not what I expected

Good evening everyone,

I am new to this group and am hoping you will give me guidance and good advise.

I had a pacemaker inserted on the 13th.  I have sick sinus syndrome.  Which took the doctors at least three years to figure this out!.  I had been very fatiqued, short of breath, and had to sit down after any activity to catch my breath.

I have a apple watch so can monitor my heart rate.  The issue is I have had NO changes at all in my symptoms.  And at times, my Heart rate drops to 40, or spikes to 100 with any small activity such as taking out the garbage.  I do not ever feel my pacer kicking in. I have messaged my MD several times and have sent transmissions to his office. 

I did have a followup appt next thursday.  However after several my chart emails and phone calls my appt was changed to next friday so I could see a nurse practioner.  NOT my electrophysiologist. 

I am very disappointed and disillusioned as I was assured this pacemaker would solve the physical issuses I experienced.  Well, the phyisical issues are the same and frankly worse.

I am writing to you all to see if others have had the same issues and if so, did they improve???

I am so looking forward to your replies

Susan

4 Comments

welcome to the club you did not want to belong to

by new to pace.... - 2024-05-17 22:08:26

it would help if you put in your bio your make and model.  Thank you for putting in you information. You really need to give yourself time to heal.   as it has been just a couple of days.  

new to pace

13th

by AgentX86 - 2024-05-18 01:30:47

As the others have said, it's still way too early to give up.  Many find relief before they get their feet on the floor after.  Others aren't so lucky. 

SSS is a fairly broad category but from your description, it seems that you have Rate Response turned on. A low heart rate indicates an arrhythmia that's fooling your measuring device.  Your rate isn't dropping.

A runaway heart rate with a small exertion indicates that your pacemaker is set to be too sensitive, and perhaps your average daily living rate is set too high. These are adjustments that will be corrected as you go along. Often, when they implant the PM, they just use the settings out of the box, which may be completely inappropriate for you.

It's not surprising at all that you're seeing an NP.  Actually, I would  have expected an RN.  At ten days, all they're going to do is a "wound check".  They just want to make sure it's healing properly and there is no infection.  They'll remove anything left of the bandage and steri-strips (or sutures). It doesn't take an EP for this. You'll likely get some more instructions and another appointment for about four weeks after.

Since you will have an NP, you should be able to get some answers.  The NP probably works directly under the EP's license, so should know what's going on.

You're obviously not living in a perfect world but give it some time.  Be sure they know how you "physically" feel and get a plan to make it better. Work with your medical team, not against.

New to pacing

by Selwyn - 2024-05-18 05:44:42

My sympathy over the delay in diagnosis. The human body is certainly complex, especially when it is not working to order.

Having your pacemaker adjusted slowly to your personal activities is the way forward. This cannot occur until there is healing. It is usual to implant a pacemaker and then wait about 6 weeks for the leads and box to bed in before starting to fine tune to your needs.  In particular leads need to bed in - the electrics involved change with this process. Changes are best made slowly so that extremes are avoided, and that means extreme symptoms!

Patience is a virtue. Pacemakers will record what is going on with regard to your heart rhythm.  When you have your check up the physiologist will be able to look at the activity of the heart over the last few weeks and start to make  adjustments according to your needs.  You can then see how it goes. If you are not entirely sorted, it is reasonable after a few more weeks to tell them and then go back for some fine adjustments. All of this takes time as fine tuning a pacemaker is personal to your needs.

New to Pacing

by Evelyn - 2024-05-19 18:59:16

Thank you all so much for your kind responses. They give me hope that this will all work out.

I will be patient....and give myself time to heal and adjust. 

I will fill in the additional info for my pacer.

Looking forward to my Friday appt and hopefully will have a better understanding fo what to expect.

Once again, thank you all for your words of encouragement. 

Susan

You know you're wired when...

You have a 25 year mortgage on your device.

Member Quotes

The experience of having a couple of lengths of wire fed into your heart muscle and an electronic 'box' tucked under the skin is not an insignificant event, but you will survive.