Pacemaker replacement w/in a year

[Gnusgal]

Okay, I know it's rediculous to be afraid of something so minor, but I'm a little worried. I have had four surgeries since starting on coumadin, and I've had four pacemaker surgeries (all before coumadin). So you'd think this would be no problem. But of the surgeries I've had since starting on coumadin, one was for a burst ovarian cyst in which I was bleeding into my abdomen to the point that I needed 4 units of blood tranfused because of the blood lost. It was emergency surgery, obviously. The next surgery I had was an ICD placement. Following that surgery, I developed a hematoma at the site. They had to go in to surgically remove the hematoma. After that I developed an infection and had to have the ICD removed. Needless to say, none of the surgeries I've had since my VR have been in any way a good experience.

So when I went to get my pacemaker checked and was told the predicted life was around 8-18 months (they guess 14), I actually expected it. But at the same time I've been sort of dwelling on the "what if." What if I develop another hematoma? What if things don't go as smoothly as they did prior to coumadin? I know I've got a long time left to dwell on this, which is why I should probably get over it. But I just can't help it. I've never had a problem with surgery before. It's really just been since the hematoma/infection that I've started kind of freaking out about going in for surgery.

Anyway, I just thought I'd put that out there and see if anyone had any advice for getting past this fear.

Thanks,

 

[Karlynn]

Niki, dear, I don't think anyone will fault you for worrying about this, given your past history. But I'm believing that this will be a case that just because you go into it expecting complications because of all that's gone before, it will go so smoothly that you'll be left in mild shock. No one wants to have to deal with the tough stuff, but you have gone far beyond proving your Wonder Woman status, so I know you've got it in you to face this fear head on.

I didn't reaize that pacemakers had such a short "shelf-life".

 

[Kathleen]

Niki
I have had my two mechanical valves for 21 years so coumadin has been with me for quite some time. I had to have a pacemaker implanted two years ago and also developed a hematoma. The pacer needed to be explanted and an ICD implanted due to a sudden cardiac death episode last August. I again developed a hemtoma. Actually not to mince words it was as big as a freaking softball. Unfortunately I do have photos. The surgeons and EP doctors got together and decided it was to risky to try to remove it so I used pressure bandages 24/7. The hematoma slowly, very slowly began to be reabsorbed into my system. It did take a full 6-7 weeks for it to become almost normal. The funniest thing I remember was that I had purchased a dress for a wedding we were attending prior to the ICD placement. When I put the dress on there it was there in all it's glory. I wore it anyhow and had more people talking to my hematoma than to my face. They will be careful with your coumadin doseages before during and after. I spent a week in the hospital for the entire procedure. Do you have a sub pecotral implant? What brand do you have? Any shocks so far? It will be fine since getting or not getting a hematoma is not something one can control.
Kathleen

 

[Gnusgal]

I didn't reaize that pacemakers had such a short "shelf-life".

I have complete heart block and am 100% pacemaker dependant in my ventricals. So it's working all the time. Which means that I drain the battery a lot faster than someone who just needs it once in awhile. My first pacemaker lasted 6 years, the second lasted 7 years, then the third and fourth have each lasted about 5 years. It's annoying, but I guess it's better than the alternative...

Thanks for the encouraging words... I know I've been through a lot and will probably get through this just fine as well. But it's annoying that something so "minor" has me shaking in my boots when open heart surgery was hardly a big deal.

 

[Gnusgal]

Niki
I have had my two mechanical valves for 21 years so coumadin has been with me for quite some time. I had to have a pacemaker implanted two years ago and also developed a hematoma. The pacer needed to be explanted and an ICD implanted due to a sudden cardiac death episode last August. I again developed a hemtoma. Actually not to mince words it was as big as a freaking softball. Unfortunately I do have photos. The surgeons and EP doctors got together and decided it was to risky to try to remove it so I used pressure bandages 24/7.

Okay, that doesn't make me feel better. I guess I should pretty much expect a hematoma, then? I guess the hematoma itself wasn't the horrible part (though certainly painful!), but the infection I ended up getting after they removed the hematoma. Now THAT was pain!!!

Do you have a sub pecotral implant? What brand do you have? Any shocks so far? It will be fine since getting or not getting a hematoma is not something one can control.

Actually, my current pacemaker is in my abdomen. The ICD was implanted in my shoulder, but it was just under the surface of the skin. When they implanted the ICD, they left the pacemaker in, so that they wouldn't have to cut me open in two places. They just turned off the pacemaker. Turned out to be a good thing, since they had to take the ICD out less than a month later, due to the infection. They were able to just turn the pacemaker back on, rather than risk putting in another one while I had the infection. I'm not sure what they will do this time. I haven't talked to my cardiologist about it yet. I just saw the Medtronic Tech for my pacer check. I imagine I'll try to talk to my card some time soon to figure out what we will do: put in a new ICD, just replace the pacemaker, or what. Who knows?

 

[Guest]

But it's annoying that something so "minor" has me shaking in my boots when open heart surgery was hardly a big deal.

Hmmm...I know how you feel.

Ironically, with all of the stories I've read about bad experiences in having a pacemaker replaced, I'm sssoo not looking forward to having mine replaced sometime in 2007. I think I'm more "worried" about that ... than I ever was for the last open heart surgery.

Thoughts/prayers coming your way, Niki.



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"How do we explain something that took us by surprise?" ... Richard Marx ... 'Hold Onto The Nights'

 

[gijanet]

Hey, you............

Hey, you............

You're supposed to be on vacation and not worrying about crap like this!!! What kind of vacation is that???? Hmmmmmmmmm.........too much time to play headgames, I guess. I know. I'm an expert at that, too.

Listen, my dear, I don't blame you a bit about worrying, but it is not going to do you one bit of good. YOu will just get old like me...............and you're already bumping 30!!! Heehee! Sorry, had to do that!

Now, let's do a bit of analyzing and detective work. First surgery with the burst ovarian cyst doesn't count.................that was an emergency surgery so your INR was still high. Can't help on the hematoma............did any of the docs ever offer an explanation, or was it just one of those things?

The infection is the one I think we could have avoided............and weren't all three of those latter experiences tied to one Dallas hospital? Maybe going to another hospital would help...........one that has better infection control. Can you still go back to Texas Children's? or maybe even Dallas Children's, but I don't know if Dallas has an adult chd group.................dunno, you know my inane ramblings in the middle of the night.................just trying to make you feel better. SEnding ((((hugs)))) and some Tylenol PM (not that it ever works for me................heehee! ) Love ya. J.

 

[Gnusgal]

You're supposed to be on vacation and not worrying about crap like this!!! What kind of vacation is that????

I actually just got back from my vacation. It was only a few days.

As for going to a new hospital, it might be a possibility, but I'm not sure yet. I still need to figure out what my card wants to do about an ICD or where the new pacemaker would go (shoulder or abdomen). I DID change electrophysiologists because I just couldn't bear to go to the woman who started the whole mess again. I realize she didn't give me the infection, but she is the one who didn't give the insurance company sufficient information and now they say the procedure was "experimental" and won't pay for it... Sorry, but I sure didn't decide to have a $103,000 "experimental" procedure done on myself so that I could be hauled off to debtor's prison... Anyway, I just can't face her anymore, so I finally went to a new doc. It had been nearly a year since my pacemaker had been checked, which was WAY overdue. But I'm sure others can understand my aversion... I'm not sure which hospital this new doc works out of. Or if he'd even be doing the surgery. It's all pretty up in the air right now, but I can't seem to help worrying myself.

 

[Guest]

Niki,

I don't blame you for not looking forward to the surgery. However, you have been through it before and you will make it through it again. And probably several more times during your lifetime.

You are one of my heroes. You go through all of this and still find a way to inspire our youth.

This made me think of another heroic guy. I suddenly went from taking care of his patients to taking care of him. This is in today's Pueblo newspaper. Please look at http://chieftain.com/life/1152975423/1

 

[Liz]

Niki - I don't have personal experience with pacemakers so I can't address your concerns about that, but I just wanted to let you know that you are in my thoughts and prayers. Seeing you surrounded with loving, healing light, finding the information that you need, feeling confident in your medical team, feeling at peace with what lies ahead, and coming through it all with flying colors. You are not alone.

(Thanks, Al, for sharing the inspiring newspaper article.)

Love,
Liz

 

[gijanet]

Yes, I'm behind as always............sigh!

Yes, I'm behind as always............sigh!

I I realize she didn't give me the infection, but she is the one who didn't give the insurance company sufficient information and now they say the procedure was "experimental" and won't pay for it... Sorry, but I sure didn't decide to have a $103,000 "experimental" procedure done on myself so that I could be hauled off to debtor's prison... Anyway, I just can't face her anymore, so I finally went to a new doc. It had been nearly a year since my pacemaker had been checked, which was WAY overdue. But I'm sure others can understand my aversion... I'm not sure which hospital this new doc works out of. Or if he'd even be doing the surgery. It's all pretty up in the air right now, but I can't seem to help worrying myself.

Oh, what a mess, my dear..................I know all too well about those insurance battles............just keep fighting my dear...........on all fronts. Listen, you love your card and have a wonderful relationship with her. Have you talked all this over with her? Maybe she has some ideas. Just a thought. Love ya lots. Keep us posted. Hugs. J. P.S. Finally got those pics downloaded from the adult chd gathering. Will try and send them to ya soon. Hugs.

 

[John & Joann]

Joann has had the 2 mechanical valves for 35 years. (replaced once). The is on her second pacemaker. Cleveland Clinic will replace the pacemaker hot (on coumain at 2.0) if the leads are still good. They have found that this can be done without any additional risks. Our local hospital/physicians require you to be off coumadin for 3 to 5 days before battery replacement. Since Joann has already had 1 stroke and many TIA's, she will not go off coumadin.

Her experience with the replacment was very good. She was kept in the hospital for 2 days. In our opinion, this was mostly for observation for any problems. She did some bruise issues, but it was fairly mild.

Hope that this helps!!!

 

[Guest]

Joann,
Glad to hear that it went well. Bruising is nothing compared to a stroke!!!

 

[Gnusgal]

Now I do admit that I'd much prefer a bruise to a stroke... However, since most of my problems while being on coumadin have leaned toward the bleeding side, I'm not quite as worried about that somehow... I will certainly have a lot to talk over with my card the next time I have the chance.

I missed a call from her office today, actually. I need to set up a MUGGA scan for some time in the next couple of weeks. Oh, the fun never stops, does it...

 

[Guest]

Bleeding always stops.

 

[Gnusgal]

Bleeding always stops.

Tell that to my ovarian cyst that nearly killed me...

 

[Guest]

Oh, the fun never stops, does it...

*grins*

NOPE! {written VERY confidently!}

He heh.

Aye ... but I know what you mean, Niki ... all too well .

 

[twinmaker]

Niki, I couldn't believe that I was reading about someone on our site that went through the ruptured ovarian cyst thing. That very thing happened to me back in 1983. Bleeding into the abdomen, emergency surgery, and the only time a surgeon ever told my family that "we almost lost her". After all these years, it's nice to meet someone who has had this happen also (even under these circumstances). I also have had three pacemaker/defibrillator surgeries under my belt all after starting Coumadin. I too, am pacemaker dependent. I also had a hematoma after the first surgery, but thank goodness, it resolved on it's own without having to go back in and drain it. I came off the Coumadin and had a Heparin drip for the first pacemaker. The second and third surgeries were for a pacemaker and then finally a pacemaker/defibrillator. For these surgeries, my Coumadin was stopped a day or so before surgery (had bad experiences bridging with Lovenox in the past for other procedures) and since my INR wasn't low enough, I was given platelets to get it down to right level for surgery. I had a slight allergic reaction the first time to the platelets and the second time the allergic reaction was much worse...hives and breathing problems. All this to say that when it's time for my current pacer/defib to be replaced, I'm demanding that we go back to the old standby...a Heparin drip. I know that means extra days in the hospital and probably a fight with the insurance company, but it seems to be the lesser of the evils, at least for me. Everybody reacts differently to things, and I'm sure there are people who do well with Lovenox or platelets, etc. I'm not trying to scare you with all this info, because for the most part, the surgeries for the pacers/defib. went well for me. All three times, they were implanted in my upper left shoulder/chest. I know you hate having to deal with these repeated surgeries...I do too. But it beats the alternative and we know what that is. But I really do understand your apprehension. We're all here for you. LINDA

 

[Gnusgal]

Niki, I couldn't believe that I was reading about someone on our site that went through the ruptured ovarian cyst thing. That very thing happened to me back in 1983. Bleeding into the abdomen, emergency surgery, and the only time a surgeon ever told my family that "we almost lost her". After all these years, it's nice to meet someone who has had this happen also (even under these circumstances). I also have had three pacemaker/defibrillator surgeries under my belt all after starting Coumadin. I too, am pacemaker dependent. I also had a hematoma after the first surgery, but thank goodness, it resolved on it's own without having to go back in and drain it. I came off the Coumadin and had a Heparin drip for the first pacemaker. The second and third surgeries were for a pacemaker and then finally a pacemaker/defibrillator. For these surgeries, my Coumadin was stopped a day or so before surgery (had bad experiences bridging with Lovenox in the past for other procedures) and since my INR wasn't low enough, I was given platelets to get it down to right level for surgery. I had a slight allergic reaction the first time to the platelets and the second time the allergic reaction was much worse...hives and breathing problems. All this to say that when it's time for my current pacer/defib to be replaced, I'm demanding that we go back to the old standby...a Heparin drip. I know that means extra days in the hospital and probably a fight with the insurance company, but it seems to be the lesser of the evils, at least for me. Everybody reacts differently to things, and I'm sure there are people who do well with Lovenox or platelets, etc. I'm not trying to scare you with all this info, because for the most part, the surgeries for the pacers/defib. went well for me. All three times, they were implanted in my upper left shoulder/chest. I know you hate having to deal with these repeated surgeries...I do too. But it beats the alternative and we know what that is. But I really do understand your apprehension. We're all here for you. LINDA

YES! Finally someone who understands! It is the complications and "what ifs" that have already happened to me that have me worried. I know that there are other "what ifs" to worry about, but I can only handle so many at a time.

When my ovarian cyst burst I ended up having to have emergency surgery to stop the bleeding and remove the cyst, drain all 2 liters of blood from my abdomen, and got a transfusion of 4 units of blood! I'd had many surgeries prior and never needed a transfusion. I didn't realize just how bad everything was until I tried to go back to work too soon. That's when it hit me just how weak I was from all that trauma.

I'm trying to remind myself that some hematomas do reabsorb into the body, even though mine didn't (it just kept getting bigger). Hopefully IF I end up with one that will be the case. If it isn't, I certainly won't let a certain doctor even step into my range of vision!

 

[Guest]

Niki,

You were almost to the point where the bleeding would have stopped - one way or another.