Day 3 post op.

I'm so grateful to be able to read the posts and wonderful,  supportive, informative responses. I'm not sure if I'm unrealistic in my expectations, or if if I need to find a different doctor. I feel I'm alone.

The hospital told me to go back to my cardiologist for follow up and not the EP who did the implant. I said I couldn't imagine that he would provide monitoring of the settings, etc. I thought he referred me to an EP for that part of my care. They said I had to go to the cardiologist for wound check this coming week. That's fine. After my insisting, they said I could make an appointment with the EP in 3 months. 

So I'm sitting here with this new thing in my body and I'm learning all about adjustments and I don't get to see anyone for 3 months? I don't even know when I'm allowed to resume daily walks. 

I guess I'm a weenie, but recently I've read about shocks at the interrogation and discomfort at the HR being changed rapidly. Honestly, I wasn't sure about a PM because I didn't like having no control. For two days in a row between 11am and 1pm I felt strange; jittery, a little dizzy and mildly nauseated. And this is embarrassing but two days in a row, one cheek (maybe flank is more delicate) twitched for 10 minutes. 

I know I can't automatically blame things on the PM, but when things start happening the same time daily, and I have a computer in my body, I wonder about a connection.

My 2 days of pain medication are   almost done. The NSAID helped but I can't take now because I'm back on the blood thinner. Tylenol doesn't help. I feel angry because my friend had a wisdom tooth pulled last week and he got 7 days of narcotics. I'm not minimizing any pain but I can't get past how I had to really advocate for even two days worth. I have hours that are fine, but there are hours of true discomfort. 

I apologize for ventilating. 

 

 


7 Comments

It will get better.

by cardifflass - 2020-11-15 06:38:12

Hi, don't appologise for venting!

My story, a bit further along than you, which I hope will give you some encouragement.

I had my PM on monday the 10th August and saw my practice nurse on the friday for a wound check (no need to go to the hospital) and could leave my dressing off as I healed so well.  

When I was discharged from hospital on the 11th I had an x ray and an echo to check all was well and the EP told me they would see me in 3 months at clinic.  No sling, no lifting above my elbow but to continue with gentle movement to avoid a frozen shoulder.  The cardiologist told me to wait 6 weeks before getting back to my rowing machine.

I had the device clinic apointment last weekand I was 'downloaded'.  The technician warned me that she was going to change the rates etc. and that I might feel a bit 'odd' or unwell briefly. As it happens I hardly noticed it.  Everything was ok and my fears that I might have ripped out my leads through rowing were unfounded.   In practice, with good technique it is no more dangerous than a heavy bout of ironing and hoovering.

It does get better.  I felt rather battered at first and the bruising was interesting though not as bad as I'd expected.  Now I only notice it first thing in the morning, perhaps because of the way I've been lying in my sleep.

As for painkillers, all I've had is paracetamol, I can't take codiene as it gives me palpitations (ha Ha).  I take it regularly.  I'm not sure what you have, but don't be a hero.

I can't see any reason not to resume your walks, (not medical here) just don't go too far first time out, if only for your own peace of mind.  You should have a number to call in case you have problems, please don't hesitate to use it.

It really does get better, honest!

 

 

Thank you!

by Pharnowa - 2020-11-15 10:04:12

I appreciate your sharing your experience.. if waiting 3 months is usual, I'm fine with that. I would gladly use pain relief temporarily, this NP didn't seem to believe  this level of pain warranted it. 

It's so helpful to know experiences of others as it keeps things in perspective. I'm glad you are doing well!

I Think These Days Are The Hardest

by Marybird - 2020-11-15 10:23:35

I'm just a fellow pacemaker recipient so no expert here, but my impression from reading your post is that besides the "shock and awe" of having a metal device that controls your heart rate implanted in your chest, and the very natural reaction to the surgery that put it there, you're also feeling set loose, ie, left to your own devices ( abandoned, maybe?) with a lot of uncertainties and questions. I think that's got to make things seem worse than they probably are. And you're only a few days out from your surgery, it's still painful, or at least uncomfortable, as you are healing, and your heart gets used to the pacemaker and vice versa, but it will get better. 

I guess EP practices are all different, so perhaps the EP who implanted your pacemaker was acting purely as a consulting surgeon and wasn't expected to provide continuing care or pacemaker management ( seems strange to me, but what do I know?) perhaps that's the reason you were referred back to your cardiologist for wound checks and continuing management of your pacemaker. Even still, it seems odd that you wouldn't have at least one more followup visit routinely with the EP, to see how things are going and for adjustments you might need to optimize your pacemaker's functions for you. That followup often occurs at 3 months post implant. Wound checks 7-10 days post surgery are generally done by the nurses, those in your cardiologist's office will know what they're looking at and can answer your questions about the surgical site. In your shoes I'd probably ask your cardiologist all the questions you have, anything they can't answer can be referred to the EP. And you do have your 3 month followup with the EP. 

It's entirely possible your cardiologist does have the interrogation equipment to conduct routine pacemaker checks in his/-her office. They also work with the pacer techs from the manufacturers-`these guys/gals are the real experts in terms of settings, etc. to optomize your pacemaker functions for you.

I haven't had many in office pacemaker interrogations ( have had my pacer for close to 1.5 yrs) but those have been entirely painless, and other than reading of an occasional person complaining of discomfort or something during an interrogation, it seems to me most people don't feel much of anything during interrogations. I wouldn't worry about pain, or shocks during this process. I've felt only gentle flutters when they ran my heart rate up over 150 ( though I have episodes of atrial tachycardia all on my own so flutters are kind of second nature to me, LOL).

If you have not yet, they will probably set up remote interrogations for your pacemaker. This will probably involve a monitor that sits on your nightstand, your pacemaker communicates with the monitor via bluetooth technology ( you don't feel that either) and the monitor sends pacemaker reports via cell phone/landline to a secure website available to your doctor.. This should all be explained to you by your cardiologist. Honestly, once this is all set up, and time goes by, you can go about your daily life, blissfully unaware that all this is going on, as your pacemaker makes sure the beat is going on as it should.

I don't know if they will give you any more narcotic pain meds, that's a whole 'nuther issue,  I found Extra Strength Tylenol ( its generic equivalent) very effective in controlling the pain I had post surgery, and I found that the Tylenol PM helped me sleep at night during those first couple weeks. I don't know if the benedryl in the Tylenol PM is contraindicated with a bloodthinner, but if not it might help.

Wishing you the best of luck, the support and reassurance you need to get you through this, and on to much better days!

Mary

 

 

 

 

 

 

 

EP vs. cardiologist

by AgentX86 - 2020-11-15 13:39:55

I think Marybird is on the right track. If your cardiologist referred you to an EP for your PM, perhaps there is no reason to go back, unless you have more symptoms of electrical problems. I, however  you've been seeing an EP for some time because of Afib, or some such, you'd stay with an EP,  likely in addition to your cardiologist.

Three months wait for an appointment with an EP isn't ridiculous, assuming there is no immediate need for his services. I see mine once a year, now. The device clinic is in my cardiologist's office and I'll be back there for an echo cardiogram in a couple of weeks. That information will be forwarded to my EP. I don't see him until next July.

There is nothing wrong with NSAIDS for pain as long as it's not for an extended period. Every once in a while my knees will act up. The only thin that even touches the pain is ibuprofen. Often two pills a day wipes out the pain, if not for good, a day. My cardiologist has no problem with this as long as it doesn't become a regular thing. Others have said theirs has put a limit on NSAIDS of a week.

As far as a lump of metal controlling your heart, just imagine a life without it (as short as it may be. Wrap your head around it and move on. Seek professional help if need be.

 

Thank you, Mary!

by Pharnowa - 2020-11-15 21:55:15

Thanks for your insight and wisdom. I truly appreciate it!

Pharnowa

Expectations.

by Pharnowa - 2020-11-15 22:46:57

I expected much better care. I never saw the doctor after the procedure. The PM tech dropped off a box with the monitor and said he had to get to an appointment. I had to call the company to find out the device name. I know no setting information. To have to wait three months to get further info seems unreasonable to me, but not rediculous. I was not told who to call or what circumstance should prompt me to call. My chest is bruised.. At some point I don't think it inappropriate to want someone to tell me even why this pain. If it's standard, then I should have pain relief. The NP said shoulder pain doesn't merit a narcotic and a PM doesn't, only a defibrillator. I'm going to guess she's never had her rotator cuff repaired, or a PM. This is my third day of pain. I expected pain relief. No one operates optimally when they are in pain.

I have been told by 2 physicians, including a gastroenterologist, that due to my cirumstances, I cannot take NSAIDS and Eliquis together. I was off Elliquis for 36 hours after the procedure and I did take the NSAID. It did help. 

Thanks for your response.

 

 

EP

by AgentX86 - 2020-11-16 13:03:38

I think you're being a little sensitive, though you have been treated shabbily and your concern is understandable.  As I said before, three months isn't absurd if you were referred for surgery by your cardiologist.  That is, if you haven't been a patient of the EP for some time.  If this is the case, he's essentially a hired gun for your cardiologist.  I never saw the EP who did my implant, before or after and don't even know his name.  My EP was there and doing an ablation at the other end but I had no idea who the surgeon who actually did the implant was.

Yes, I have seen my EP many times since, but I was a patient of his for three years before I got my PM.  He was following up, not so much on the pacemaker, but to make sure the other electrical issues were taken care of.  Other than once a year checkup, my cardiologist has taken over everything and will referr be back if needed. 

All that said, there is no excuse for them do dump the box in your lap and tell you to figure it all out.  They should have given you a temporary pacemaker card with the model and serial numbers of not only the pacemaker but the leads they inserted, as well.  They should have also given you a schedule of dos and don'ts.

The answer of pain with a defrillator vs. pacemaker makes no sense.  The only rational conclusion I can draw is that she was answering a differetn question than was being asked.  Perhaps a step off.

Pain management is a real problem in the US (and I suspect much of the world) right now.  The use of narcotic pain meds has been far too liberal for years.  Many have had their lives ruined and the government is getting quite testy with some doctors who prescribe opiates liberally.  Unfortunately, it does leave some who need it, without.  The risk with eliquis and NSAIDs is generally small but you seem to be in the group that it isn't so small.  NSAIDs can be pretty tough on the stomach and digestive system.  Anticoagulants can make a manageable problem very serious.  If your gastro says "no", I'd beleive him.  Otherwise...  My cardiologist isn't happy when I take ibuprofen but doesn't tell me to never take it either.  A life of pain isn't much of a life - "Just be reasonable".

 

You know you're wired when...

Your ICD has a better memory than you.

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