Newbie

Acceptance

by Gemita - 2019-11-14 04:25:40

Hello Pacer2019,

Acceptance sometimes is the key to recovery and moving on.  Why me, what has caused my condition is something that we all ask ourselves but there comes a time when all the tests in the world can't come up with an answer to satisfy us and it is exhausting to keep looking for them.  Your energy could be more usefully spent in getting better through daily rehabilitation and conserving what energy you do have for what is important in your life.

My advice go easy for a few months building up strength slowly. Learn to pace your self. Try not to do too much today and nothing tomorrow.  Ask lots of questions about your pacemaker and work with your doctors to find the optimum pacemaker settings for you.  This will take time since it is a learning process for both doctor and patient alike to get the balance right. You may find you need less medication or changes to your medication. I certainly have and this has been beneficial.

I wish you well on your pacemaker journey 

on the brighter side

by dwelch - 2019-11-14 07:48:25

on the brighter side of the other posts.  you should be able to get back to what you were doing.  It just takes a while.  less than two months may or may not be pushing it.  The twinge may be normal, you just had surgery, takes time to heal, you move around you pull on the skin that was just worked on, can get little spikes of pain, they go away as they heal.  Being an active person could/should reduce the recovery time but it is not instant.  Pace yourself, pun not intended.  We have all been there, you will get there.  Keep on trying you will get there.

It takes time

by AgentX86 - 2019-11-14 08:53:28

You just had surgery. Give yourself time to heal. You didn't start playing racquetball a month after your CABG, did you?

As far as the root cause of your SSS, well, you've already hah a CABG. You really don't need to look further, not that it would help. Heart disease manifests itself in many ways, electrical problems can be caused by the same processes as plumbing problems. I started with Afib, then a 3xCABG, then pacemaker,  and the latest addition to the fun, a seizure (my neurologist believes was a result of the heart throwing blood clots). Does knowing the cause help me? Nope. Does it help the doctors treating me? Maybe, but I doubt it. They can't fix the root cause (choosing parents badly). They can only treat what's wrong. I'm good with that.

Make peace with yourself. Added stress doesn't help a bit.

these comments are helpful

by Pacer2019 - 2019-11-14 16:20:28

From the comments here is what I have learned or thimk I have :

competing 4-6 weeks after insertion does not seem realistic...  maybe more like Jan 1 for competition? continue walking and a little jogging in spurts.

I dont understand the adjustment part that will be necessary ...My dr said he set my device at 60-150?

How will I know I need to contact for possible adjustment? 

I do wear a Garmin watch that tracks heart beat ...I notice lately my resting rate is higher than it normally is .... seems to be in 70's

Why do you need a pacemaker?

by AgentX86 - 2019-11-14 23:02:04

Without any information about you it's difficult to even guess what you need.  There is a lot more to a pacemaker than minimum and maximum rate settings.  Why do you have a pacer?  What's wrong with your heart?  Chronotopic incompetence?  Block? 

Anyway, pacemakers have hundreds, of settings and options.  Depending on your needs these all need to be adjusted to optimize your performance.  The more performance you demand from your heart, the more the settings may need to be tweaked.  You should have a pacemaker technician assigned to you for periodic pacemaker interrogations.  This is the person you work with to optimize your settings.  The PM tech works with an EP to make sure what you're doing is safe for you.

News to me

by Pacer2019 - 2019-11-14 23:08:44

This is all news to me .... they inserted it , sent me home , then I followed up with a nurse in a week or so concerning mostly the incision .

she hooked me up to a machine and said my heart is 100% reliant non the pacer.

next follow up is in February.

i went in because my resting rate was 40.... I was feeling light headed all the time. 

at this point I really don't know where to start.  

printout

by dwelch - 2019-11-14 23:48:53

When you are in the office and they are finishing up the tests and printing out the results for the doc, ask for your copy of the results.  if they ask do you want a summary report, say sure.  

As mentioned there are many settings, the report will usually have acronyms, the pacemakerclub collective can probably sort out each of them.  But your minimum and maximum are only two of many.  There are settings related to how sensitive the receiver is, how well the pacer hears your bodies signals.  Settings related to the shape of the electrical pulse, the level and duration, and other factors.  If the pulse is too big and set too sensitive, the pacer could hear its own signal and think it is the bodies, this is not good, would be set really wrong for this but just painting a picture.  if the pulse is too small overall then it wont stimulate your heart muscle and not do the job or will do it sometimes and sometimes not, and your heart and mine are not the same so some tweaking is required.  the scar tissue that forms where the tip of the lead is in the heart muscle changes the electrical resistance, this isnt their first rodeo so they know how much to compensate for roughly but they will check that, and you cant rush the healing of that area.  

I have learned from this site that some of the machines now dont print out resutls on paper and you can get a thumb drive with results.  I have not yet experienced that at my doctors office...

Sounds like maybe you have heart block, but ask the doc when you are there next.  I always talk to the doc whenever I go in, I dont knwo that this is the norm everywhere.  Have them tell you or write down what your condition is so you can look it up or ask folks here about it.  100% paced is not something to be worried about.  I have heart block, from birth, first pacer at 19 years old and lucky I made it that far.  clearly I lived with it, but the upper and lower chambers are electrically disconnected if you will they are out of sync like the drummer and the bass player playing two different songs, just doesnt work.  the heart has to work much harder, which is ultimately bad.  the pacer makes every beat work correctly doesnt mean that without the pacer you will die immediately, just means that the pacer is doing is job of keeping the two halves in sync so that they can work much more efficient, much less work to do the same job.  Ive been paced for 32 years, 100% or close to it.  If it wasnt near 100% then I would get concerned in my case.  And that doesnt mean my pacer battery wears out faster than others, they put the right sized battery/device in for the condition, so my pacer is that much larger than someone with say 10% usage to get that same 10 year give or take (a few years) life.

I know you are frustrated about getting back to your activities.  This is the worst of it, the few months per device at the beginning.  You will go many years before you need another, and then its just a few months during which you can do most of the things, but not all.  Having been through it once, the next time is easier.  Implant, few weeks visit, few months visit then annual visits until it gets close (until the report says WEEKS, ignore the prediction, dont get anxious about it) and they might bring you in more often, if you have one of the take home boxes that talks to the pacer then you probably dont even have to come in more often.  Then the cycle repeats, new device, few weeks, few months, annual.

The tough love way to look at this.  Is it worth dying for your activities. or taking a break every several years, so that you can live the next several years to play many more matches?  Id rather skip a tournament or few to save my life.  YMMV.

Another view is your heart should be working better and more efficient, which should help your sport.

Awesome

by Pacer2019 - 2019-11-15 00:17:34

That’s is awesome dwelch and so appreciated by me .  I’m definitely struggling as this hit me between the eyes - I had a goal to win this league in 2020 and was on track to win in 2019 ! 

I have been holding out hope I still could but I think I need to step back - maybe play a little but competing may be out - it’s a very intense sport .... maybe some pickle ball this winter 😬. 

You have been very helpful and don’t be suprised if I seek you out with questions once I even know what to ask !

thank you so much 

Awesome

by Pacer2019 - 2019-11-15 00:17:35

That’s is awesome dwelch and so appreciated by me .  I’m definitely struggling as this hit me between the eyes - I had a goal to win this league in 2020 and was on track to win in 2019 ! 

I have been holding out hope I still could but I think I need to step back - maybe play a little but competing may be out - it’s a very intense sport .... maybe some pickle ball this winter 😬. 

You have been very helpful and don’t be suprised if I seek you out with questions once I even know what to ask !

thank you so much 

Where to start

by AgentX86 - 2019-11-15 08:42:02

You really need to understand your condition. It doesn't really matter how you got here. That's history. But you do need to know where you are.they should have given you discharge papers after your implant surgery, in fact you should be given visit summary papers after each office visit. Your doctors should be discussing your condition and treatment with you (informed consent) but at least there is information in this paperwork. If you're being kept in the dark, fire your doctors. Now.

Since they say you're "100% reliant" on your pacemaker. This is known as being "pacemaker dependent". It's different than being paced 100%. An important distinction. Being pacemaker dependent means that your heart won't beat without your pacemaker, at least fast enough to function (remain conscious). It's not as bad as it sounds the first time you hear it. Pacemakers are incredibly reliable and they're monitoring the battery closely. However, you have to be vigilant for any changes. Some of us have been become PM dependent intentionally - the only way to fix something worse.

The next question is whether you're "chronotopically incompetent", which is EP speak for "your heart rate doesn't change with oxygen demand. If this is the case, your PM has to try to guess your body's oxygen demand and adjust your heart rate accordingly. This is a highly individual. Someone who is athletic needs more oxygen than a couch potato. Someone who is competitive needs even more. Your pacemaker cannot monitor the oxygen levels (or CO2) in the blood, so has to guess from your motion how much energy is being expended, thus how fas the heart has to beat. This has to be ser for YOU and your lifestyle. It's up to you to work with your PM  technician and EP to get this dialed in. It can take quite some time to get right.  They don't like to make big changes all at once. It's all trial and error. You might be able to get them to do the setup when you're exercising on a treadmill but, at best, that sets it up for a treadmill. If you're a cyclist or swimmer, all bets are off.

In short, you really have to understand where you are before you can get to where you want to go. Forget where you came from. That won't get you an inch closer to where you want to be.

this makes sense

by Pacer2019 - 2019-11-15 12:36:12

I do see where this makes sense concerning oxygen demand vs. movement.

Like the other day when I did jog a little - I noticed from looking at my ehart rate monitor when I was tunning my heart rate was very high - more than would be nornal for the level of energy I expended.      Could that be my pacer pushing my rate up in order to meet demand based only on movement?

That kind of makes sense - my max heary rate is 220 - age = 164 - rarely have I ever been in that range for an extended period if at all - its a very uncomfortable place to be and can only be sustained a short time (an anerobic state).

This is excellent information and is greatly appreciated

Some basic answers

by Gotrhythm - 2019-11-15 14:15:17

One tiny piece of information. In your original post you wondered why your heart suddenly started beating so slow, and worried if there was some undiscovered, untreated problem.

Answer: there are many, many causes for electrical heart issues. Most of the time it's impossible to say what the cause may have been. But it probably wasn't anything that you did or didn't do. A heart that's perfectly healthy, free of any disease, can still develop electrical issues. 

And even if you knew the cause, the treatment would still be a pacemaker. We all wonder at first what caused the problem, but there isn't any benefit in worrying about it. It is possible, even likely, that your heart is perfectly healthy.

About a period of adjustment. Your heart is a muscle. Like any other muscle if you ask it to do something different it takes a while to feel good and natural. Your heart's natural "pacemaker" the sinoatrial node isn't working so good, or maybe the signal isn't getting through to all parts of the heart, or both. Anyway, your heart now needs the help of a pacemaker.

Todays pacemakers are very, very good. But they aren't what your heart is used to. Even when a change is a good one, it still takes time to accomodate.

Thanks

by Pacer2019 - 2019-11-15 17:40:38

that is a solid perspective I know I must adopt .

i have wondered if my chosen and preferred physical pursuits contributed .  

I became a devotee of HIIT through the Crossfit community several years ago and even now play or played racquetball which demands same type of heart activity .... a start and stop proposition over and over.

I wonder if I should switch to less demanding activities like walking or pickle ball 😕....chair yoga ....water aerobics .

at this moment I lean hard toward coming back at it harder than ever 

Thanks

by Pacer2019 - 2019-11-15 19:27:47

this is all good information .

my frustration so far is today after reading some comments I decided to call my device clinic. 

The girl there seemed bothered I called . I told her I wanted to discuss settings and confirm how the process works .  She said only the doctor can change settings.  She pointed out at my next appointment I can discuss that with him ....

i really just wanted to talk through things and learn if my understanding is on target .

i was told my appointment is in February and I can do that then .

i said I felt like that’s a long time out and she debated it’s not .

She then asked if I wanted to speak with the doctors nurse ....I left her a message but didn’t get a call back yet. 

Device tech

by AgentX86 - 2019-11-15 23:53:07

They're busy people too but she shouldn't have blown you off like that. I don't know how they run their device clinic but my device tech knows more about the pacemakers than the EPs. The device clinic is actually tied to my cardiologist's office rather than my EP's but an EP in the office signs off on changes after the PM tech actually does it.

I only walk for exercise so don't need a complicated setup.  My HR only gets to 110 (my maximum is set to 130 - EP's orders - but I've never been there) so my settings aren't critical.  I do have issues with stairs, so she works with me on that. The point is that you'll have to figure out how to work with your device tech and EP to get done what you want done,  You'tr not alone.

Thanks

by Pacer2019 - 2019-11-16 00:54:36

my device clinic is in the Cardio practice I go to .

ita a very large practice and I had a cardiologist before the PM because I had a heart bypass 13 years ago - for all those years all I’ve done is show up for an annual visit - have felt petty anonymous but that’s been Ok by me.  I have learned the medical business itself is basically a call us when something is wrong aituation and givea little attention to preventing something from happening - Ita always been my job to so what I can to prevent a problem - nutrition and fitness are what I can control so I do ...I also ask a lot of questions. 

im finding the PM thing is no different - what they say they do sounds great on paper but reality is starting to look very different.  I’m basically on my own - I’m learning some stuff on this site which I really appreciate and I know it will help me. 

Ill vent a little here 

I own a business for over 25 years that is customer service intensive ..... we are very busy as well BUT we know when the phone rings that makes no difference to the customer needing help .....we also don’t have a waiting room full of people booked a year out to see us and pay 💰 ungodly money for our services so we try hard to keep people happy .  I guess I am kind of impatient and not very excepting of excuses .

maybe I need a smaller practice that can be more attentive ?  

One thing I always think about ....I have resources and access to information along with support that many people don’t - some are elderly and alone totally dependent on what ever care they can get..... gets me kind of riled up . 

I’ll keep learning and trying .. figuring out the system - right now I barely even know enough to ask questions or fend for myself - this group is definitely one I can rely on. 

Thanks again 

YES WE CAN FEEL OVERWHELMED AT THE BEGINNING

by Gemita - 2019-11-16 08:59:01

Hello again Pacer2019,

What good info you are getting.  The only thing I can add is that at the beginning we all try to race to get everything sorted, but pacemakers and heart conditions are for the longhaul and may change over time, requiring quite different approaches.  To rush in and apply all the changes at once which we may learn about would not perhaps be in our best interests.

Proceed slowly and carefully, but make sure that your doctors know that you want to be an "equal partner" in your treatment and that you do understand what options are available to you.  We are very lucky to have such knowledgeable forum members who have been through so much and can pass on their technical, professional and personal experience.  Our doctors certainly do not have the time to spend with us to adequately cover all our concerns, so we have to gather as much information as we can to take with us to our appointments.

If you feel unhappy with your current practice I would certainly consider asking for your pacing records and care to be transferred to another centre.  It is vital that you feel safe, well looked after and happy with your care.  If you get unusual symptoms or are concerned at any time and your current practice is not helpful, I would consider going to ER/A&E.  In the meantime, you have got us to lean on

Thanks

by Pacer2019 - 2019-11-16 11:13:28

You are right ....lots of good information. No doubt I am in a hurry to sort things out - one reason being I don't want to digress in my level of fitness....I know how hard it was to get where I am !  Like the clinic tech told me " February isn't that far away "....... to her I'm sure it's not and I'm not sure that's up to her to decide for me.

it really seems like after about 30-45 days I jump back in as tolerated and see what happens. It seems doubtful these busy folks will do anything other than respond to symptoms of problems-  very unlikely the settings I have will be anything other than standard until I engage in activity that shows otherwise. 
 

right now I am wondering ........ last week I jogged a slow very short jog . My heart rate went to max per my Garmin data which is unusual - did the pacemaker do that ? 
can I contact the clinic and have them look at my numbers at that specific time ? This is another area I don't understand ..... is all data available to them 24/7 or do I have to send a transmission ? I am using the Medtronic app.... are they able to access data or is a transmission required ? 

Thanks

by Pacer2019 - 2019-11-16 15:47:21

Thank you - so when I send in a transmission what is sent ?  Data over what period of time ? Last 24 hours ? 

Time

by AgentX86 - 2019-11-16 20:05:52

Data since the last transmission or since it ran out of space to record the data.

recovery re sports

by LynnClaire - 2019-11-28 11:53:01

Lol- saw your comment re pickleball with a sad face emoji- I gave up tennis when we quit our country club and reluctantly switched to pickleball. That was 8 months ago and now I love it. We have lots of former high level tennis players and lots of former racquetball players in the group. I was playing 3-4 times/week for 3-4 hours each time and having a blast. Then 3 weeks ago I started feeling a little light-headed and out of breath. Everything was fine until then. Turns out I had arrythmia and as of 2 days ago I now have a pacemaker. Just out of nowhere. I can't wait to get back into my sport and I hope it doesn't take 6 weeks like the cardiac nurse told me. I was shooting for 2 weeks! Anyway, don't knock the pickleball idea until you've tried it!