1st check up

Hello: Had my first check up yesterday after having PM put in two weeks ago. We are farmers and I swear our vet is more compasionate and understanding than this dr. was. He walks in and starts telling the technician how to adjust the settings without explaining anything to me, or asking how I was feeling or anything about what he was doing. I felt like saying "oh by the way, that's my heart you are playing with".....any how now that I have vented wanted to say thank you so much to to all of you and your wonderful comments and support. I am so new and unprepared or this. I am 47 been healthy as a horse all my life, having ongoing symptoms for the past few years which my regular GP always dismissed until this winter ended up in emergency. Long and short I have been diagnosed with BR. and SSS I am now pacing at 85%. Is this normal? I read that at this amount of pacing it will affect the heart and will this not make the batteries be used up quicker. I did get my readouts as one participant told me to do, but I don't know how to read them.

thanks

5 Comments

Hi chum:)

by Pookie - 2012-08-03 01:08:18

I am so glad you found us.

Unfortunately there are some doctors who have as much personality as a wet Kleenex. But not all of them are that way thank goodness.

When I have run into the type of doctor you have described I now speak up. At first I didn't. I must have been shy or a bit intimidated. Please get over whatever is keeping you back from speaking up and use your voice:) Once they know you want and need to be actively involved in your health care then I think you will see quite a change in the doctor's communication with you. Unfortunately, it becomes so routine for them that I think some forget they are dealing with a human being!!!

So next time speak up. Perhaps you can start by bringing a list of questions with you and tell them you want/need to know and want to understand what the heck is going on. I think they will appreciate this.

It can feel very awkward the 1st time you speak up, but after that initial time, I truly believe your doctor will start communicating with you. You're the patient and you deserve to be treated with respect and there are times that we have to politely remind them of this.

I had my pacer implanted in November of 2004 at the age of 42 for Sick Sinus Syndrome. I have a Medtronic Enpluse - dual lead. I had a # of issues but eventually they all got sorted out. I went from pacing 27% of the time and feeling AWFUL (short of breath, exhausted, etc) to using my pacer 89% of the time, but now I have my life back and I can do almost anything I want to now.

At first when they changed the settings and my % went up to 89 I was very uncomfortable about that. I couldn't wrap my head around what I thought was such a high number. But the % is irrelevant if you feel better - that's the way I now look at it. 85% - yes, that can be "normal". Perhaps other members will respond to your post and will share with you their %. Oh - I pace (and always have) less than 1% in the ventricle.

Yes, at 85% it may use up your battery quicker, but again, I think you should try and focus on how you feel not the numbers. It's all new to you, but with time, I'm sure you will feel more at ease.

If there is anything on your printout that you do not understand, just post it as a question and I am quite positive that Electric Frank or a few other really smart people will help you decipher it all.

When I go to have my pacer interrogated, I make it a point to ask about one thing on the print out per visit.

Remember - knowledge is power:)

You didn't say how you are feeling, are you back to your old routine? are you sleeping okay? are you back to work?

I'm not too sure about how that much pacing will affect the heart - but it sure is a good question to bring up the next time you see your cardiologist or go to have your PM interrogated. I've read if one is primarily paced in the ventricle, then that can (emphasis on can) lead to other things down the road. There is so much to learn and understand and each of us are so different even though we may have the same diagnosis and maybe even the same device, but again, it is something that your doctor should be sitting down with you and explaining.

Again, don't allow your doctor to treat you the way you described....speak up and start a dialogue and see what happens.

Enjoy your weekend,
Pookie

Hi

by Jax - 2012-08-03 06:08:15

I pace 85% in the upper chamber And 12% in the lower chamber. Feel real good. That's what counts.

EPs a a funny breed . . . .

by SaraTB - 2012-08-03 06:08:37

When I was first referred to an EP by a regular cardiologist, she warned me that "he doesn't have much of a bedside manner, but he's really good". Her feeling was that the doctors who are attracted to such a technical, computer driven field tend to be more of the 'nerdy' type. In other words, fascinated by the technology, highly skilled, but not terribly good at communication with an actual patient.

I started thinking of them as like the IT guys where I worked: brilliant at what they do, but hopeless at explaining it to ordinary folk, until you press them, and keep stopping them when they use words you don't understand.

So far, that's working for me! Welcome to the PM club Chum!

Chum

by manaman - 2012-08-04 10:08:30

Being an old retired farmer myself let me see if we cn relate here. In your time it's tractors, in my time there were still horses and mules! My grandpa started me off with: To make these animals work FOR you you have to get their ATTENTION! The best way to get there attention is a POLE or 2x4 ( usually up side the head) but, guess what, it worked every time!!.
Now, you cannot hit your doctor up side the head but you CAN get his/her ATTENTION. They say the way to a mans heart is through his stomach and the way to a professional (doctor) is through his bank account!!
Sit down and POLITELY ask your questions (write them down so you won't forget them (remember when you are in a doctors office it is "YOUR TIME and YOUR DIME" .Don't leave until you know what you need/want to know ( the doctor is never on time for an appointment anyway) Just remember that this is YOUR HEALTH you are talking/concerned about, not his/hers.
When I had my first PM installed nearly 20 years ago I asked the doctor to have a little prayer BEFORE surgery and he told me he didn't pray ( I told him he did if he was going to work on me and an attending nurse immediately took over and handled the situation ( have been told by his staff that he now prays with each patient if asked and on his office wall is a sign that reads" ( My ID says DR not GOD, I deliver what HE gives).
As far as how fst a battery is used up doesn't matter! Really a very quick replacement process (how often do you change batteries in that big JOHN DEERE?) Change the battery in your "DEAR SELF" as often as needed. (it won't kill you if it dies it will only revert back to your original condition, anyway it will give you an end of battery life warning).
I agree with POOKIE, ask for a print out of your interigtion at each visit and ask for an explanation of at least one line each time (usually the tech. will fll over his/her selves to answer ANY question your may ask. Ask the tech if they work for the PM manufacturer or the clinic/hospital that put it in. Remember "THERE IS NO SUCH THING AS A DUM QUESTION, ONLY A DUM ANSWER."
In closing, plow the corn, milk the cow,slopthe hogs, pluck the chicken and ENJOY the NEW life you have been given, we PM receips are a chosen few that get NEW leases on life, enjoy it to it's fullest. Your body will certainly let you know your limitations.
Good luck and PLEASE keep the food supply flowing! Thanks for being wht you are!
Regards,
Cecil

pacing at 100%

by Sabine - 2012-08-04 12:08:25

Welcome, chum!

I just wanted to let you know that I am pacing at 100%, have had my PM for over 6 years and have very little impedance (using up the battery) as yet. I was told that every PM is different, even within the same brand. Some batteries last longer than others. Apparently the newer ones are lasting longer and longer.

I only have a ventricular lead, though, so maybe it doesn't use as much of the battery as two leads would. I just saw a specialist today and will soon get a new PM with an atrial lead added. I wonder whether my new PM won't last as long but my quality of life is so poor right now that I won't mind, as long as I feel better.

Sara TB has good insight into dealing with doctors with poor bedside manners!

Those reports made no sense at all to me at first. Now I know what to look for. Compare them over time and see if there are any changes.

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