Back Again, Issues still

Hi everyone,

Well its been two months since I had ablation that did not work, pacemaker implant rule medtronics.
After one month of short of breath went back again to EP and finally got his attention,it was a slow day for him. HR was set at 70 I was sob sweating and just pooped out by two pm, he said I was pacing at 80% so he dropped me back to 60.
This time I waited thirty min in the office to see if there was a immediate change before I left the office. I felt better.. At least I stopped sweating.
Few things I do not know if this is normal for me having this PM now forever or its settings.. He the DR says the settings are just fine..

1. I am still short of breath on and off , I was not before all of this.
2. My stamina is low, if I work out its tough And I tired easily, before pm I took off.
3. A biggie!!! My HR IS speeding up and down. 67 then 100 now I know this is not fast however all day makes me very tired, then Yesterday I was at the gym on the elip machine doing my three miles.. I finished and slowed down watching TV and pow! HR went up to 170 ,I almost did not make it to the desk. It finally reset. So I decided while waiting for hubby I would lay down and do some very easy sit ups. Boom HR took off again for 67 To 170 , this time I was in the back room and almost totally fainted trying to get help at the from desk, as you all know who have fast HR you can't breathe..

So here I am was all excited that the PM would make my life better except I seem to be having these issues. I know many here have much worse than me ! However this is third ablation,one cardioversion, one pm , ughhh I just want to feel normal.
Am I still healing??? Is this the issue???

Well that is my story my friends..
On the other side I hope all of you are well and life Is treating all of you great..

Sorry for spelling! I am on my tablet can't see it real well.

Best Cynthia

10 Comments

Fast heart rate

by Theknotguy - 2014-02-16 11:02:59

I've got the a-fib where it occasionally goes real fast. They call it a-fib with RVR. Problem being if my heart goes too fast for too long it will kill me. So...

What they did was to give me Cardizem and Metoprolol to slow the heart down. Then use the PM to pull my heart rate back up into a "normal" level.

But as active as you are, I'm not sure if that would help. You might have to give up some of your higher level exercise.

I had a lot of trauma so my body hasn't settled down and it's been over four months. They just made a change to my PM last week because of a-fib sessions. They turned on the Atria Preference Pacing. While that may not sound like much, I've got a whole new set of sensations.

SOB? Am finding out I'll be SOB especially in the cold weather we're having now. It has to do with the PM leads causing a lower EF. So when the cold air constricts the blood vessels I just run out of air. They tell me this is something with which I'll have to live. Don't like it but it's better than being dead.

In cardio rehab they're having me work up to angina, then back off and work at a lower level. It helps me push up my angina level. I started having angina at 110 bpm but after several weeks of cardio exercise it's now up to 115 bpm. Once again, doesn't sound like much but they have me on meds to keep the heart rate down.

Overall it still is taking me a long time to get back to a "normal" level. They're telling me, because of all the trauma I had, it will be a minimum of six months before I'm starting to feel somewhat normal. Then a year before I'll really start to feel "normal". I've even had some doctors tell me that one year is aggressive. You've only been going for eight weeks.

Heart disease teaches you patience. You make a change, then have to wait days, weeks, or months to see the effects. Make another change, wait days, weeks, or months. Make another change - you get the picture. Sometimes you just have to wait to see how things settle out.

Hang in there. Life does get better.

Theknotguy

Fast heart rate

by Jackcouo - 2014-02-17 07:02:26

Hi Cynthia
You say you have had 3 ablations that have all failed to cure the afib. Have you considered a Thoroscapic Minni Maze? I had 3 failed ablations plus many, many cardioversions then the minni maze. It cured the afib for two years then I had to go back for a touch up ablation (not uncommon) and now I'm in nsr with to meds. I also have a pacer for brady. I'm still working on getting the pacer setting correct. I'm a cyclist and my heart rate goes up to 170 and stays there for long periods of time while I'm ridding. I do get short of breath but can usually ride through if.
I hope you keep us informed of your progress as I am interested to see if some of the things you come up with might be helpful for me.

Jack C

JacC/knot

by cindyredd - 2014-02-17 09:02:12

Hi Jack,
A few years back I went to a big doctor in tamap , he wanted to to the maze and allot of other stuff, scared me half to death.. I set up all the appts. And then backed out.
Had he approached me differently I would have gone through with it .however he was a very Frank Dr and focused on all the gory details. And I just was not mentally ready I guess.
I coasted along for two years when I has a TIA doing yoga in my living room.
Again I went to a cardio who took me in for another ablation. This time it was induced Aflutter about 360 and was cardioverted. I felt pretty good for about two years when it happened again.
As you know when we have this we know what it is,feels,etc. So back to the same DR who did the AF ablation and he was like well what do you want me to do? Your to young for a PM, we can do in again.
Once again I was defeated. So I just let it go on for another two years.
Then once again problems, I had a tilt test done was pos for vaso vagle/bradycardia/aflutter/ .

Then I fought a bad flu and lost my hearing in my left ear lol with that came tinittus..!!! Ring ring ring ...all day and night.. Hence to say thank god I have a good sense of humour of I would be insane by now..

So I trotted along daily pretending I was just peachey . when I was at the gym doing burpies and pow again..

New DR put in a loop recorder for a year and finally caught the fast. ,forward a year PM and ablation 8 weeks ago.
I was very bummed that he did not find the fast hr.. As knit knows I was hoping for a trifecta. Well that did not happen.

So 8 Weeks out back to the gym, running on the slip machine Sunday boom. 170,and almost dropped dead..
So tmr off to the EP Dr. At this point I am still!l healing, not sure what he can or will do at this no point.. I feel like my body is out of his league .

I may have to take up biking.. I do wear a hr polor monitor when I work out my trip zone is 141.. I have to stay below that. I am going to check the settings tmr to see if the apt??? Of afib settings are on.. I know it records a episoid but in believe the knot told me there is a setting in there to help.
Before pm implant I asked about a rule thing that would work both ways for fast and slow. Dr said he has not herd of it..is that not what a icd is?? Both???

Oh well.. At least my slow rate is under control..:-) ...I guess I will have to start the wheel rolling again.

Being a woman with this seems to be a bit harder they just look at you like I did my job.. Now what lol...

That my story.. Will post update..

Dear Knot!!
I am so sorry to hear of your troubles.. You are in my blessings... And I so value your knowledge..

Thanks everyone for just being here!!!

Cynthia

Hi Knot

by cindyredd - 2014-02-17 09:02:13

Hello there,

Sorry to hear your having issues as well. I think I am going to have him call the medtronics people,I don't think he is well versed with setting on people that workout.
I remember my first ablation 15 years ago they did not find the fault line :-) , went home and ended up in the hospital about 12 times, Dr would not admit was side effect of ablation. Second ablation new Dr . he did not want to do after many trips to hospital and minor mini stroke now I talk funny sometimes but he said OK let's go in and look around well went into a fit hr 380 woke up with two burn paddles and a bad headache got cardioverted ,hate to say to the Dr I told you so ..but I could not resist.
However NO one ever told me that all the ablations actually make you're hr lower more.. Nice..

The pm is defiantly working on the Brady for sure. The vaso I have I have to try to control with salt ,hydration,
But the afib is the big issue, I told the Dr I. Thought that a better option would have been a pm icd to,control the afib since I do not do, well on medications.. But nooooo he had to do another ablation.

I will check the settings to see if he has the afib settings on.I know there in there ..I read the book.. I will look at my last print out and tell you the settings..

I may have to just bite the bullet and slow down and work out like a fuddy duddy...
At 57 yrs young I just have a hard time doing anything my age right whatever that is lol..
One day soon I will,be new readers and type better..
Good talking to you

Cynthia

Hang in there

by Theknotguy - 2014-02-17 11:02:21

I know it's frustrating to be in your position. Just finished rehab this morning on busted shoulder (busted again because of CPR), got home and fell asleep. Wife is wondering why - I'm telling her if I wasn't doing the exercises I wouldn't be tired. But still no fun falling asleep because the body can't keep up. Anyway...

About the a-fib. The APP settings don't work for everyone but my EP guy said they didn't hurt either. I get a real funny feeling when the APP kicks in. It feels like I'm going to go into a-fib but don't. I'll take the funny feeling to avoid the a-fib any day.

For cardio rehab, they have me work up to the level of angina then back off. Pushing through angina doesn't help, in fact it hurts in the recovery time. So my brain is telling me to go ahead and I feel like I'm goofing off. Then after a couple of sessions, I get the angina but it's at a higher level. Then you start the process all over again but at a higher level.

One good note. The physical rehab people tell me they like working with heart people. One therapist said heart people are always ready to try something and work harder than other rehab patients.

Hope something I've said will be helpful to you.


Theknotguy

JacC HR

by cindyredd - 2014-02-18 01:02:12

Howdy,

well after reading all your thoughts, I called medtronics.. I got a great gal in MN, She told me my RR was to low. Its set at Med High, which really means LOW, My Afb settings are all turned off, May HR 130/60
Sooooooo I called DR office and requested that a Medtronics Tech be there at my appt.. Og Gosh I can see it now.. lol here she comes the pain in the @@@@@@@@ hahahaha.. By god I am going to work out !!!! without fainting.

You know its all about the $$ here in the US , very few Dr's are in it for both " the actual learning and care" I do have a god DR EP but I think he is getting frustrated.. jeezeee and I am only 8 weeks out .. If I cant get this fairly fixed right at 8 weeks i cant wait to see what a year will be like.

I cant get my HR up past 150 as i tend to go into Tachy /aflutter.. so I have to be a bit careful.. that is a whole other issue.. :-) ,

Keep in touch , I am interested as to your settings and I will post you about mine.

Yippie , a workout and setting person like me ... ogh the fun we will have :) ahahahahahaa

PS may I ask your age? you can private message..

Cynthia

Medtronic rate response

by JerryG - 2014-02-18 08:02:44

Could be that your rate response is set 'on' and is set too sensitive thus causing high HR upon little effort. I also have a Medtronic pacer and work out on my treadmill with a Polar FT7 HR monitor.

Medtronic tech did not switch my rate response 'on' at implant and I initially couldn't understand why my HR didn't go up properly during my workouts. (I have a PM as I have SSS). Back to the cardio and a different Medtronic tech set my rate response 'on' and changed various other settings.

HR goes up now during workout but not as rapidly or as high as it should based on my workout history prior to PM implant. Reading the manual for my A3DR01 PM I find that the sensitivity of the rate response can be set. I am guessing that my RR is set at 'low' and needs to be set a bit higher. Treadmills are 'cushioned' compared with ground or floor and as Medtronic RR uses an accelerometer, it does not read the treadmill workout as being as intense as it is (I hope I understand this part right). I am going to see the cardio and Medtronic tech on March 10 and hopefully get the problem fixed.

I am now five months post implant but unfortunately do not have easy access to medical facilities as I live on my game farm in the bush and have to fly to Johannesburg to see my cardio. Hence the planning of trips for maximum value for the cost of getting there:-)

I hope you get your HR problem sorted soon.

JerryG

JerryG

by cindyredd - 2014-02-18 10:02:57

Hi there,

I have a DR appt today at 3pm eat. My RR is on was at a 8 DR put it to 6 2 weeks ago..
I am very active and am up and down all day.

Can yuu inform me on some settings for workouts. I am 57
But workout hard at least I use to lol..

My EP I don't think has all the setting info.. How do I go about getting a Medtronic tech to go tomDR office and help out??

Cynthia

fast heart rate

by Jackcouo - 2014-02-18 12:02:14

Well Cynthia you have started an interesting discussion here. Your history sounds a little like mine, multiple ablations that lasted from 6 months to 2 years etc: I did go for the mini maze and I am glad that I did. Even though I had to go in for a touch up ablation 6 months ago I still think it was the right choice for the long term. I can give you the name of the doctor that did it for me if your interested. He is very good.

One thing that I have experienced with my pace maker is a change in the complete range of my heart rate. Before the pacer my resting heart rate was in the low 50's and high on around 140 during heavy exercise. Then I got my first pacer for bradycardia and the low was set at 60 and the pacer had a max of 150. Well when I was riding hard my heart rate would go to 150 and stay there, I would get short of breath and lose energy. I thought the pacer was holding me back so with the help of my cardio doc I got the latest and greats Medtronics Advisa MRI. Its max rate is 210 but the rate is set at 175. So now when I'm pushing hard my rate goes to 170 and stays there until I slow way down. My average hr during the ride is in the 140 to 150's where it use to be in the 120 range. Since I was staying up in 170 range to long I thought the accelerator was set to sensitive so had it reprogrammed. Now it is set to slow and my hr wont go above 110 so going back tomorrow to have it set back where it was.
So the point of all this is I am not sure what the heck is going on with my heart and I'm not sure my cardio doc is either. That's why I keep watching this site to try to learn as much as I can.
I hope I'm not rambling along here to much.
Jack

Back from the DR Fast HR PM

by cindyredd - 2014-02-19 10:02:39

HI all,,

Well back from the DR . Met with a Medtronic tech that was about 12 years old. Determined I am now having PSVT,s.
HR 170.
No adjustments to pm tech said they were all fine.the more questions I asked the grumpier he got..

Dr came in and said look I did a ep study we missed it. It won't kill you. I can give you medication beta act.
Then got lectured on hydration,salt.

And was sent on my way.
This is what I has before, pre three ablations and one cardioversion and now a pm...

Here we go again...

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