No Energy

Hi everyone.

I'm looking for some advice.

I'm due to have my pacemaker checked this Tuesday. I am convinced that my settings need some fine tuning, but I really don't know what to ask for specifically.

Please keep in mind that where I live (Nova Scotia, Canada) that we only get to see the pacer techs twice a year...so I can't go in one day and then go back a few days later because I don't feel well.

I have no energy since the pacemaker. I have a hard time with any activity, such as walking, sweeping the floor, walking up steps, etc. I feel short of breath.

Yes, I'm on meds (none for the heart) and know that meds can make you tired, but this is more shortness of breath when I do any activity...driving me nuts!!!

I have a dual lead Medtronics pacemaker, the rate response is ON and I know the lower setting is at 60 and I think the higher setting is at 150. I have to admit that I don't understand the words they use like capture, threshold, etc. oh, and I'm set to moderate activity!!

I had pacemaker because of bradycardia, but also saw the words Heart Block written on the paperwork for the actual surgery. I've also been told Sick Sinus Syndrome. Can I possibly have all 3???

So, if anyone out there can help me out, it would greatly be appreciated.

Pookie

10 Comments

pookie

by jessie - 2008-10-10 11:10:34

i am not out of breath and i am 67 and have copd so there is something wrong. you need to push. i know you have some other issues but sounds as if it is under control. ask for your complete bloodcount to begin with. anemia can cause sob. you should not be so something is amiss. i had 3rd degree heart block which resulted in braddychardia thus the p.m. i am otherwise healthy do not smoke anymore and use 2 inhalors for my chronic bronchitus and asthma . fun eh? also lived in a busy polluted industrial area for a good part of my life after 30 till 61. now i live in a small town in farm country. good luck don't despair help is available. take hubby that is an excellent idea. i have one too who won't take no for an answer. your friend jessie

Was Tired as well

by pacergirl - 2008-10-10 11:10:35

Hi Pookie,
I don't know what to tell you... I have been complaining about being tired for forever. Turns out I can't take generic medications. Lucky me, I get to take the expensive stuff. Anyway the switch to real medications has seemed to make me feel more like a normal energetic woman again.
I just wanted to suggest that you insist that something be done. It isn't that you are being any trouble, you just deserve to feel good again. You may want to take a list of your concerns and/or a friend with you to see the dr. That way they can ask the questions and you don't have to feel intimidated. he he... This is my plan for my next appt. I am taking my list and my hubby. He doesn't care who doesn't like him, my goodness I wish I could be as brave as he. He will get some answers for me. We only see the Dr. every 6 months as well.
Best of luck to you,
Pacergirl

Take notes before seen your Dr.

by oscarp727 - 2008-10-10 11:10:39

Hi Pookie,
I have my PM installed two weeks ago. Two days after surgury I felt the same way as before (tired after climbing stairs, dizzi afterwards, etc).
I took note of every detail since I know doctors are usually busy and they tend to underestimate pacients not giving them the full story.
Right after my complete explanation he knew what values to change, and everything felt much better since that tune up.
Dont be shy to go thru every little piece of detail. The clue might be in some event that might seem to you irrelevant.

Good luck.
Oscarp727.

I'm in the same boat

by Gonnie - 2008-10-10 11:10:46

I go in on October 29th for my first pacer check. I'm always so impressed on this board that all these people know their settings etc. and I know nothing! I intend to ask alot of questions but, like you, I don't know how to ask for what I think I need. I understand what my condition was pre-pacer/defib but moving forward, I just feel like such a moron. There is a bit of an imtimidation factor too - I don't want to sound stupid but I really don't know. I think our approach should be honest with all of our questions - and describe what's happening to you just like you did here. I've read on here plenty of times that it's our heart and we need to know what is going on with it. I'll look forward to hearing how your checkup went. Please post your experience so I'll maybe learn from you!

Twice a year?

by ElectricFrank - 2008-10-11 01:10:51

Are you sure? What would they do if your pacer lost capture like mine did and was skipping 4 beats in a row and headed toward worse. If I had to wait several months to see someone, they would have had to reprogram my ashes!

Is there anyone out there from Canada reading this who could straighten us out, eh?

frank

great pookie!

by jessie - 2008-10-11 03:10:19

we will be waiting to see how you made out jess

Thanks Everyone

by Pookie - 2008-10-11 03:10:34

Thanks to everyone and their support.

I always take Mr. Pookie with me and he does ask a lot of questions too. But sometimes they speak so much in "their" language that I get more confused than ever.

This time I am telling them straight out that something has to be done as feeling this drained for 4 years is enough....I am entitled to get this thing working right for me! And if it takes a few visits, then so be it!!!!!!!!!

And I'm going to start with the basics of the pacemaker and ask question after question. They can't kick me out....can they?? LOL.

Anyways, I guess I'll have to put on my "I mean business" hat and go from there. Some people I chat with from this website have their settings changed and can go for a stress test all within the same appointment! OR they can have their settings changed and go back within a few days if they are not comfortable...wow.

To think that pushing a few buttons could make all the difference in my life makes me shudder...we are almost helpless and/or dependent as we have to respect and trust what the doctors and techs say and do...what other choice do we have? I cannot fire the pacemaker tech as we only have 4 techs in only one pacemaker clinic for all 4 provinces!!

Wish me luck and I'll update ya'll on Tuesday afternoon.

thanks
Pookie

eh frank

by jessie - 2008-10-11 12:10:53

frank i go once a year to london ontario for check. if i needed to go more i could just call them and they would see me if i felt not right. so pookie goes more often., i am on b.p. and cholesterol meds. she is on none. she needs to address this tiredness and get a full workup to find out why. jessie

pookie

by jessie - 2008-10-11 12:10:55

write it all down as you did once before. take mr.pookie with you and make it understood you need some answers a complete workup maybe. my friend who lives on the cabot trail teresa strickland. well we trained to-gether 45 years a go and she was here in june with my other nursing friend for a barbecue well guess what her husband david developed a brain aneurism and din't make it. we are a lot older than you but still the young retired so make sure you ask. you are far too young to feel so ill. jessie again

Pookie

by Nuka - 2008-10-12 03:10:04

You can only go to the pacemaker clinic twice a year? Did someone tell you that you can't call and make additional appointments if you feel something is not
right with your PM?

I live in Winnipeg, Manitoba, Canada and I also have 6 month appointments but I have on a few occasions called to tell them I am having problems and need to have my PM checked again and am accommodated within 24-36 hours.

I'm sure many people don't understand the medical terms of their heart condition nor the technical terms of their pacemaker but there is some help at hand. You can go to your search engine and type in.. Medical Lay Terms and get some understanding of carciac terminology there. As for the PM there is a lot of terminology information on this site. Look it up under the search space.

This is what I have done, I hope it might help you. I had my cardiologist write out my diagnosis as he would for an insurance company and send it to me. I keep a copy of it in my purse just in case find myself in emergency and need to save time. Rememeber in Canada by law your medical file is yours and you cannot be refused the information in it. Now often you will have to pay to have it copied but if it's important to you it's worth it.

As for the pacemaker clinic they cannot refuse to see you and take care of you. I think you will have to be a little more assertive and put your no-nonsence voice in gear.

I hope you get your problems straightened out very soon.

Happy Thanksgiving.

Nukka (Joan)

You know you're wired when...

Born to be Wired is your theme song.

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