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Get the PM

by Good Dog - 2016-05-26 09:05:55

I can identify exactly with what you are going through and how you feel. I had just turned 38 years old when I had my PM implanted. I was fit and active. However, I wasn't given a choice to get a PM. They put me in ICU and told me that I was getting one.

So here is the straight scoop. I was scared and got really depressed immediately after the implant. After about a month when my doc finally told me that I had no restrictions I made the decision that I would live my life as though I did not have a PM. I began playing competitive basketball about 4 months after the implant and then went on to play baseball in a league through the summer. I continued playing organized softball (baseball) every summer as I got older. When I hit 50, I decided that I would try to really get in shape. I started running and doing lots of calisthenics (up to 400 push-ups every morning).
I am now pushing 68 years old and just saw my cardiologist today. He said that my recent Echo showed that my heart is still pumping as normal as someone without a PM. I am now on my 4th generator. Each one lasted on average 10 years.
I am here to tell you that I understand your fear, but if you really want a high quality of life including working-out as you had been, then I would get the PM ASAP. It is a safe, quick and simple procedure. My PM has given me a completely normal life in every way. While you may someday be completely dependent on it, so what.............if it gives you a high quality of life. I am here to tell you that it will!
Don't let your fear hold you back. You won't be sorry. I am confident that there are lots of folks right here in this forum that will tell you the same thing.

I wish you the very best!

Sincerely,

David

BTW..........

by Good Dog - 2016-05-26 11:05:03

I forgot to mention that your rationalization for not getting a PM is incorrect. First, the likelihood of your battery failing without warning is about 1 in 1 billion. While the chances for a lead failing may be slightly greater, they almost never fail without some warning.

The point here is that even if either or both of those things happened (which is almost impossible), but even if they did, you would not die. You see, everybody has what is called an escape rhythm. Even if you are 100% PM dependent and it fails (again, almost impossible), your HR will be somewhere between 20 and 30 bpm. You won't feel good and may even pass-out, but you will not die.
So stop looking for excuses not to get a PM. There really aren't any good ones.

Sincerely,
David

blacking out and replacements

by Tracey_E - 2016-05-27 11:05:06

You want to do it BEFORE you black out, not after!!! Unless you happen to have a crystal ball to tell you when it'll happen. What if you are driving with your daughter at the time? Not safe.

I mentioned above they always check my underlying rate before a replacement. It takes a matter of seconds between the time they disconnect the old and when they connect the new so usually they don't do anything about temporary pacing. A very very few doctors will hook up a temporary pacer which is threaded through the groin for the duration of the surgery. Even when my rate was 20 the day they checked it, my doctor has never done that. They use giant sticky pads attached to an external pacer, same as an ambulance would use. I have no idea if they ever paced with it because I don't remember anything about any of my replacement surgeries! I mostly remember trying to scrub off the sticky when I got home lol, that's about it.

Replacements are super easy. Everyone always worries over that first replacement, then they see how easy it is and don't bat an eye at the next one. We get lots of warning so plenty of time to plan it. I got my last one in Feb, was out walking 3 days later, chomping at the bit to get back to CF a week after but they made me wait 4 weeks (infection risk, nothing to do with the pacer). Easy!

pacing

by Tracey_E - 2016-05-27 11:05:36

As the others said, they do not just die/stop/malfunction. And I don't know why your doctor would say your heart would lose the ability to beat on its own after being paced. Odds are, if you turned it off, you'd go right back to how you are beating now. Most of us do. Nearly everyone has some type of intrinsic underlying beat. I was born with av block, rate in the 40's most of my life, then it dropped to the 30's. When I get a new device (I'm on #5) they always briefly turn it off to see what my heart is doing on its own. My rate has been anywhere from 20 to 60. So, even if my pacer were to suddenly stop, I'd still have enough heart rate to keep me alive. I'd feel like crap, but I'd survive to get it fixed. That said, that simply does not happen. They are high tech computers, way more dependable than our wonky electrical systems.

Infection risk is pretty darned low, too. They take all sorts of precautions now that they didn't do years ago. In all, ALL complications from the tiny to the serious combined are less than 1% of all implants. You are young, strong, and otherwise healthy so you have everything in your favor. This is a piece of cake.

I would highly recommend not taking the wait and see approach. I tried that one and wish I hadn't. First of all, in hindsight, I didn't feel nearly as good as I thought I did. Once I had a normal heart rate, I realized just how worn out I was before, how often I begged off something because I was too tired or dizzy. I still ended up with the pacer in the end anyway, and it turned out to be nowhere nearly as bad as I'd built it up to be in my head and I felt great after. Why suffer and drag it out and lose the ability to do the things you love when there's an easy fix? And last reason not to procrastinate, one day my rate tanked. My fingernails turned blue and I thought it was funny, it was like being drunk so I never considered I could be in danger. I had called my doctor about something else and mentioned the blue nails, he said get straight to the ER. I still didn't take it seriously and drove myself, how I got there without passing out I'll never know but my rate was 22 when I was admitted. I ended up in emergency surgery, freaked out my family, no time to make any plans. Better to do it on your own schedule and make informed choices before it becomes urgent.

Talk to them about where they are going to put it, make sure they are aware of your activities. Many like to keep it simple- just under the skin, just under the collarbone. You may find it gets in the way when you clean the bar and other upper body moves. If they go a little lower and a little deeper, or put it between the pectorals, it'll be better protected and less likely to get in your way. My doctor chose to bring in a plastic surgeon to assist with the placement. He understood my desire to have it out of the way, but his specialty is the heart and he didn't want to mess with it. Easiest job of the day for the plastic surgeon and I'm very happy with the placement. Everyone was happy :)

I have done CF for the last five years, as do a handful of other members here. I do everything the others do with my doctor's approval, no limits or restrictions. They may not like the idea of you sparring or playing rugby, but other than full contact sports, pretty much anything goes. There is a company that makes shirts with a cup that protects the pacer meant for contact sports, that may be an option. Think outside the box if you have to and be open with your medical team about what you want, but this is simply a tool to get you back to 100%. It's not what any of us would choose, but it doesn't have to be a big deal either. Most of us heal and get on with our lives. It's always there, but as we feel better and get back to being active, you'll be amazed how quickly you stop thinking about it all the time.

If you have questions, please ask away! I know it's scary. I know it's not what you want. But I and many here have been in your shoes and it's not as bad as you think it is.

Just do it

by Zia - 2016-05-27 12:05:48

As David said, even if it failed you won't just die. There are all kinds of backups and safety functions. Without the PM you have the chance of getting a light headed spell or even passing out at a time when it could be fatal, like driving a car or operating a machine. This could endanger somebody else as well as you. I doubt if you want that. You may need to talk to a different doctor who can explain the situation better. If you are in complete block, the sooner you get the PM the less danger of your heart giving up on its own. - Don't mean to try to scare you since your doctor seems to have done that already. But getting the PM isn't a big deal and you'll feel a lot better for having its help.

Thanks Everyone

by MattJ - 2016-05-28 08:05:59

Hi Guys,

Thanks to everyone above who took the time to reply it means a lot to me, I am quite fortunate that I have a job that I can work from my desk at work or from home remotely with very little physical activity and that I could car share with a colleague so didn't have to drive although for the first few weeks I did as I felt a lot better than I do right now. even more so Ironic is that I work for the NHS in IT clinical systems and cardiology is one of my areas I support.. go figure huh!. quick update, yesterday afternoon my symptoms got worse, felt a lot more dizzy and lightheaded etc. so decided to get checked out, the cardiologist advised that with me being more symptomatic that there was a bed free on the cardiac ward and I should take it, so here I am all hooked up with my stats being monitored all weekend with a planned date of this coming Tuesday depending on the list, if not 100% Wednesday for my PM implant. I spoke to the cardiologist with my goals regarding training and my general active lifestyle once recovered and one thing they said was press ups would be ok but bench press no? and that all cardio was acceptable. anyone has any thoughts on the bench press part? anyway I'll let you know how it goes.. wish me luck :-)

Matt

How are you doing, MattJ

by idgie - 2016-06-06 01:58:14

Hope everything went well. I'm an old poster who had to take some time off due to family situations, but wanted to check in and then read your posting. Also wanted to add that the advice given to you here was top-notch. I also had no choice when I was fitted with one four years ago, and I have not regretted it.

Take care and, if you can, let us know how you're doing.