pacemaker implanted 4 weeks, no change

Pacer settings

by Julros - 2024-09-20 22:00:28

Hi Anne. I am sorry you are not feeling better as of yet, but yes, some setting adjustments should help. It may take several adjustments, depending on your activity level. When I initally asked for adjustments, I was laughed at, because "nobody asks for that", but then again, I think many of that practice's patients were 80 years old. You appear to have the out-of-the-box, factory settings. 

I can tell you that when I go for a walk, my heart rate goes up to 100-110, because the sensitivity has been adjusted. The upper rate is often adusted according to your age and fitness level. I am 67 years old and my upper limit is 155 and I jog and cycle. I should think they would adjust yours higher. 

I was able to have adjustments made while walking and jogging on a treadmill. 

So yes, there is hope that will the right settings, you will have more energy. I think perhaps they leave the factory settings initally, so that one doesn't overdo until the incision is healed. 

Chronotropic Incompetence

by Rch - 2024-09-20 23:44:18

Hi

Sorry to see you have gone through multiple cardiac surgeries, mediastinal infection etc and now implanted with a pacemaker. I think it's best if you wait for 2-3 weeks more until the leads are fully imbedded into the cardiac tissue. At your next intorregation visit, your providers will do lead measurements and check various programming parameters. That might give them some clue to your erratic heart rates or lack of concomitant rise with exercise. Just aside, have you checked your thyroid, calcium etc recently? 

Hope you will get some answers soon!! I wish you well. 

I am sure it will get better

by Gemita - 2024-09-21 03:14:35

Anne,

Firstly welcome.  At 4 weeks post implant you are still clearly healing, a process that can take up to 3 months or more for some of us.  It did for me.  We cannot rush this process, or rush the process of adjusting our pacemaker to suit our individual requirements, requirements that can change over time.  This is the nature of electrical disturbances.

It is always sad when we start questioning our diagnosis and feel that we may have made a mistake getting our pacemaker.  I think though we all experience these thoughts at some stage.  The results of pacing are not usually immediately improved, although they can be for some of us with a diagnosis of heart block for instance.  Sinus node dysfunction and tachycardia/bradycardia syndrome can be more difficult to control and take longer before we see beneficial results from having a pacemaker.  

Clearly our hearts need time to settle and to get used to pacing first and then adjustments and refinements of our settings will need to take place so that our individual symptoms can be addressed.

A pacemaker is usually only recommended if our doctors see a clear need for one or believe that a pacemaker could help to control our symptoms or to improve our quality of life.  I am sure your pacemaker was required and will help you to live a better life Anne. 

From your comments you do have a complex health history which complicates the picture.  We cannot perhaps expect a speedy resolve of all of your symptoms from the pacemaker alone.  It will be a combination of treatments for all your health conditions but this should be a lot easier with a pacemaker in place to prevent your heart rate from falling below the base rate setting.

My base rate is set at 70 bpm and this higher resting rate suits me better than 60 bpm.  As a matter of fact my heart rate is flat too (between 70-80 bpm, day and night).  Rarely changes during walking, even uphill.  Miraculously it doesn’t seem to prevent me from carrying out my normal every day activities since a heart rate of 80 bpm is more than adequate, although more vigorous exercising is not comfortable or sustainable.  I have tried turning a setting on called Rate Response and working with a technician to optimise this, but I have arrhythmias Anne and I find that Rate Response can be a trigger for these disturbances, so my Rate Response is currently off, but of course it may not be the same for you and could well help. 

With your medical history, please do tell your doctors about your blood pressure rise and any other difficult symptoms you may be getting?  You could perhaps monitor your blood pressure three times a day for a week to see if it is definitely changing.  Sometimes a steady, higher heart rate can affect our blood pressure, increasing it slightly, although you do have thyroid issues so it could be this as well.

I am hopeful that things will steadily improve for you.  Please continue to stay positive while you are recovering

Feeling low

by Selwyn - 2024-09-21 11:04:45

Hi there in Ireland, Eridanus.

Firstly, may I say how brave you have been to give us such a factual account of your troubles.

If I may take some of your issues in turn.

Yes, 4 weeks is not long. Your pacemaker needs to bed in.

Low mood goes hand in hand with hyperparathyroidism. I think if I was in your position I would want to have treatment. It is certainly likely to respond to medical management. My sympathy for your side effect of radiation. I have had two courses. It is normal to have some low mood after getting a pacemaker - no one really wants a metal box. On the positive side they are either life saving or will improve your symptoms. If low mood has been for over a month it is certainly worth seeking medical help.

Pacemaker rate response ( ie. the increase of your heart rate with exercise) can be adjusted for ONSET and OFFSET. ie. you can have a quick onset and quickly settle back down, or you can for example have a quick onset and a slow settling down of your pulse. A lot depends on what you want for your lifestyle.  This is a negotiation with those folk that can programme your little box.

As you go from a sick sinus, slow pulse, to a normal pulse, your blood pressure will rise.

( CO = SV X HR.       BP = CO X SVR.     where CO is cardiac output, SV is stroke volume of your hear, HR is heart rate. BP is blood pressure, SVR is systemic vascular resistace )

Once these problems are properly addressed you can be optimistic that your well being will improve.  

thanks

by eridanus - 2024-09-21 12:19:40

thanks very much for the responses, I have learned something from each one and will be better prepared for my checkup and what they can change in the next couple of weeks. Really appreciate it.

Document

by Tex61 - 2024-09-22 17:31:54

Some folks here helped advise me on requesting adjustment.   I documented every issue I was having.    I made them go over every one of them.   Got my upper raised to 160 and the rate response adjusted   

My issues are gone.  No problems exerting myself now.   
 

id say be specific in what you are feeling.  

Keep advocating for yourself

by Joe4Pacematic - 2024-09-27 00:13:55

Glad you are here. Really great advice from everyone.

Just keep monitoring, advocate for yourself with doctors, and be patient and kind to yourself. Meditation and getting to learn my body did a lot for me. It took several years, but I finally know how to listen to my heart, pacer, and body.

Be patient with your healing. That doesnt mean just sit there, but dont judge your progress or lack of progress. Learn to love your device. Cheesy advice, but it helped me a lot!

Just to update

by eridanus - 2024-10-18 21:28:26

I want to update for those who helped me out here, again thanks and for anyone who looks through this forum for their own answers. I went for my post-surgery check and in describing what I had observed with help from this forum, my low rate in pacing was upped from 60 to 70bpm. But I think what really helped was @Selwyn, what you explained, the onset rate, this was pushed up a lot and thank you. Because my symptoms of chest pressure were gone immediately after I walked out of the appointment (I even climbed a stairs to check!). I can't quite believe my chest pressure symptoms have disappeared. Very grateful for the support.