Beginners Help and Advice need please!

Diagnosis from Consultants letter

by chris1850 - 2021-03-12 16:02:53

Hi. Sorry, I should have given more information. I am completely new to this so am learning as I go along!

My Diagnosis, taken from my Cardiologists letter to me is:

1. Exercise Intolerance

2. Dizziness/Lightheadedness

3. Chronotropic incompetence

4. ST depression during stage III Bruce protocol with drop in blood pressure

5. Normal echocardiogram

6. Normal MR Scan brain

7. CT coronary angiogram shows minimal  oronary artery calcification but no significant stenosis

Hope the above helps!

Welcome Chris

by Gemita - 2021-03-12 18:49:47

Dear Chris, thank you for completing your Bio and for the information you have provided.  I see you are in the UK (so am I) and I have no doubt that you had a clear indication for your pacemaker from your worsening symptoms alone.  However as ar_vin suggests, we may not yet have the full picture behind your doctors decision to go down the pacemaker route.  You clearly have chronotropic incompetence and a falling heart rate, both of which can be due to sinus node dysfunction and these conditions can worsen over time without timely treatment.  Rate adaptive pacing will help.

I received my Medtronic dual lead pacemaker in 2018 for Sick Sinus Syndrome (tachy/brady) and Syncope. My lower rate is now set at 70 bpm and my modes of pacing are the same as yours:  AAIR mode = atrial pacing and sensing with rate response which automatically switches to DDDR mode =  atrium and ventricle both sensed and paced with rate response, if this is required.  Your resting heart rate in the forties might not be a problem for some but it certainly was for me especially during the day, although my heart rate would drop much lower at night. These symptoms are likely to get worse in the future so perhaps your doctors considered this as well.  

Your follow up appointment in a few weeks will be to assess how well you heart is responding to pacing and whether your symptoms are easing.  They will also check your pacemaker battery and leads to make sure these are functioning well.  They will specifically look for any significant events (like an arrhythmia) as a cause for your continuing symptoms.  They may at that stage not wish to change very much at all since usually they like to observe how we might respond over a few months to the settings we have first.  At this stage it can be trial and error.  If however they see you are still struggling with symptoms they may adjust some of your settings at your first follow up, like Rate Response or your lower rate setting.

In my experience the first follow up can be all too brief and you may not see your cardiologist/electrophysiologist at that time.  This is the start of a long journey and is a work in progress.  We all want everything to change overnight but our hearts need time to recover first from the implant procedure and to adjust to pacing before we go rushing in.  

At your first follow up appointment you may only see your pacemaker technician who may not be willing to answer your many questions or to change any of your settings without authorisation from your consultant, but individual experiences may vary.  I am usually asked to discuss my pacemaker check findings and symptoms with my consultant who could then authorise any specific setting changes.  However during you first appointment I would explain briefly any troublesome symptoms you are getting, so that they can report these to your doctors and look for any obvious causes on your data downloads.  You could ask:

1) Since I am still experiencing lightheadedness and balance problems, is there a setting which can be adjusted to help control these symptoms?  (You could ask for instance whether your Rate Response settings are appropriate for you?)

2) Could you please confirm whether any significant events have been seen on my pacemaker downloads, like an arrhythmia, as a cause for my continuing symptoms?   

My technicians are usually willing to answer a few of my questions before advising me to speak with my doctors so give it a try!

We have many helpful members here who can give advice on settings,  but I would remain patient while your heart settles following your implant procedure.  It took me several months to see improvements from pacing.  It could be that you will need only minimal adjustments once you are well healed.  

Chris, finally, any falls in blood pressure during exercise or at any other time cannot be controlled by your pacemaker (unlike a falling heart rate), so this could well be causing some of your continuing symptoms?  Further testing may be needed and additional treatment offered.  You can discuss this with your consultant.  Good luck 

Thanks

by chris1850 - 2021-03-13 10:32:39

Thank you for your replies, particularly Gemita for your very comprehensive response 

As a complete newcomer to the world of PMs  I have been both both nervous and concerned.  Having had my PM fitted a week ago, I probably naively expected an instant major improvement. I realise now that this is an ongoing process and that I will no doubt have to have a number of tweaks to the settings during the coming months and years. I therefore need to understand my condition better than I currently do and also what is and isn't possible with a PM. At the moment I am largely ignorant in both respects.

Thanks again for your replies. I hope you don't mind a few more silly questions over the coming months!

Chris

There are no silly questions

by Gemita - 2021-03-13 15:42:54

Chris,

It will be a pleasure to hear from you again whenever you have any more questions.  Do not be afraid to ask.  

Yes it is all about understanding our condition, that is half the battle and also knowing what we can and cannot do to improve our situation.  Sometimes we have to accept we are where we are before we can move on but the pacemaker shouldn't hold us back or prevent us from living a normal, active, quality life, quite the opposite.  Without it we would be held back.  With our pacemakers we can do so much more, feel so much better. 

Initially I was very nervous and felt every heart beat, but soon got over my fears and teething problems from pacing.  Now I often remember how dreadful I felt before my pacemaker with a very low heart rate.  I too suffered from breathlessness, dizziness as though I would pass out (and I did on occasions).  Life is more comfortable now and I only wish I had received my pacemaker years ago

welcome

by dwelch - 2021-03-17 23:27:03

The pain is likely to continue for weeks.  it is a process, some things you can return to right away, others (sleeping through the night, sleeping on that side, washing your hair with both hands) will come in their own time.  It really is weeks to get through the recovery but relative to the live of the device it is a small price to pay and you may simply forget about it.  Stay mobile dont wear a sling nor keep that shoulder stiff, gently move it about and use it and find the pain limit and you will see it gets better slowly.

I am in the US so UK may be a bit different but there should be a few week visit and a few month visit then maybe a 6 month visit then annual visits.  the take home boxes and the pandemic are changing the way it has been.  In a few months I will have had pacers for 34 years, I am on device number five.  Perhaps i have been fortunate even though I have had  a handful of cardiologists/EPs that I see the doc each checkup.  First doc did the whole thing himself, ekg pacer check, etc.  Others a nurse or tech did it (never a tech from the pacer company although that is the norm for some folks here) and then the doc would come in and talk about it for a few then see them in a year or six months aparat during the home stretch.

The first couple of visits they will probably want to look at the site to see it is healing nicely, being number one the settings might not be perfect, it takes a while that first year for the leads to grow scar tissue around them where they went in which can change the properties, likewise you have been using it, you might not be exactly the same condition the day they tuned it in the operating room.  It took a good part of the first year to get mine working well, but at the same time that was an old large device, they get better each time, and smaller so long as you keep using the same type of device.

Some techs wont tell you when the tests are about to happen, some race your heart, some feel like someone is sitting on your chest, there are usually only a few tests.  I used to get angry about it but whatever now...

GET A PRINTOUT, ask for your copy of the printout, if they ask a summary report is just fine you dont necessarily need all the ekg plots.  I hear that some people get them on a thumb drive digitally now, everywhere I have been and still am going it is a paper printout.  One nurse/tech in all this time balked and printed it but took it to the doc to give to me, I had to sign some paper to put on file.  In my opinion, this is my device, it is my data I am giving you permission to extract the data and examine it.  Not the other way around.  YMMV.  But with that paper you can if nothing else, come back to this site and reveal whatever you are willing to from that document that will tell us what type of device and settings.  it still wont tell us what your specific condition is and what other experiences you might want to know about from other members.  I have CCHB, complete congenital heart block, meaning a level three (complete) heart block from birth.  the signals that sync the atria and ventricals are not there the top and bottom each run at their own, unsynced rate.  Life expectancy pre-pacemaker was in the teens.  Now it aint no thing, we are unicorns in some sense (there are a number of us here) as we will have MANY pacers across our lifetime, wear out leads, have pacer related issues that others may never see, etc...But the fact is the pacer has kept me alive...

Sorry that you have a reason to join the club, but you have found the best resource anywhere that you can find, collectively we know more than any doc or nurse.  Doesnt mean we can answer every question as some are "it depends".  But I learned more since I have been here than all the years in the dark with only my doc to talk to for a few minutes a year.

Welcome and good luck.  take it easy for the next few weeks...but also keep that arm moving dont get a stiff shoulder that is no fun.