Pacemaker recipients: Looking for support from others

Hi Joanne no problem I myself enjoy sharing . Just for a quick history what started my issues was a flu virus that effected my Heart. What happen was the sac around our Heart and Lungs started filling up with fluid. This was 2008 and when due to the heart trying to pump blood against all that water it got enlarged. Well the heart is one organ we don't want large and that's what started my journey. When they finally got me dried out my heart was at 5% EF and a pacemaker was recommended at first just as a percaution. From 2008 until 2010 my heart regained strength and at its peak was about 50%. My biggest problem was electrical as later I found out when I got my first shock in 2011. So it did drop to about 30 % towards the days of transplant but that wasn't the main reason for the transplant. I was on 2 drugs Amiodroine and Mexiltine mostly to control my rhythm and with a couple of successful ablation was doing well. But it was one not successful ablation by a new doctor who I found out did not give me the greatest advice, that was 2015. He wanted to try and get me off the meds but it didn't work and I don't really want to dwell on what could have been but that's when the shocks and arrhythmia made life more challenging. Was alcohol the problem or an over zealous doctor I may never know but ultimately I'm kinda glad I went thru it and now with the new Heart my life is pretty good. The other factor was the Amiodroine. It was the goto drug for VT arrhythmia but with long term use can become toxic. And that did have just after I was put n on the transplant list. I finally got listed about December 26-28th I believe but on New Years eve I had what they thought was a stroke. Come to find out it was the heavy IV type Amiodroine that caused me to go into this very strange dream like state. So that incident raised me from level 2 n on the list to 1b. There are like 7 levels with the top one split from 1a and 1b. So I was put at 1b. Jan 5th my heart became available and so basically I was on the list less than a week. I won't elaborate unless you want me to on how much of that period strengthen my faith.
So moving on to what i did, I was a communication Technician for the power industry and it was felt that with the transplant and the recovery from that I would not be able to meet the requirements of that job anymore. The job description ment I had to be able to climb up to 300 ft towers. And work mostly alone on the road all the time. I really loved the job but now I'm convinced it was all in the plan to be exactly where I am now. So based on that I got an early retirement from both my employer which was the federal government and disability from social security. So I have to go for now Zoom meeting with my grand kids but can continue later.

Thank you so much for all your encouragement. I know God is with me . I can’t say that I haven’t thought about that but I don’t want to go to hell. Lol. I m getting some of my faith back I know God know what he’s doing. I’m just a basket case right now. If you don’t mind me asking what was your ejection fraction when you got your new heart? Did you have to stay on the list for awhile? That alone would also be very scary. At this time the doctor told me I was sitting at 30 percent. What kind of work did you do before you had to retire? Thank you so much. Sorry about all the questions

Hi Joanne, yes I do know about the 3rd lead as I had one from the beginning and I'm thinking that one is the one that can be helpful to pace you ot of a VT. The watchmen I never had one of those and since I didn't have afib I wasn't on a blood thinner. The additional wire will be similar to when the placed the pacemaker, but I believe with less recovery time but I would plan on a similar recovery that you had after the initial pacemaker procedure. I can definitely relate to fears doing certain things for me towards the end mine always seem to happen near midnight which gave me anxiety going to sleep. My first shock ever was while I was driving and for probably 2 months after I had a lot of fear driving. I did finally get over it and after a few adjustments it did get a lot better for almost 10 years I had very few problems. But then my overall heart itself got worse and in case your wondering why I talk in past tense I ended up with a heart transplant. That came with a new set of issues and made me have to retire but I'm stating this for you to realize there are options going forward.
Also on the settings originally they had mine to go immediately to shock if my heart rate went over a certain level and that was my first shock but after that with the adjustments and a different doctor plus 2 ablation a year apart my life became very normal and for about 6 years only a few issues that required adjustments. I did have 2 sets of shocks but years apart so it was easier to tolerate. It wasn't until my heart got even worse that we had to look into transplant and that part is I believe more of a spiritual issue than anything. I believe God had a different route for me but he used this period to wake me up. Like I mentioned I was at this point still drinking and now I believe he needed me to stop. That was 2015 and I had a really bad incident 8 shocks between my house and the hospital until they got enough drugs in me to stop the arrhythmia I quit drinking as of that incident and if I hadn't I would not have gotten my transplant in Jan 2018. So now I was forced to retire at 58 I'm 62 now but it all worked out and I was able to do what i believe God had in mind for me. I'm not trying to push my beliefs on you but wanted to share what motivated me to now be much happier than I was 7 years ago when I had that incident in Dec of 2015. I can relate to why suicide seems at times to be an option it did run thru my mind that day in 2015 but someone(God) wouldn't let me go that route. So I'm sharing this in hopes that you look past this period and realize there are more options to look at.

What are the indicators for a pacemaker?.

Thank you so much. Im so glad you replied. I failed to mention I also have v tach / v fib. I went into now afib which my heartbeat got over the setting of the defibrillator which made it go off. My doctor has talked about adding a watchman to help me with the blood thinners, adding a third lead to the defibrillator and a av node. Do you know anything about these procedures?
I freak out every night when getting into the shower it’s like I have a full blown anxiety attack. After being a police officer for almost thirty years and only 52 I’m not ready to retire. Thank you so much for understanding. I know God is in control but I’m so afraid that life is over for me.

Hi Joann, yes I will try and I can completely understand the anxiety. Not a very fun place, I too had my moments. I went thru a few times where I felt the shock wasn't quite as bad as the anticipation of it. I remember thinking would it be better if I knew when it would happen or just have it surprise me. I remember tho in talking with my Doctor who handled that area, we addressed it from 2 approaches. Medication and pacemaker settings. And for quite a while we were able to find settings that at least would try other methods to get me out of an arrhythmia besides shocks. So that would be my first advice is for sure discuss you anxiety with your doctor . mFor me finding one that was very familiar with my type of heart issue did wonders with both settings and medications. These types of heart rhythm issues have different EP doctors some specialized in upper areas like Afib or lower areas like VT or SVT. So if your doctor is not as familiar with your particular case maybe they can suggest one. I had an afib doctor once who did just that and suggest a different doctor for my case.

You mentioned an ablation which for me was also very helpful.
Now I have to tell you I know based on a friend of mine afib is different than what I had which was VT for short
Mine was a type of arrhythmia that unless treated within a minute or two can be deadly so shutting off the defibulator was not an option except in the hospital under constant monitoring. But what my friend told me about afib is usually its not life threatening and he always had time to actually call his doctor and if a shock was necessary could go to an ER and get converted as he put it while sedated. Not sure if that's an option for you but depending on your situation maybe a possibility. Another great question for your doctor.
The last thing I learned to do was some relaxation and Manuel methods to stop an arrhythmia. It's a technique actually that if your ever having a heart attack can help so it's great to remember. There are 2 methods of which I have used both. 1 is to cough very violently and the lung action can actually put pressure on the heart and stop an irregular heartbeat. The other is something they teach pregnant women to be ready for child birth where you tighten the pelvic floor muscle to get it stronger. I know it has a name but can't think of it at the moment but that also can put pressure on the heart and stop an arrhythmia. Now the other 2 things have to do with diet and depending if they are occasionally or more regular can have a bearing on heart issues. Alcohol and smoking which I was doing both at one point. But also even excess coffee. And for relaxing So I'm a man of Prayer and that's also my goto way of relaxing. But anything that can help you relax is helpful also. I hope maybe some of these are helpful and please let me know if I can help further. I've been there and completely understand how scary it is. At least for me I really never got used to the shocks but knew they were saving my life. And for me led to seeing my first Great Grand daughter born and help me to quit bad habits that now are history and feel so much better for it. Hang in there and keep trying to find the right settings that work for you. I ended up going with a pacing setting first that tried to get me out of an arrhythmia but also acted as a warning that if it didn't work at least it gave me time to get in a more relaxed position to be ready for the shock. Mainly if I was in a dangerous situation like driving I could pullover or if standing at least sit down . Please let me know how I can help further I really do understand.
Blessings

Good evening, after seeing your post that you have a pacemaker and defibrillator you got my attention. I just need to talk to someone. I have both as well, a couple weeks ago my defibrillator went off 5 times while I was taking a shower. I stayed a week in the hospital on blood thinners and waiting on an ablation for afib. Since this incident I have been very depressed and full of anxiety, so bad that I have thought about having the shocking function cut off. I am so full of anxiety I feel like I’m losing my mind. Do you have any help advise.

Thanks for your input. The pain is in my shoulder and left arm. There is no relation to the total knee replacement (TKR). I do have follow up from my electrophysiologist and have a home monitor, which is checked automatically. I have regular follow up appointments. Regards, Pat

Hi @pngbee74 Welcome I see your experience some pain in your arm? Interesting I had a pacemaker with defibrillator for about 10 years and can't say I had any pain in my arms. Does your pacemaker so a defibrillator? The kind of pain your describing sounds like a shock but at.least when I had to gets delivered a treatment It was brief and in my chest. I noticed you talked about TKR in another post could it have something to do with that? I'm not familiar with that problem but I also know that pacemakers usually only can affect the heart area . I have heard of people complaining about a strange sensation from the leads of the pacemaker but usually there in around your heart area. The only problem I remember is an itchy type feeling at the pacemaker location . But I also know any issues with the pacemaker itself will be recorded on the device and the EP doctor can check that when they download the pacemaker. Let me know n if I can help further and what type you have.
Blessings

Is this group still active? Have had a pacemaker for 2 years. Initially no problems, but now I have terrible pain in my left arm below my shoulder and above the elbow. I have been to 3 orthopedists and my electrophysiologist. They all recommend PT, which I am receiving, but I do not think I should have such debilitating pain. I can't get anyone at Yale New Haven Hospital to help me. They ALL say it's not the pacemaker, and I think it is!! Whose body is this??? I had a pikk line for chemo in this arm (left) 15 years ago, but now I get debilitating jolts of pain that take my breath away. I'm at a loss as to what to do next. Any thoughts??? Thank you. Pat