from Jodi

Would you like to know the benefits of a pacemaker?

by Gemita - 2024-02-13 14:38:37

Jodi, I see you have created multiple accounts now and I really don’t know who you are any more?   Are you still using FEB2924HEART account or were you unable to login under this user name?

I have tried to reassure you privately as have other members.  I don’t know what else we can tell you? 

If you can only see the disadvantages of having a pacemaker you need to speak to your team quickly for guidance before you agree to a procedure that you might later regret.  However, since you have 3rd degree heart block, it would appear you need a pacemaker.  

Leads may last for 15 or more years and replacement is not a major life threatening procedure, particularly if carried out by an experienced surgeon.  Sometimes they leave an old non functioning lead in place and place a new one in the same vein if there is space.   

Your large breasts will not be a problem or cause difficulty.  You just need plenty of padding and pillows to cushion them to make you feel comfortable while you sleep at night and hopefully for a short period until you heal (at around 6 weeks). 

It sounds as though you will need some professional help for your fears of what “could happen”.  We could all focus on “what if”.  I would rather focus on the benefits of a pacemaker and improvements to your quality of life and there will be many.  Would you like to start a new post on what benefits you can expect from a pacemaker?

Healing Leads

by Julros - 2024-02-13 15:18:18

Hi Jodi, 

I suggest sleeping in a recliner, if that is possible. Also, use pillows, to prop up your arm, shoulder and breasts as needed. 

The scary stories about lead replacement are just that. There have been amazing advances, and you may never need lead replacement. 

I have had a lead removed, to upgrade to a defibrillator coil, (my choice) and it went smoothly. They took precautions, were prepared fot adversity, but nothing bad happened. 

You make have trouble tolerating a bra initially, and a front hook bra may be more comfortable. I left the strap off my shoulder at first. 

A decade in the future

by Lavender - 2024-02-13 18:12:05

Lol! Worrying about a decade in the future shows me how positive minded your subconscious is!  You're already anticipating a replacement in a future decade!  Let's do one day a time. You're going to be ok. 😉

Nerves

by Penguin - 2024-02-14 09:54:17

Hi again Jodi, 

It's OK to be frightened. Most of us felt that way when facing our first implant. It's also natural to question excessively if you're very scared and to worry about the future and what having a pacemaker may mean. 

There's a lot of misinformation around and sometimes rare events (like lead dislodgement and premature lead replacement) can seem to be more frequent than they genuinely are.  Online forums make it easy to research these issues and clearly people who have problems with their PM are more likely to use a forum than the vast majority who are able to lead a normal, healthy life with a PM.  Try to remember to press your internal 'edit' button when looking at online information and listening to hearsay and the accounts of others because most horror stories are not common. 

Large breasts which shift when you move / exercise / lie down are more likely to affect your scar than your leads. The weight of your breast tissue can pull on the scar and this causes concern for some women and sometimes discomfort. The leads don't get pulled by the exterior shifting weight of breasts. 

I found that a very soft sleep bra (supportive one) was most helpful to stop any tugging / pulling whilst the scar was healing.  Btw. my scar (on the outside) had healed pretty well within a week or so and scar tissue had formed.  Yours should heal similarly. 

Please try to take this one step at a time. It's new, it's scary but unfortunately it's also necessary.  You will be ok but treat yourself gently whilst you get your head around it all. 

Best wishes.

I know exactly how you feel...or close to it.

by R2D2 - 2024-02-14 13:09:00

Jodi, pretty much everyone in this club knows that if there were a medal given out for how nervous people can get with the impending pacemaker thoughts, it would be given to me, hands down. Some of it has to do with my personality, and then there's the fact that I literally research things until my mind is fried. But I have never been told that I am not thorough about it. LOL!

My point is, you have every right to be nervous and scared and stressed about this procedure and the implications the device will have on your life going forward. It's a serious decision that shouldn't be made lightly. If you NEED it, then you need it. So... like me... you feel like it's not exactly an option, rather a "do or die" situation. I didn't want my CRT-D but with an ejection fraction of 16, and the fact that I didn't get any real improvement from medications alone, I felt as though my hand was forced. I could either get the device and hope it helped, or do nothing and basically wait to die. So, after discussing my options thoroughly with my Mom, daughters, and spouse, I opted for the device.

Now... that being said, it's weird. The whole experience is weird. The surgery for me went well, even faster than predicted and I opted to stay overnight which was a good thing for reasons I won't share here. Then I stayed with my brother and his wife for a week because I traveled 4 hours to get there and thought a week of rest before I traveled back would be smart... also glad I did that. 

I'm 58 years old, have only had one other surgical procedure in my life, that was my appendix at the age of 16. So I was scared out of my mind with the "what if's"... but it was actually a lot easier than I thought it would be. I had a great team, a super nice nursing staff, and the hospital was so accomodating, it seemed like a dream. That is until I went home and discovered that the pain was more than I bargained for and if not for some pain meds I had saved from a tooth being pulled two weeks earlier, I would have been in bad shape. Ibuprofen was NOT enough for me, but then I'm a redhead and I hear that most pain meds don't cut it for us fair skinned creatures. 

After about 3-4 days, I no longer needed the heavy pain killers but was grateful I had that option. The healing process was interesting in many regards; I felt the "pacing" and it scared me. No one told me what it was, how it worked, or that it was normal. So I had to find answers. I came here because there really isn't a better source for information coming from actual people with these devices in their bodies. They have been my light in the dark. You can literally ask anything and you will get kind responses from people who know first hand. 

It's been about 7 months with my device and I still feel pain where it is beneath my skin. Nothing that really bothers me, but I know it's there all the time. I'm not a very good example though, I feel all kinds of things most people don't. That could be the whole "redhead" thing or it could just be my particular package. At any rate, don't expect to feel a certain way at a certain time. Let your body tell you what it needs and go with it. I have a pretty large chest as well, and it has been interesting finding my way back to a comfortable night's sleep, but I did it. I found that propping my left arm on a cushy but firm pillow helps tremendously. I don't let my arm drop in front of me when sleeping on my side, and that keeps my device happy. Otherwise I wake up sore. 

We are with you... so if you need help or answers to your questions, just let us know. You can do this because I did... and I'm a big weenie. LOL! 

Janene

Janene

by Charbookles53 - 2024-02-16 20:12:31

Thank you for your experience. I too feel what other people consider minor pain to be excruciating, then, im labeled a drug seeker!! Really?? Ive rarely ever taken opioids in my life, last I remember was after a car accident at age 16 and after my PM surgery I was given a shot, at the time, I really wasn't having much pain and even said so and the nurse said , well you should take it because once we move you to the recovery area, where I stayed for 6 hours, I would only be able to get Tylenol. That's so confusing, they label me a drug seeker, I tell them I really didn't need a shot at that time but was told I should take it, seriously?? I never ask for pain medication, after my hysterectomy, when I was discharged home, I dealt with Tylenol, I cannot take Ibuprofen due to kidney issues. It was terrible to say the least! But it was my choice, I have a family history of alcoholics so I don't want to be addicted to anything. Back to the point, lol, your message helped put me at ease, Im 6 months post op with my pacemaker and it absolutely has been hurting so badly I have been in tears sometimes. I have a very difficult cardiologist that doesn't answer questions or give me information, in and out in 2 mins, I timed him! He has ignored my concerns, the nurse writes patients complaints of pain and everything I say but I read online in MyChart the doctor writes patient has no complaints under what the nurse wrote!! He writes lung sounds are clear, heart beat regular, abdomen soft and non tender, this cardiologist has not once used a stethoscope on me, never has touched my abdomen, how does he know I have clear lung sounds and heart rate SOUNDS regular when he doesn't listen to my heart or lungs!? I had bradycardia with a heart rate in the 39 area and was passing out and after 2 years finally got my pacemaker but was given zero information on what to expect, what exercises I could do to not get frozen shoulder, what's normal or what isn't normal and I've just been frantic and filled with anxiety!! My pacer literally feels as if it's going to poke through my skin now and it was never that way before, I know this most likely will not happen, lol, but it is sharp in 1 area. I just now found this forum, thank God. I research everything! My PCP advised me to stop googling because that is the cause of my anxiety, well no, my cardiologist not answering my questions nor feeling the area where my pacer is and writing things he never did down on my medical records is what caused my anxiety!  My PCP is wonderful though, he felt the area and told me the catching feeling I was feeling when I would lift up from a lying position is scar tissue catching under my collarbone, my pacer is about a quarter inch down from my collarbone and I know it wasn't that high up to begin with but x-rays show it's in the proper area, at the time my PCP felt the area the sharp area wasn't there. He told me to never let anyone tell me what I'm feeling is in my head, he said I know my body better than anyone, his advice was for me to be more assertive with my cardiologist and demand answers. I touched my incision site just last month and my cardiologist basically yelled at me don't touch, don't touch?! It's healed, my hands were sanitized anyways!  It's very scary for us and having a very uncaring cardiologist is extremely frustrating. He says the numbers are fine, the transmissions he gets are fine, then I said well im sorry for being a worrywart, he said you should be a worrywart, wait what?! Why?! Walked out of the room. Unfortunately, this office is the only one in my area that takes my insurance and the practice will not allow me to see another cardiologist in this office which is absurd. But thank you for your information, I'm going to stop worrying so much, I do want an explanation for the pain that I consider to be a 7 out of 10 but am told im exaggerating. 🤦 You did put me at ease, maybe with the scar tissue and healing process that is what is causing the pain. God Bless! 

Leads replaced

by Finn - 2024-03-01 09:13:19

I will stay away from the breast issues being a 60 yr old male.

i had to have my leads replaced after 8 years, implanted,2009, replaced 2017.

i won't lie, it was a longer recovery period but mine were fractured and had to be replaced. Need a Dr that does many of them each year.

Hopefully yours will last 25 years.

my leads were from St jude, tendril was the manufacturer.

good luck , Finn