 2021-02-05 02:44:21

I'm about 5 days post - op and I feel your frustration.  I was in AFib 100% with RVR and sick sinus syndrome  and really feeling crappy.  I was pretty useless so they ablated the AV node and I am paced 100%.  I didn't even get to talk to my doctor before the Pacemaker was scheduled.  I got to talk to his Nurse Practioner for about five minutes and ask her as many questions as I could in the brief time.  I read like crazy once I was scheduled but the Pacemaker Club has been a lifesaver for me.  Most of the stuff online is the same old stuff over and over (mayo clinic, etc.).  The Pacemaker Club has such a wealth of knowledge and experience.  I get a lot of comfort in knowing what to expect.  Everything is so new!   I watched a couple of operations on YouTube and that was the extent of my knowledge before surgery.   I keep hoping that I won't have complications - I'm honestly not sure how responsive my doc will be.  However, if I do, I plan to turn to the forums where others have experienced issues.  I know someone on this site will do their best to help me so I can be more assertive about my care with my doc.  Just knowing what questions to ask is a big help.

You are not alone

by Loretta - 2021-03-17 23:26:52

Hi ,

I am 8 weeks with my new pacemaker.  I know how you feel. 

I always describe my experience with discharge as being drop kicked out the door with no knowledge, no nothing of what to expect with this new pacemaker. NOTHING. Totally left in the dark,ghosted. 

Thank God I found this site! 

I am still in denial,still healing ,frustrated and annoyed with this forgien body in my chest, but this site is helping me get through it.  Hang in there. From the many posts I have read,it will get better in time. 

 

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