1st Check up - 'All ok' - Not in my opinion

Hi All,

Firstly Ian, Frank, Smitty, Mike, Kar4n and Cabg thanks for your helpful comments and advice on my previous posts,they pushed me to continue trying to get some answers so................

I eventually managed to get an appointment to get my pacemaker checked, this happened tuesday and it appears my appointment has gone the way of many others that have posted on here but im looking for a bit of hope as i can feel myself getting more down to the verge of depression by the day.

My pacemaker is working fine - 'everything is working well' apparently and only minor adjustments have been made to 'optimize' settings and preserve battery life, they didnt expand on the adjustments and i didnt ask (although i will next time !!). I did ask whether the changes would make my symptoms better such as the SOB, palpatation like pounding and blood pressure rising signnificantly on very mild exertion. The answer was 'no' and there was nothing wrong, come back in 6 months for my next check up. I told them i couldn't go on like this and couldnt understand why my symptoms have got so much worse since the operation - they didnt know but suggested i speak to me cardiologist when i see him in 3 weeks.

I luckily bumped into my cardiologist on the way out of the hospital and he appears confused by my current symptoms but did say i may just be taking time to adjust and this could take 4-6 months ..............help i cant feel this way for that long, i find it difficult to do anything now except sit on the couch, cant even sleep properly. He has however booked me in for an echo this friday so we can compare with the old one at my appointment.

Anyway sorry for the rant but again any words of wisdom, advice would be greatly received.

Thanks

Ruth

10 Comments

TITLE

by TITLE - 2012-01-11 09:01:20

What's in an acronym? The answer is at the end. Ruth, when I read your post it is the very reason I come to this site. Everything you have described fits me exactly, even the echo that was ordered for yes, this Friday. My pacer was "installed" March 2011. As I approach my 1 year anniversary I've asked myself am I better off? The answer is yes. Without the device I figure I would be close to death. I am not 100% paced as many are however the pacer gives me hope, some good days and allows me to keep working to earn a living that I do cherish. I too get down...depressed. I too ask the $60,000 question of why? I too am so tired of being tired. And I too wonder if I'll ever feel better without out all of the ups and downs. Recently my hemoglobin has been down, glucose up and I am almost back to feeling the way I did before the implant. So why am I better off? The answer is I'm alive. I'm still enjoying my beautiful wife and marriage, my grandchildren and children; all at a slower pace. Take heart you are not alone. Please don't give up. I need you and so do the others. We all rest our cyber heads on each other shoulders and cry and know that we are not alone. Take care. And the acronym TITLE? Trust In The Lord Everyday.
TITLE

Ruth: Don't...

by donr - 2012-01-11 10:01:07

...give up!

You are authorized to be disgusted with your situation. But NOT to become depressed. This mess is not YOUR fault.

Right now you are being forgotten by the various parts of the healthcare system. It looks at you in bits & pieces, never as a complete system. Yep - the old PM sure is working fine. Doing just what it is DESIGNED to do & PROGRAMMED TO do. It's just that no one has looked at the coination of the Pm and YOU. That's where it is falling apart. Someone has to be the gatekeeper & make sure that all the pieces are coordinated - that has to be YOU! No one else will or can do it for you.

You just realized where to start. ASK Questions. Most of them MUST start out "WHY........" If the PM techs don't have to explain themselves they will do what they want w/o asking you. They don't know many answers about how you are reacting. You know the descriptive teerms - it's happening to you - & your cardio should be able to answer why. Good for you at stopping the cardio in the hall. BTW: His answer was a non-answer so he could break off the conversation. My guess is that 99% of the changes they make wil be sensed w/i minutes, not months. I've had that happen, Pookie has. Many folks here claim dramatic, near instantaneous effects when PM settings are changed.

Keep at it & you will pesevere.

Don

I agree with the above posts but I

by janetinak - 2012-01-11 10:01:08

will add my opinion. I would get an appointement to see your Cardiologist right away. Is this person the same one as put in your PM? I assume so but if an EP is different I'd get in to see him/her right away. I had SOB after 4 yrs with my 2nd PM & mentioned it & I was worked up & as Don says the tech changed the settings (actually increased my rate response thingie) & it was immediately better. As you can probably guess I am not one who asks for the read-out, etc. I don't care just fix it so I feel better is my attitude. And luckily I have a EP team (EP, RN'& Tech's) that jumps on it. That PM lasted another 4 yrs & now am on 3rd & when went for my 1st check & complained that despite getting same settings as before needed another change & it was done. So keep going in & get it fixed. Good luck with this.

Janet

Bull Whacky

by ElectricFrank - 2012-01-12 02:01:28

Where do I start?

#1. Pacemakers DO NOT require long time periods for the system to adjust to them. That would be like saying the light bulb in your desk lamp needs a few months to adjust to the switch. Most if not all pacemaker adjustments take effect immediately. The longer time periods happen because the doc is incompetent or too lazy to spend the time to find the right settings.

#2. If you don't get the printouts from checkups, don't insist on getting results, dutifully wait til the next scheduled appointment no matter how you feel, and just generally let the doc do what is convenient then resign yourself to feeling lousy.

#3. 3rd Degree AV block is one of the simplest defects to handle with a pacer. It has an ominous name, but is actually just a damaged nerve bundle that is easily bypassed by the pacemaker. The adjustments are simple if the doc knows what he/she is doing. As many of you know that's what I have, and at 81 yrs am still hiking and Jeeping around often at altitudes over 10,000" without a problem.

We need to accept that in today's corporate medicine environment we are dealing with a system that rewards getting the patient in and out of the office in 10 minutes and convinced they must wait til the next appt. We also have many docs who are totally in over their head with electronic devices like pacers. It's not they are bad people..they just aren't trained to handle electronic problems.

So there's my comments.

cheers,

frank

Electric Frank

by pacerjack - 2012-01-12 04:01:41

Thanks for your 3rd degree comments. Your age and success with your pacer are indeed encouraging. Thanks for taking the time to set the record straight. Isn't that what this board is about?

Jack

general

by orion5180 - 2012-01-12 10:01:00

most of you have a duel lead pacemaker well mine is a three lead invented by the dr that put it in me its called a bi polar pacemaker lead wire in ventriculae lead wire in atrium and a lead in the lt ventricle that is then syronized all together this increase your e f and thats what you want my dr is world renowned inventor, and knows what he doing just google him dr liberman michigan
tom anybody need to speak call me 248 505 1881

First comment

by pacerjack - 2012-01-12 12:01:30

My pacemaker (PM2210) was installed in June 2011. My problem was a A-V block of the 3rd degree (not good). I'm 74 years old and have suffered hypertension for maybe 10 years. So I feel lucky to be seeing the grass from the green side (ha) and feel good most days. Like a lot of you, I feel somewhat tired especially in the evening. My son who is an emergency physician says that it may take several years for my system to adjust to this computer in my chest. So I guess we need to be patient and confident that our bodies will become one with our pacemakers over time. I do have a Merlin transmitter that I use to check in with the doctor every 3 months or so.

Good luck to all, and I will respond to anyone interested.
Jack

I just slipped on your soap

by ElectricFrank - 2012-01-13 02:01:18

So here I am again. I agree Don. The docs either don't tell their patients anything, or if they do they make up some crazy story they think will keep them happy.

Any of you old enough to remember Pat Paulson from the Smothers Brothers Comedy Hour back in the 60's (1960's that is)? He used to do any act where he ran for president and would refer to the other candidates statements as Bull Whacky.

frank

I remember Pat Paulson!

by donr - 2012-01-13 09:01:40

Do you remember Morey Amsterdam?

I see so many women here that IMHO are being treated as "Just another hysterical woman." That rots my socks! (Rots my socks = Burns my Girdle = gets my knickers in a twist.) They get blown off because the doc doesn't want to spend time trying to find out what their problem is.

I liked ypur solution "The doc may be finished w/ meut I'm not finished w/ him!" Good one.

Don

Frank & Patch

by donr - 2012-01-13 12:01:07

Bull Whacky (N) (1) That stuff that sacred bulls leave all over India. The locals in rural areas burn it to cook their food. (2) A descriptive term for a crazy bull. Most famously used by Custer at Little Big Horn when he said "That Bull whacky..." or words to that effect.

What I find disgusting is not misinformation, but a total lack of it. The professionals don't appear to have the time to tell their patients ANYTHING, leaving them adrift in a sea of befuddled ignorance not of their making. Further, they do not take the time to determine exactly what their patient's problems are and try to solve them. They are defaulting to us rank, self-taught amateurs to pool our cloud of many small bits & pieces of knowledge to help folks out.

That, to me, is a dereliction of duty.

Who wants the soapbox now?

Don

You know you're wired when...

The dog’s invisible fence prevents you from leaving the backyard.

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My pacemaker has ultimately saved mine and my unborn child’s life for which I am thankful.