Just a Tidbit

Yesterday I saw my EP/Cardiologist for a follow-up appointment.  All is good for the most part but I did mention how my everday walks include hills and how they completely zap my energy and cause me to be so short of breath.  I asked him how he felt about perhaps making an adjustment to my rate response.  He looked somewhat surprised and asked where I had learned about rate response.  I answered "oh I belong to the Pacemaker Club and that subject is frequently discussed".  His response was "the pacemaker club is a good source of information".

This made me feel pretty great and I just wanted to share it with all you guys who have educated, enlightened and embraced us one and all.

Getting back to my question to him for a minute.  He asked me how I was walking and I told him that I use a walking stick in my right hand and usually hold my hubby's hand with the left.  He said that before he jazzed up the p/m for me to try walking with only the walking stick and swinging my left arm so as to tell the pacemaker to wake up and provide more beats.  Plus, a couple of taps to the p/m is also allowed.  If it ever stops raining I will certainly do this.

Best to you all.

8 Comments

Just a Tidbit

by KHammond - 2024-05-24 17:37:01

Thanks for letting us know the experts think this forum is a reliable source of information.

KH

We can be very proud!

by Gemita - 2024-05-24 19:10:31

Benedeni, thank you for that welcome piece of news.  It is always good to receive feedback.  I have received similar comments from my doctors which rather surprised me at the time.  The Pacemaker Club has certainly built up quite a reputation.

I hope you won’t need to be “jazzed up” and with a few changes in lifestyle and habits, your pacemaker will provide those extra beats when you most need them.  I ended up having my RR turned off again because it didn’t seem to make any difference having it on, apart from triggering more in the way of rhythm disturbances.  

I am having a stress echocardiogram on 29th May, to see how well I cope with exercise on my own.  I have never had a stress echocardiogram before (well not for years).  No doubt it will be hard work.

Please let us know if you manage to activate your RR with those simple measures.  It will certainly be worth working with your team to try to improve your symptoms.  Enjoy your future walks.  Surely it will be drier in the months ahead?  Same weather conditions here and mildew is already attacking my Berberis (not to mention the slugs).  I don't know why I bother.

Please take good care Benedeni and it was lovely to hear from you xx

KHammond and Gemita

by benedeni - 2024-05-24 19:38:07

Thanks for responding.  Gemita, I follow your news carefully and surely hope the stress echo turns out to not be as stressful as we might think.  You will do fine.  We'll all be thinking of you on the 29th.  Just let us know as soon as you feel up to it how things went.

I campaigned a bit for my RR to be turned off but didn't get very far.  We'll see how walking stick and arm swinging works first.  

Pacemaker club

by AgentX86 - 2024-05-24 20:55:04

It's good to know that doctors even know that the Pacemaker Club even exists.  I'm glad that he didn't yell at you for consulting Dr. Google.😁

If you're getting winded, you probably do need RR.  It takes some tuning (I'm surprised that he didn't do some, at least) to get it right.  Swinging arms and tapping isn't the solution.  Not holding hubby's arm isn't either. Just having him there can avoid a fall.  A pacemaker tuning, or three, is cheap, in comparison.

I don't know what your Medicare insurance is like but it costs me $20 to see my device tech.  I've been to see her six times in the last few months.  I'm trying to get my RR tuned better for my lifestyle but it's not going so well.  I must be walking differently at different times but it sets my heart rate all over the place. I'm good doing my walk at 110bpm, but the next lap it'll be 125 (ugh) and the next lap, or 90 (double ugh) in the same place on the course.

RR can be a RPITA.

AgentX86

by benedeni - 2024-05-24 22:14:25

I had my pacemaker implant in 2019.  Since then I've had 3 different cardiologists due to 2 moves.  Each doctor has fine tuned the rate response.  It wasn't turned on until late 2020 but when I started getting really SOB it was turned on and the adjustments began.  I've had several.  

My new Cardiologist/EP (last move I hope!) ordered an Echo and that appeared to be pretty good.  But he also has ordered a stress test so after those results are in he's going to review everything and adjust the RR or not, depending I guess.  

Fortunately my supplemental plan covers everything.  It's costly but I'm happy to have it.  I also recently saw the device tech.  He made a small adjustment but I can't remember what for.  

You walk way further and faster than I!  My round trip is just a little over 1/4 mile but as I mentioned, it's quite hilly.

Thanks for your advice and I hope you get your RR tuned perfectly real soon.

 

PM Club

by piglet22 - 2024-05-25 06:39:41

It might just be my health trust, but if I relied on what I've been told by medics over the years, all I would know is on the PM ID card.

That isn't much. DDDR and two leads is about as far as it goes.

What you get from this forum or club, is real practical experience and advice from a wide range of patients.

The advice I got from the professionals over 19 years ago was to rub my neck (vagus nerve stimulation) and that honey and cider vinegar was good for a bout of bronchitis.

As face to face clinics for routine checks have disappeared, the forum becomes more of a lifeline.

My health trust gets worse.

A patient went in for a hernia and partial bowel removal.

The surgeon was driving home thinking about the case and suddenly remembered he hadn't removed some items from the patients abdomen.

He rushed back to the hospital and while the poor patient was still groggy, took him back to the OT, opened him up again and removed one plastic specimen bag and the section of bowel he had cut out.

I hope he doesn't do PMs or you might end up with someone else's freshly removed device.

R2D2 and Piglet22

by benedeni - 2024-05-25 13:34:49

R2D2 I am glad such a simple thing as swinging your arms when you walk seems to have helped you so much!  I did get to try it  once before the rains returned and to be honest, I didn't feel all that much difference.  But that was only the one time and I shall certainly try again.

Piglet22.  I agree wholeheartedly with you about this Club and it's help to those of us who seek answers to questions that really aren't detailed near enough by our health care providers.  I feel very fortunate indeed.  Your story of the patient and his botched surgery could very well be true in these days and times.  Let's hope our cardiologists are a bit more (a Lot more) conscientious!

Bowel surgery

by AgentX86 - 2024-05-25 14:04:17

That's a scary story!  Here, they'd have a multi-million dollar lawsuit on their hands and the surgeons license in the other. It's hard to believe they left a spare part inside, and a specimen bag?  Here there would be a nurse responsible for counting tools, and whatnot, just to make sure everything is accounted for. Stuff happens but it is scary.

I understand that things in rural communities aren't the greatest in the US but the large cities seem to have pretty good doctor availability.  Except primary care doctors. They're at the bottom of the food chain and are severly over-worked and under-paid, a circular problem. Few actually want to be primary care doctors.

 

 

 

 

 

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