Well, I went for the check up

Hello everyone,
I pray that you are having a good day. I measure my days as "my good heart days & my bad heart days", always praying that I will have more good days of course.
I got my St Jude PM 5 weeks ago. Yesterday was my first pm check-up. I was in and out in minutes. I was told to come back in a year. Is this normal?
They kept my rate set at 75 but changed some setting to make my battery last longer.
I took a list of questions with me and the guy sort of brushed me off. The skin over my PM stays hot all of the time. He felt it and said that it could be the heat that the PM puts out. Does that make sense?
I also told him about my Afib bouts & he said he already knew when they started & stopped & how long they lasted. He did not tell me what I was supposed to do to stop the afib.
The first bout lasted 27 hours and the second time it lasted 21 hours. I feel so bad when I am in afib and I feel bad for days afterwards.
Today my rate is normal and my BP is ok, but I keep having little skips or blips every minute or so. Is there any hope for me getting my life back to normal? I am 63 but sometimes feel 100.
Thanks for listening and for caring. Sorry about all of the complaining.
Take care all
Bobbie

8 Comments

Ohhhhhh Bobby

by Hot Heart - 2011-05-12 03:05:14

Find my post from a while back about how angry I was after my interrogation. When I got home from the hospital I decided to call and complain that I did not get answers to all of my questions. Within minutes someone called me, apologised and answered all my questions. My pm is close to the skin, I'm thin on that bit! lol, and I've never felt any heat from it. I was given some meds for my afib, but I decided not to take them (am a bit of a medsphobic) and it just went away. Of course many people do need meds and if prescribed should take them, but I am one of these people in life who very much believes that our brain has massive power upon our phsical well being. I am sure that you will get your life back, but do not let the hospital fob you off, ask questions and make them give you the answers.

Take care.

HH

PM Questions

by SMITTY - 2011-05-12 05:05:07

Hello Bobbie

You may already have all the answers I can provide, but I'll offer mine anyway.

My normal checkup takes between 15 and 30 minutes. It's 15 min more often than 30.

I never heard of anyone in the U.S.A being told to come back in a year, especially after their first checkup. Mine are 3 MO. and I have seen others at 4 MO. and 6 MO. but none a year in between.

The low setting of 75 is about normal although that setting depends on the patient and what the Dr sees and thinks is best.

The settings change to make the battery last longer was probably just a lowering of the voltage, or power of each impulse. Our PM comes with a factory setting and it is not uncommon for the power output setting to be higher than we need and it is usually lowered during the first or second checkup.

The skin over your PM may be hot but it is not from the PM. A pacemaker does not radiate heat.

From what I can see in your message the only time he was honest is when he didn't try to tell you of anything to stop the A-fib. Your pacemaker will not stop the A-fib. Pacemakers help A-fib by keeping the heart rate from going too low from the medicine some are given to lower the heart rate which is supposed to stop the A-fib. The medicine works for some and not for some. There is also an ablation to stop A-fib and again the PM is used to keep the heart rate at an acceptable rate after a person has an ablation. Another time a PM may come into play for A-fib is when an episode of A-fib is over the heart rate will try to go too low, and in rare cases even stop, and the pacemaker will step in and keep either of these from happening. I would suggest that you think of seeing a Dr specifically for the A-fib. It may improve or stop on its own, but not often.

Skip beats are not uncommon, especially after some procedure that involves the heart. The PM will not stop these. Often times they do go away. Not me for the last year or so but they have gone away in the past.

Good luck to you,

Smitty

Hang In There

by mike thurston - 2011-05-12 05:05:24

I am now totally ablated with no escape rhythmn and stuck in permanent a-fib since May 15th 2007. Before that a-fib ruled my life and nearly killed me. Some folks have a-fib and don't notice it much and others are aware of every beat - that's how I am. Eventually it was real bad and my EP told me to stop my workouts etc. Lots of things took place but finally I ended up PM dependent with an ICD. Good news is I am no longer aware of the chaotic beating of my Atriums as they have been disconnected from the Ventricles which now run the PM. I understand fully hoe debilitating the a-fib is if you are sensitive to it. Maybe an ablation and a PM
set up as CRT (Cardiac Resynchronization Theraphy) would be an option. Huge step and one only you and your Doctors can make but it has been a blessing for me. Hopefully they would leave you with an escape rhythmn as that is mentaly stressing but there is never a guarante with that kind of a p[rocedure. I wish you well and hope whatever course you take works out for you.
Mike T

Talk to your doc... or find a new doc

by COBradyBunch - 2011-05-12 05:05:40

First of all your pacer is not putting out enough heat for your skin to feel hot. You may have a lot of other things going on but the pacer isn't doing that.

If your doc or pacer tech don't answer your questions be forceful and explain to them why you are asking, that this is your body and your life and if they don't seem willing to work with you I seriously recommend you think about a new doc/tech. I have a great doc but I did have to get him to understand that I tend to take charge of my own treatment and we had long discussions about my settings, my treatment, an infection I had early on and all sorts of things. He knows now when he walks in that I will tell him what is going on, ask a ton of questions and that his recommendations have to be explained to my satisfaction and I may or may not take his recommendations (like he wanted my pacer set to go off when I go below 60, problem is my resting heart rate is right around 60 and I don't want to be going off when I don't need to. I wanted it set to 30, he thought that was too low so we eventually compomised at 50).

St. Jude reps?

by jaykay - 2011-05-12 11:05:40

You are not alone. It happened to me two times for two interrogations : the rep was really in a big hurry and didn't like being asked questions (said to ask my doctor instead) and it was the same guy both times. What you call the brush off. I asked for a copy of the checkup and got a one-page technical report telling me nothing. They do phone checks every three months to check battery life and St. Jude reps test every six months here. Was told it depends on your insurance coverage. Yes, there is lots of advice on here about being in charge of your own care but when you're in that chair forget it! Oh well....Just want to commiserate with ya!

Don't Be Too Hard On Him

by SMITTY - 2011-05-13 06:05:01

He Bobbie,

Don't be too hard on your hubby just because he doesn't appreciate the problems you are having with your PM. I'm sure he is like I was before I got a PM. And I was probably like 95% of the other people that have never had a PM. They think getting pacemaker is just another surgical procedure being performed by a Dr that knows what he is doing and the results will be good, as are most surgical procedures. But there is where it ends.

I've had my share of surgical procedures, ranging from hernia repairs, bypass surgery, cysto, stents, to getting two PM implants, but not in that order. I can truthfully say the PM surgery stands head and shoulders above all the rest. Not because the results from it were so much greater, in fact it is the opposite. But because it is a surgery that never stops demanding attention. And unless a person has been there it is hard to realize just how involved that can be.

The really sad part about getting a pacemaker is there are a lot more Dr out there with the surgical skills to implant a pacemaker than there are Dr that understand what they have done. Add to that the few that just want to take the money and run and you have a lot of unhappy patients that never get the full benefit that marvellous piece of electronics can provide.

My guess, from what you say is your Dr may fall into that last group.
You say you have been to a good Dr in MS. I hope you can go to him for I think you only need a Dr that knows pacemakers and cares about the patient.

Speaking of MS, I looked your bio and saw where live. I was born and raised not many miles from Monroe in Yazoo County, MS. I was lured to TX in '53 by the almighty dollar with every intention of getting well healed and going back to MS. But after I found out how badly some of these folks needed my cotton patch knowledge I just kept staying and one day there was nothing but strangers where I left so I just decided to make this home.

I wish you the best,

Smitty

Thank everyone

by punkie71947 - 2011-05-13 11:05:52

Thank you all for your answers and for so much useful information. I did not think that the PM was causing my skip to be hot, put the tech did tell me that HE felt the heat around/on the pm site & that it could be caused by the pm. ???
I had a pacemaker antibiotic envelope placed in the skin pocket and then the PM slipped into that. I am wondering if the mesh envelope could be the problem? You can read about the pm envelope at rehttp://www.texasheartinstitute.org/AboutUs/News/pacemaker_envelope.cfmad .
I had read about this while researching pacemakers, etc. My doctor was thinking about using on me & after we talked he decided to use one. Could that be the culprit?
Smitty, I have had 2 ablations 2009 & 2010 by a doctor in Mississippi ( I am from Louisiana). He is supposed to be the best withinn 100 miles. The ablations did not work. We talked about PM but as my luck has it, my doctor had a heart attack and had to stop practicing for 6 months. I went pack to my local heart doctor & he did the pacemaker on April 6th. I feel horrible and can not get any answers here. My Mississippi doctor is back at work so I am going to see him next week. I pray that he will help me.
I am sorry to drone on, but I am lost and way over my head. Last night I asked,my husband of 45 years ,what he thought that I should do to get help & he told that he will tell the doctor that I trust internet information more that I trust the doctor. He slept in his recliner & I went to bed. I really am so totally lost and confused.
I won't post anymore for a while as I do not want to bother anyone, There are so many on this site that have bigger health problems than mine. I am ashamed of complaing so.
Thank you again for everything, God bless you & keep you all safe.

Greetings Smitty !

by punkie71947 - 2011-05-18 10:05:29

I am sorry for taking so long to get back with you. I have been feeling so bad that I don't do much accept wash the dishes & the clothes and the sit down on my rear end. I am surprised that my dear husband puts up with me....LOL. He is a good man.
Texas lured you away from Mississippi.....we lived in San Antonio for a year or so while my husband was in the Air Force. I was young (19) and homesick so I did not care for Texas or Oklahoma (Tinker AFB).
We moved back here to West Monroe in 1970. 11 years ago we bought a smaller house one block from where I had lived from 1961 til I we got married. My Mama lived still there until 6 years ago. She passed away in 2005.
Have you been keeping up with the Mississippi flood news? We went to Jackson yesterday to see my EP and the water is within a few feet of topping parts of
I-20. The river should crest in the next few days. A lot of building have flooded and the casino boats are closed.
Speaking of seeing my Ep, I am now more confused than ever. I really like this doctor but it is hard for us to travel to see him. He checked my PM and told me it should be checked again in 3 months. My local doctors St Jude tech (saw him last week) told me no check up for a year. Then, my EP doctor in MS told me just before we left that I should decide on who I want to monitor me. I wish that he could do it but with him being 125 mile away it makes sense to use the local doctor even thought I trust my EP more.
My EP also changed my rate to 80 without telling me until it was done. I had been on 75 and felt better. Now what do I do. I am so lost and confused and so is my husband. He stays real quite and shakes his head.
The doctor felt the heat that I have over the PM and he could not tell me what was causing it to feel so hot. I had one of those mesh envelopes inserted and then the PM placed in it. I wonder if the envelope is causing the heat? The EP is running blood test to see if I have an infection.
I think that I will call the EP office tomorrow and see what they say. I sure do not want to make the local doctor made at me....he is supposed to be the best in the best in town. Any suggestions? I really appreciate your input. Thanks Smitty for listening to me whine. Take care. Bobbie

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