Pacemaker Log - 6 weeks post op, and lead has detached... Again...

Hi All, was planning to write a nice 6-wk post op piece to my continuing log, even though things have been a bit 'odd,' but at the appointment with my cardiologist yesterday he became very quiet while fidgeting with the interrogation, replacing wires, etc (saying they were for a different brand pacer)... I knew something was not going well...

He ordered labs, an echo, chest x-ray, a next day appt (today) with the Biotronik tech, prescribed different diuretic for new edema, and a one-week follow up... So today the tech asks me if I  know why I'm there, which was weird, like she's testing my knowledge of the situation and not doing or saying much.  Then surprise, the cardiac surgeon comes in - so I knew for sure then  what was happening: that darn atrial lead detached again and is pointing straight down wherever, as seen in the films... Need to go in again soon (couple weeks) to replace the lead/tip, and maybe with a different type which won't be MRI compatible. They needed to discuss, so I was dismissed for today. No wonder I felt no improvement, only same issues.

As the primary caretaker for my husband and myself, I'm really hoping:

1-There's no issue removing and replacing the defective lead, or need to just leave it there unattached.

2-The surgeon does a much better job with this third incision and it heals well.

3-I'm doing OK with using this new Biotronik equipment, and the new lead, and new type of tip.

4-I don't get ignored if I keep repeating the issue of strong torso "punches" (diaphragmatic pacing punches when leaning/lying on right side). It was turned off today, so maybe I can sleep on my right side again, finally, yay.

5-I don't need to go elsewhere to start all over.

Anyway, Glad I'm just winded and not passing out - Doc is not available next week or two...

Sheesh, what else should I ask, expect, and prepare for now?? Almost laughable (third incision in 6 wks), except that my husband and I seem to be the only ones having to be put out and be good soldiers, etc... Plus another healing process, some anxiety, and those restrictions all over again (just paid for new pool membership too!)... and perhaps the insurance company won't be thrilled either...

No worries, just a lead, right? Hanging tough atm... Maybe I can swing a private room and extra jello for my trouble...

7 Comments

So sorry this as happened to you again

by Adagietto - 2017-06-16 00:34:57

I'm sorry you have this to go through again.  

You sure do get an A+ for your attitude!

Hope they get you fixed with no further complications.

My very best wishes to you.

yikes

by Tracey_E - 2017-06-16 12:22:59

Sometimes the heart muscle doesn't like one kind of lead, sometimes our heart is shaped so that it's hard to find a good spot. And sometimes the surgeon is just not good at dealing with the first two options. I would at the very least get a second opinion before letting the same surgeon open me up for a third time. YMMV. 

1. Leads come out very easily for the first year, so no big deal there. 

2. They should go in the same place, not make a new incision. 

4. that's a red flag to get another opinion. 

5. that's not necessarily a bad thing, esp if it reduces the odds of this happening all over again. 

second opinion

by Gotrhythm - 2017-06-16 13:21:01

What Tracey said.

Once--okay, stuiff happens.

Twice? There's obvioulsy a problem and you've got to question if the surgeon actually knows what's wrong and how to fix it.

Rooting for you.

PS

I'd give you an A+ for attitude too. But that doesn't mean you should tolerate the intolerable.

Another Dr

by TBrous&Chip - 2017-06-16 18:56:35

I would definitely pursue another doctor for a 2nd opinion at a minimum.  Current doc could also refer you to another doc so you can get this over with.  What happens if you are in distress in the next 2 weeks?  Another doc will have to care of you.  Maybe you can find a doc in a group of cardiologists who will accept you as a patient so you can have continuing care even if 1 doc is out of town.

Hope all goes well for you

Been researching...

by JoJo B - 2017-06-16 20:02:34

Thanks for the help everyone! Been working to look at the EPs and cardiac surgeons among the five hospitals in the area... Turns out this doc currently works (or previously worked) at all of them, is well known everywhere in the radius I can reasonably travel. I again asked him directly if it might be good to have the procedure done at the city hospital (rather than the country hospital we primarily use), and if it would be good to have a plastic surgeon nearby, etc (we don't have one at our hospital, and he knows I don't like the scar from the second incision)... He said no, not necessary. We are in a country-ish area served by 3 hospitals that have all been absorbed by a large medical care conglomerate, and he said all the processes are the same whether I go farther away or not. He also works out of the other 2 hospitals outside of that system, so I have nowhere else to go where he won't be supported... His name is associated with all of them of course, so now that I've brought it up I'm hoping the unusual nature of the matter will prompt him to ensure all the best plans and care are provided. Saw him in passing today, he said "they" are still working on determining what different lead/tip to use to better ensure adhesion in my case, which sounds like the right thing for him to be doing.  *sigh*  I'm just getting really tired and frustrated and want it all over with.  I'm not intimidated, but feel no real choice but to trust his 20+ years experience once more to do a good job in replacing this lead so I can stay close to home. I also plan to boldly be the infection-fearing patient. After all this, it's still just a relatively minor procedure with 95.5% successful outcomes, right? 😷🙏🙂

Lead replacement

by TBrous&Chip - 2017-06-17 00:02:24

Hard to understand why your doc cannot just get with PM manufacturer and make a decision concerning new lead. While he is delaying you are the person in discomfort.  

Bottom line is you have to have full confidence in your cardiologist just like you would any other physician.

Delay

by JoJo B - 2017-06-17 09:16:18

Yup, he's doing that, per the meeting with the three of us Thursday when they gave me the joyful news. As of yesterday he didn't have new info or an op date scheduled, so I'll prob get a call next week. That might also give me a bit of time to still seek out a conference with another EP in a large cardiac specialty facility in the city, even if they know each other and work in the same system. Worth a try... plus need to make arrangements for things at home for my transportation, time away, and recovery (family is dealing with a recent loss of loved one, so treading lightly for them).

 Thanks Tee!

You know you're wired when...

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I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.