Milestone and adjustment

Personal experience

by R2D2 - 2024-01-20 15:07:44

I don't know how others will respond to this question, but for me, I let my body decide. I can tell when I've over doing something (usually) and I back off. But my EF is 16 so it's pretty easy to tell. As for exercise, I just do a small amount, maybe not even enough at first but if I push it, I can be resting for days. Right now, I know I can only walk on the flat, no hills, or I will be winded super fast. I found out that I can do 2500 steps a day without feeling like I did too much, so I just do that. Hopefully soon, I can increase that amount. I'm sure an athlete would chuckle at my meager efforts, but chest pain and tightness with out of breath isn't at all enjoyable and my cardiologist says, if it's hurts in your chest, rest. Again... I have a super low EF so the rules are a bit different at this stage in the game. I'm just grateful for being able to vacuum and do laundry again. LOL!

Personal experience too

by Gemita - 2024-01-20 22:54:26

Pacer2019, I guess “how much exercise is enough and how much is too much” is a fairly straightforward question.   I agree completely with R2D2 that we should “listen to our body” and we won’t go wrong.  We should exercise according to tolerance and comfort and build up “gradually, safely, consistently".

For example, many of us do too much one day and then nothing the next day which isn’t helpful when we have a heart condition or another health condition.  We should start slowly and build up gradually and learn to “pace” ourselves more too, especially with a heart condition.  Learn from experience what will work best for you, what is likely to trigger an event like an arrhythmia or other symptoms, or worse, a defibrillator shock?  I hope it never happens.

So maybe you will be able to continue with many of your activities, but at a slower, steadier pace until hopefully that extra lead works its magic on your ejection fraction?  When in doubt, perhaps you could work with a cardiac therapist to learn what you can "safely" do.  

Did you check with your driving authorities and doctors that you are safe and authorised to drive so soon after your defibrillator implant?  I believe here in the UK we have to wait for one month and up to six months if the defibrillator was implanted for a dangerous arrhythmia, although in your case, I see you have a defibrillator for your fall in ejection fraction (heart failure) possibly as a result of being single chamber paced leading to dyssynchrony between the left and right ventricles?  Anyway, worth perhaps checking that you can safely drive?

But great news so far and pleased to hear you are healing nicely

good point

by Pacer2019 - 2024-01-22 13:26:50

Here I read if you have a CDL the wait to drive is longer... up to 6 months. My doctor told me I could drive in a couple of weeks.. so i did. Just up the road couple of miles mid day.

I have heard that idea that single wire pacing  did harm. One doctore said it happens in 20% of cases.

it is water under the bridge but I feel like that would have been good informstion when they initially implanted my PM 3 years ago?  

What harm would it have been to have installed what I have now then?

With this impmat the symptom  that took me to the hospital was a contant haeaviness across my chest... not "chest pain" but pressure.  I compared it to when the dentist puts the lead shield over you for X-rays.  

It wasnt exercise induced but pretty much constant.  I had a theory that if blood flow was causng the discomfort it woud be depriving my heart and it would deteriorate - was taking Tums and advil if it really bothered me as I waited to get the ne install.

Now that this incision pain is going away this heavy feeling is gone so far ... no light headedness when i move around or presure.

So..... must have indeed been my heart not distributing blood? 

Hope you see real improvements quickly Pacer2019

by Gemita - 2024-01-22 14:32:33

I agree Pacer2019, it would have been good to know about the potential risks of a single lead pacemaker.  My husband has one, but he is much older than you and in permanent Atrial Fibrillation. 

I was told by my EP that they would upgrade my pacemaker to a CRT device should I ever develop heart failure from right ventricular pacing.  Fortunately I am mainly atrial paced so this won’t happen unless my heart condition changes.  I can remember thinking why don’t they give us all a more natural form of pacing from the very start, but of course like everything in life, there are always risks involved and CRT devices are larger and certainly more difficult to implant (particularly the left ventricle lead) so they hold off whenever they can.  There is also the matter of cost over here in the UK with a free health service.

Of course Pacer2019, some members here are paced in the right ventricle 100% of the time for years and never ever develop heart failure, so you have been unlucky if indeed this has been the cause for your fall in EF.  You should soon know if you see an immediate improvement with CRT pacing.

I agree, whenever I get chest pain it is because my circulation to the heart and other organs is adversely affected (particularly during an arrhythmia at high heart rates when I can really struggle).  When the arrhythmia stops and circulation improves, my chest discomfort eases.

Hopeful!

by Pacer2019 - 2024-01-22 14:58:17

This new pacemaker is MUCH larger - still a discussion I would ike to have been a part of abiut the single wire!!

I am a believer that if it is a cost issue tell me the facts ...maybe i can come out of pocket with the difference.

When this all started I showed up for a schedued echo bcardiogram.... The chek in person said it had not been approved and I would need to call my isurer... i walked away to figure it our and reschedule. As i walked i felt terrible - light headed..legs were heavy.

I turened around and went back ...pulled out my credit card. $2500 is nothing compared to dying !!! 

The found a blocked artery and stented me- the hope was my EF wouldincrease put it didnt- so here I am rewired and hopefully back in the game soon for another run!