Brand New Pacemaker

Three weeks ago I started having episodes of bradycardia.  I went to the ER for an infection in my eyelid that wasn't healing with oral antibiotics.  They gave me IV antibiotics but they were more concerned that my heart rate wouldn't climb out of the 40s.  They admitted me.  I returned to the 70's and after 2 days they discharged me and told me to stop taking the blood pressure medication I had been taking for six years.  Three days later my heart rate dropped to 32 and I spent the day in the ER.  The following Monday I was able to see the PA at the office of the cardiologist who I had seen in the hospital when I was admitted the previous week.  She put me on a Holter Monitor that sent real time heart data to their office.  The next day I awoke and my heart was running between 165 and 185,  I was in A-Fib with RVR and the Dr's office called me and told me to call an ambulance. I was just discharged from the hospital this evening, after having had a pacemaker inserted on Thursday and a re-surgery on Friday when it was discovered by X-ray that the leads were too short.  I was doing swimmingly Friday morning, doing fine on Tylenol and not experiencing undue discomfort.  However, they went back in on Friday early afternoon, and I was REALLY hurting when I awoke after that second surgery at the same site.  In addition, my entire shoulder and my left-hand scapula were seriously hurting.  They put me on 2 mg of Dilaudid and that helped considerably with the pain.  Originally, they were going to discharge me on Friday, then they thought they would send me home on Saturday.  I was still in too much pain to go home, and on Sunday (yesterday) I asked to stay one more day.  They agreed.  Last night while in the hospital and on oral heart medication, I had a 52 minute episode of A-Fib with my heart rate between 145 and 155.  My nurse tried to tell me that I was causing the episode because I was anxious.  I didn't feel anxious, but given that she had told me earlier that my PM wouldn't allow my  heart to go above 130 (and she had been a cardiac nurse for 25 years and she KNEW what she was talking about, I did get anxious and confused.  I had been sure that the cardiologist told me that since I had brady/tachycardia syndrome, the pacemaker would ensure that my heart rate would not go below 60, so however aggressively we had to treat the A-Fib, I would run no risk of my heart stopping.  She confused me, and furthermore, for those 52 minutes I thought my PM couldn't be working right.  I was scared that they would have to go in a third time.  The only way they got rid of the A-Fib was with an IV dose of the heart medicine, which they had given me orally about an hour before the A-Fib experience.  I woke up this morning afraid to go home.  The rep from Boston Scientific came to see me, and she confirmed what I had thought was true; protection against bradycardia, but the tachycardia and A-Fib had to be treated with medication.  I saw a Nurse Practitioner from my cardiologist's office who said I could go home, but I wanted to talk to my doctor.  He was very nice about it, but he said I had nothing to be afraid of; that tweaking the A-Fib medication was part of the process, and no one is where they're going to end up eventually med-wise when they leave the hospital.  He assured me there is absolutely no possibility of a life-threatening event (although they didn't start the blood thinning meds until today); and I pulled up my big girl panties (I'm 71, so I've been a big girl for a while)  and was embarressed and agreed to come home.  I googled recovery from PM surgery and was so very gratified to read that I'm not the only one who became fearful about having this implanted and what it means for my future.  I don't feel like such a crybaby now, and I am thrilled I've found this site.  I quit smoking after 53 years five years ago with the considerable help of an online support group, and I'm hopeful that my adjustment to this new circumstance will be aided by this group!  Thanks for being here.


6 Comments

Welcome to the pacemaker family

by cagedliberty - 2020-02-25 02:38:34

Your experience sounds quite rough but I am glad that you seem to be recovering. I am eight weeks post op with a pacemaker and I still have ups and downs as I try to navigate my new way of life. Be prepared for pain to be like a little moody kid. On a good day, it is well behaved and doesn't cause a fuss. On other days, pain is a total brat and throws a tantrum, usually pounding on our chest or arm. 

This group has been a blessing because I don't have anyone else who can relate to what I am going through. When I read about others also going through frustration at not being able to do things like they used to or feeling down, it makes me sigh with empathy. It also gives me hope when I read about people having babies and running marathons etc because it means I also have a good chance of having a full life ahead. I have also made several pen pals here and it feels good to be able to share experiences with people who get me.

Please keep us posted on how your recovery is going and speedy healing!

It will get better

by Gemita - 2020-02-25 07:34:53

Hello DJMurray,

What a journey so far and I am so sorry that you have had so much trouble and had a cardiac nurse who was perhaps less than understanding of your fear in having to deal with AF particularly with a RVR (rapid ventricular response rate).  From my personal experience as a sufferer too, this can be frightening and needs to be urgently controlled, particularly at very high heart rates, since it can quickly wear the heart out.  

Hopefully your AF is well managed now and you are beginning to feel better.  Yes anxiety and stress can be strong triggers for AF but so can just about anything else from the trauma of surgery, to ageing, certain medications (including some antibiotics), dehydration leading to electrolyte disturbances, high blood pressure, heart disease (both structural and electrical), caffeine, tobacco, alcohol and so the list goes on.  We are all looking for our own personal triggers and cause, but AF can start for no apparent reason too which can make it so tricky to know how best to treat it.  But I am sure my heart would have reacted after a double implant procedure and I believe you have done really well to be where you are now.

I found after my pacemaker implant that my many heart rhythm disturbances seemed to get worse initially, due to the trauma of implant surgery, the medication (IV) that was given and the fact that my heart was getting used to being paced.  You may need to be patient but the rewards of pacing will soon be felt.  I have been able to slowly come off my medication used to treat my AF, with the exception of a beta blocker to protect me from high heart rates during episodes of AF.  Work with your doctors to find a suitable medication for you and there will be many to help you keep AF under control.

Although our pacemakers will prevent our heart rate from falling below the set minimum (mine is set at 70 bpm minimum), pacemakers alone cannot prevent our heart rates from increasing when rhythm disturbances like AF/tachycardia occurs.  Only medication can effectively help lower our heart rates.  However, to give you some hope, I have found that my pacemaker by keeping me evenly paced is helping me to come out of many of my rhythm disturbances.  I used to get hours of irregular rhythms and felt miserable with symptoms of syncope, dizziness, breathlessness, chest pain and fatigue.  Now my irregular rhythms are nicely controlled by a low dose beta blocker and with my gem of a pacemaker alone and I hope you have the same success.  My pacemaker was implanted for syncope, bradycardia and pausing.  Keeping my heart rate up is effectively pacing me out of many of my arrhythmias since I appeared to have bradycardia induced arrhythmias.  

Good luck to you and welcome to the Club

Tachy-Brady syndrome

by AgentX86 - 2020-02-25 09:15:02

The above is correct and your nurse is all wet, of you understood her correctly. A pacemaker can solve Bradycardia but it can ONLY make your heart go faster. It cannot slow it down. The upper rate on the pacemaker is the maximum that IT will pace your heart. Your heart can drive itself much faster.

Although it can be as uncomfortable an all get out, Afib itself is quite benign. The problems come in with its side effects. Principally, blood clots caused by turbulent flow in the heart. You need to be on anticoagulants because of this and you should have been put on one immediately. Take it like your life, or worse, depends on it. It does.

The other problem with Afib is sustained high heart rates. This can cause an enlarged heart, which, among other problems, make your Afib worse. Afib is a degenerate disease (Afib begets Afib) but you don't have to help it along. Your rate control drugs are essential to keep the heart rate down. This causes a problem with tachy-Brady because your heart rate can go dangerously low without slowing it more. This is where the pacemaker comes in. It can keep your low heart rate high enough so the drugs to reduce your heart rate aren't dangerous on the Brady side.

RVR brings a whole new threat into the picture. High ventricular heart rates are dangerous and can cause Vfib which, if you've ever watched a medical show on the teevee, is deadly. The drugs that reduce the atrial rate will also reduce the chances of RVR and as a bonus will slow the conduction to the ventricles. A win-win but the atrial rate has to be kept high enough so Mr. Brady doesn't get you. There's that pacemaker thing again.

Antiarrhythmic drugs aren't necessary unless your Afib is symptomatic and interfering with your quality of life. All of them are toxic. The more effective,  the more toxic. It's unusual for them to cause problems short term, so are good to get you out of Afib. The absolute best, and worst, is ameoderone. Short term it's fine but unless you're 85, it's not good for more than six months or so. It permeates every cell in your body, so takes months to dissipate, it also takes a lot of it to do any good. To "cardiovert" people,  it's generally given in a hospital setting intravenously to "load" the patient up. Itcanthe be given orally to maintain levels. It's essential to have bloodwork fairly often to make sure it's not doing damage. Other drugs can be used but are less effective and still need watching. The point is that you need to learn more about your condition so that you can communicate with your doctors and provide an "informed consent". There are risks with all of this. Many here have been through everything you're about to experience and are still kicking. Now that you're on top of things, you're going to be fine but you really should understand what's happening to you.  People here can help. They've been there.

I'M GLAD YOU OK NOW

by rosesophia23 - 2020-02-25 12:28:13

4 months with PM and I still have some pain.Last week I saw my cardiologist because my blood pressure went high for 2 days. He told is not related to the PM ,it's sommeting externe like stress.I am ok now but the questions about my future is still down. I trust in JESUS,he is my only answer.You will be fine.I was a cry baby like you.When I remember the beginning of this journey,it's still like a dream for me. 

You will be ok.Trust God and trust your docteur,relax,enjoy life every time you can.Laugh when you want to cry,go out with family and friends,it's help a lot.And live. I just celebrate my 33 and aiI have 2 beautifull  kids 3 and 6.I try to live.

 

 

Thank you for the support

by DJMurray - 2020-02-25 13:27:39


Thanks so much for the comments, PM new friends.  I will stay close to this site and will be listening, learning and sharing.

My 10 yr anniversary

by heartu - 2020-02-25 17:21:58

Yesterday was my 10 year anniversary of receiving my first pm and I never found out what led to my heart rate going down into the 30s. First year was the hardest, especially trying to figure out why this happened when I am so careful about my health. Once I got over trying to find answers to why this happened I went on with my life.

After a while I never gave any thought to my pm. I think my husband was more concerned than me. Four weeks ago I received a CRT-D, along with 3 new leads. I won't lie; my recovery has been tough, but I dont remember what it was like 10 years ago. I was 53 then and am 63 now. Not on any meds. My bp is normal, no heart blockages, healthy weight, and I exercise regularly and vigorously ( though not vigorously these past 4 weeks). My biggest problem right now is getting more than 5 hours of restful sleep. According to my EP I have venous occlusion in my left arm down through my fingers and while my arm is a tiny bit swollen, my forearm and hand (thumb and pointer finger) are more swollen and a bit painful. 6 to 8 weeks to resolve - hopefully gone soon.

I look at it this way. This is my only health problem. I have relatives and friends dealing with a great deal more. I am strong enough and with support from family and friends I will persevere.

 

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