looking for someone to relate to

Lower rate at 50.

by marylandpm - 2017-01-26 20:13:35

  You could ask that you lower rate be set at 60.  60 is the normal lower rate for most people. Also if you can get a copy of the device report there is a lot you can learn about your condition.  

Jack

Lower rate adjustment

by ljoyce - 2017-01-26 22:05:25

Thank you Jack. I will try this and see how it goes. I will also ask for the print out and have them explain it to me. 

Some thoughts

by Gotrhythm - 2017-01-27 14:03:56

You don't say what the diagnosis was that led to the pacemaker. Knowing what the diagnosis signifies and relating that to your experience can clarify a lot.

I've just discovered Youtube animations of heart issues in the last year or so, and I'll admit I on a bit of a hobby horse about them, but if you are seeking a better understanding of your condition, it's a great place to start. The better you understand what's going on with your heart, the better questions you can ask, and the easier it is for your docs to communicate with you.

Settings can indeed be changed. At my insistance the lower setting was raised from 60 to 70, and for me the differnce was night and day. If you don't get good explanations from the techs, ask for a printout. Someone here can help you interpret them.

As for things that exaccerbate your symtoms, for me fatigue is a biggie, but also getting harried and stressed out, too much caffieine, low blood sugar, and running a fever. I used to mentally flog myself to keep going in spite of how I felt. I've learned to be far more respectful of my body's requirements.

Pacemakers made easy

by marylandpm - 2017-01-27 16:12:20

 The book "Pacemakers made easy" by Carl Roberson helped me to get started understanding my PM device check report.  Its available to download. 

Lower rate adjustment

by ljoyce - 2017-01-27 17:15:40

The diagnosis was 3 degree heart block with no underlying issues. They said I was a bit of an anomoly. There was no significant lead up to this diagnosis. I kept saying I felt unwell and they (GP)couldn't find anything wrong. I finally couldnt take it anymore and went to the hospital. 3 days later I had a pacemaker. Kind of a whirlwind romance. I will watch youtube that is a great suggestion thank you. I will also download the book suggested above. Thank you for all of the insight. I will ask for the print out next time i visit the clinic and then be back on this site for clarification lol. 

Thanks again. 

Mine's a similar story!

by laughingarcher - 2017-02-06 04:19:25

Hi Ljoyce!  Although I'm fairly fit with no health issues, I started feeling strangely unwell at about age 46, becoming faint and short of breath with just walking, barely making it around my regular 3 mile route. I told my GP for six years something was wrong with my heart but she just kept telling me I was "getting older", that I was "menopausal", that I "should go run some stairs."  Hah!  Then three years ago, while on vacation in Greece, I suddenly couldn't walk up stairs (let alone run up them) or carry my suitcase, had to stop every few feet to catch my breath.  Luckily my husband's dad has a friend in Crete who is a doctor.  When she checked me out, my pulse was 38 (I'll never forget the shock on her face!) and she said I needed a pacemaker.  She was my guardian angel and made the calls and pulled the strings that got me into Crete's University Hospital, where for the next week the wonderful doctors ran me through every test imaginable before deciding I have 3rd Degree Block and fitting me with a pacemaker.

Like you, I want to know what's going on with my body, so I'm one of "those" patients who ask a lot of questions!  I always get a hard copy of my interrogation report and I read a lot (this website is great for learning!)  I've actually educated my PM team about things like Rate Response (don't need it since I'm not atrial-paced) so they turned that off; my lower limit was too high at 60 so I had it turned down to 55 (which doesn't sound like a lot but it made a big difference in my sleep); a couple of self-tests the PM does were causing my heart to race uncomfortably (always at 8:54 pm!) so they turned those off.

So it sounds like we might have similar stories!  I'd be happy to compare notes and be your PM buddy.  :-)

Cheers!

I can relate!

by RvC - 2017-03-25 20:28:29

Hi Lisanne,  You and I should talk.  I'm a 50 year old female with a dual lead pacemaker for complete heartblock like yourself.  I also love to exercise, and I also experience issues anywhere from 25 - 45 minutes into certain activities (walking and running).  I can do all kinds of other stuff without any issues whatsoever, but try walking for 45 minutes, and it does not go well.  Kind of limits you in life.  I've done all kinds of things to try and figure this out over the past 2.5 years because they keep telling me my pacemaker is working beautifully, but we've come full circle (because there is nothing else wrong with me) and we're back to looking at the pacemaker.  Maybe we can save each other some time and effort if we compare notes?  By the way, the smartest thing I've done so far is sign up to this group, second is to download the book Pacemakers Made Easy.