Need advice regarding settings - again

I posted before and your suggestions given were increase base rate and turn on rate response.  

Saw the doctor in June, who noticed I was straight pacing at 60.  He turned on my rate response but did not seem to want to change my base rate.  2 weeks later got a call I had a pacemaker clinic appt, at  that time they changed my base rate to 65.  From that day on my nights have been perfect.  Sleeping through the night, no waking up and no wheezing.  Change of 5 beats, wow, what a difference.  Told them about a strange pressure-like slight suffocating feeling in my throat, and feeling tired.  They told me it takes some people a year to  adjust to a pacemaker.  This has worsened.  Started checking o2 sats when I felt this showing sats of  90-93 with HR 80+ sitting.  Now having swelling in my feet/ankles.  Before the junctional rhythm weighed between 128-130.  I am up to 157.  This is not my normal.   I called the PM clinic 09/17, but have not heard back.  Requesting advice from the most knowledgeable  PM people I know - You - , after which I will  call them again.   

Also, when I login now it shows Who is Online, but no names are listed underneath.  Did something change? 



by AgentX86 - 2020-10-05 17:18:37

Edema is not normal and should be looked at as soon as possible.  This is a symptom of heart failure and must be ruled out. HF can either be a cause of edema or a result.  BTDT.  If you're carrying around an additional 20+ pounds of water, you need to be seen yesterday. 

What is your blood pressure?  It can be through the roof.  Mine was 260/200, so I'm not exagerating.  That was fourteen years ago and I've had no trouble since. It may be a one-time thing but it is deadly if untreated. 

My EP is always looking for edema.  May calves are very large, so he feels them just to make sure but it's all muscle (walking 10+ miles a day does that).

Thanks everyone for the suggestions

by Joyg2b - 2020-10-05 18:07:31

Thank you for the confirmation.  Calling them now.  Some of it is weight gain from not feeling good.  Could go up 2 flights of stairs without difficulty before PM, now have problems with one.  I am small boned and usually my toes don't touch, and you can see my ankle bones.  Best description is some days I have "Fred Flintstone" feet.  I had PV a TV regurgitation, am wondering if a lead passing through the TV has worsened this.  Thank you again.  

Yes you need to be seen

by Gemita - 2020-10-05 18:09:25

Joy, yes you need to be seen as quickly as possible for an interrogation of your pacemaker data and maybe a review of your medication and some blood checks for low oxygen.  Have any of your meds changed?  My husband got edema with Amlodipine, a calcium channel blocker for example and had to switch to a different med.

I wonder if the higher minimum heart rate setting of 65 bpm has somehow made your symptoms worse?  I know BP can rise in some patients if their heart rate is increased.  It doesn't cause this for me personally but it can for some.  You need monitoring for a while to see what is going on and maybe get another echocardiogram done to check your ejection fraction for any signs of heart failure and to check your valves.  I wish you well

Thanks Gemita

by Joyg2b - 2020-10-05 22:44:29

I am so disappointed, because the increase from 60 to 65 made my nights "normal" again.  I am lucky enough to not be on any medication currently, but that now may change.  The only thing different thus far is the pacemaker.   Thank you so much.  Without this club I would be lost.  

Maybe check for sleep apnea too ?

by Gemita - 2020-10-06 02:18:41

Joy, have they done a sleep study to look for breathing distress during night ?  The higher PM setting of 65 bpm would definitely help with this problem as you may have already discovered by chance from your recent heart rate change.  Sleep apnea is a very strong trigger for arrhythmias.

An echocardiogram will be useful too, to check the state of your valves, ejection fraction, size of your chambers.  I note you have minor valve leakages and this concerns you.  I would also ask them if they could rule out pulmonary hypertension?  

There is a lot to think about but monitoring is important now to understand what has happened?  I would perhaps ask for a new set of blood checks to be done for anaemia, electrolytes, thyroid, infection, blood glucose, kidney/liver function and maybe more specific tests like cardiac troponin level, D-dimer and BNP.  Be proactive. You know your body best

See a doctor

by Gotrhythm - 2020-10-06 15:29:30

I too have experienced improvement when my base rate was changed from 65 to 70. It's amazing the huge improvement after a small change, isn't it?

As others have said, your symptoms of edema, weight gain, intermittant pressure in the chest that correlates with lowered O2 stats, are telling you something is wrong. You need to see your cardiologist.

When considering causes, don't let  a change in settings give you tunnel vision. It's possible that your symtoms aren't related to your pacemaker at all.

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