pacemaker? & adjusting to coumadin?

[pikacat]

well, i had my last appointments today prior to surgery. i did have one last surprise. surgeon said there was a chance i might get a pacemaker. he made it seem like pretty much a non issue. however, is there anyone in this forum with a pacemaker who can tell me what having a pacemaker is like?

also, i know this is different for everyone, but was adjusting to coumadin difficult at all? i got the first taste of my surgeon disagreeing with my cardio today regarding what could be done with my anticoagulation therapy. what were the biggest surprises in adjusting to anticoagulation? i was reading someone's blog who just had valve replacement surgery, and she posted about a major nosebleed that she attributed to coumadin, which seemed surprising to me. i'd like to know what to expect in the first few weeks post surgery and on anticoagulation therapy. thanks!

sorry for asking so many questions.

 

[Luana]

Hi Pika,
My surgery was in Nov and my INR has been pretty stable, with the exception of when I first came home. I was taking amiordarone, which does interact with the warfarin, and I had a home-health nurse who had a home testing machine that didn't work right. Finally got correct INR results when I went to ER (for SOB), so things weren't awry for too long.

I came here for help with it, and have basically been good ever since. I haven't modified diet at all. Love veggies and salads, and eat freely of them.

You might have a few ups and downs initially with the ACT, but most likely you'll do just fine.

 

[pikacat]

yeah, i really don't want to modify my diet because i'm stubborn and lazy. i eat meat very infrequently, pretty much only on special occasions. so i hope i can keep my mostly vegetarian diet.

i found the gushing blood story on that blog kind of alarming and i hope that was a weird anomaly. thanks for your reply!

 

[Ross]

yeah, i really don't want to modify my diet because i'm stubborn and lazy. i eat meat very infrequently, pretty much only on special occasions. so i hope i can keep my mostly vegetarian diet.

i found the gushing blood story on that blog kind of alarming and i hope that was a weird anomaly. thanks for your reply!

The largest single factor affecting ones INR is the person managing the patient. None of these folks seem to be on the same page, which is why many of us have taken the bull by the horns and begun doing it ourselves.

Vegetarians are a little harder to manage, but not impossible. So long as your at least semi consistent in the things you eat, you should be fine and stable within 4 to 6 weeks after surgery. Of course, this is if your not put on something like Amiodarone. That can mess you up for a while.

Gushing bloody story of that blog?? I think I need to read this. Where is it?

There is far more myth, then truth, about anticoagulation out there.

 

[AgilityDog]

Pika, I received a pacemaker 10 days after my OHS. I had had a maze procedure for severe a-fib along with my MVR.
2 years later I received a defibrillator because I tend to go into v-tach. Same issue, different chamber, as you know, but the v-tach can be fatal.

I am 100% pacemaker dependent, as I have complete heart block. I am very active, training and showing my dogs in agility and obedience. Agility is a 60 second or less sprint around an obstacle course.

There were lots of tweeks to be made to my pacer when first installed, to get it to where it optimized my function. At first, I was limited to 130 pbm. That proved WAYYY too low a rate to permit me to be active. I'm now set with a top rate of 155. For me it has to stay rather low because my v-tach started at about 170 or so, and ramped up quickly.

One issue with a pacer or defib is that they are vibration activated, at least in part. They can be a little slow to respond to demand, or they can respond too quickly. This response time can be adjusted also.
My electrocardiophysiologist says that I can tap on my pacer a bit prior to an agility run to get the heart rate up so I have enough blood flow and oxygen delivery for my run. I did that for a while, at least until this aortic valve regurge got worse. It did help. Remember, I'm sprinting, trying to keep up with a large fast dog, while turning, twisting, and shouting commands. Lots of demand there.

If you are doing something more long term, like walking, jogging, biking, you may feel some strain/resistance/not quite up to speed-ness as you warm up, but after a minute or so, everything works just fine, and the pacer keeps up with demand. You just have to optimize your settings. Some pacers may have more adustment capabilities than others, so be sure to discuss your activity level with your cardio and EP before surgery so they can select the best model for you.

Other issues: Ask the surgeon to set the pacer where it won't fall into your armpit when you lie on your side. It is more comfortable and makes it easier to find a brassiere if the pacer is not at the edge of the chest where the bra straps rub on it or on the wires. You may have to buy a whole new set of bras, if you are small chested, 'cause the pacer is about the size of a cell phone (no, not a smart phone, the older, fatter models). I don't think male surgeons think about that. I had no problem with my pacer, but the defib is in a bad place, and will get moved over next time it gets replaced!

 

[Nancy]

I think you should clarify with your surgeon about whether he meant a temporary pacemaker that many people get while in the hospital, or a permanent pacemaker. The temporary ones are usually removed prior to going home.

Regular pacemakers are not big at all.

Joe's pacemaker was not the size of an older cell phone. Perhaps the defibrillator is the reason it is much larger.

Joe's was about 1-3/8" high and 2" long and very thin. Most of the manufacturers are about that size. His was just a regular pacemaker and didn't protrude much at all and after it healed into place, he never felt it. It was a lifesaver for him.

Here are some pictures and information about pacemakers

http://tiny.cc/gxh13

 

[pikacat]

hey nancy, he had meant permanent. he said the only big deal would be changing the battery every bunch of years, so that sounded permanent to me! thanks for the info on them!

 

[Nancy]

Those batteries last a very long time, if you don't use them 100% of the time. I was amazed at how long they last. Too bad we can't get those kinds of batteries for kid's toys!

 

[AgilityDog]

You are right, it's my defibrillator that's so large. The pacer was about 30% smaller. Still, big enough if you are a relatively small person like me.
Even with 100% dependency, mine needs changed out only about every 7 years. I'm 2.5 years into this one, and right on schedule with that useage.

 

[Luana]

Gushing bloody story of that blog?? I think I need to read this. Where is it?

Pika,
I don't recall seeing that either.

The most important thing I've learned so far about all this is that taking warfarin means it takes longer for your blood to clot; it does not mean it will never clot.

 

[Shobu]

I received a pacemaker in 2004 after OHS in 2002; it doesn't pace 100% of the time, plus I barely notice it. I had a slightly larger one put in (Boston Insignia Plus, Model 1297) for longer battery life, plus I wanted one that you could scuba with to some degree. I have about 3-4 years left on it. I am pretty active with swimming and other forms of cardio and have a fairly active lifestyle in general, and the pacemaker has not been an issue in the slightest, other then the immediate period post-op.
Cosmetically, the pacemaker can stand out a bit under the skin, but unless my shirt is fitting tight or I'm at the pool/beach, no-one notices. A little smaller and it probably wouldn't stand out in the slightest (I'm guessing)
As with one of the previous posters, they had to do a lot of tweaking of settings with mine, especially being relatively young. There were some issues with "safety" settings as the tech called it that were fine for older patients but were inhibiting me getting the most out of the pacemaker. Took several checks to get it all worked out, but has been great since then (and it wasn't really bad in any significant way before)
I had scarring of my heart's own "pacemaker" sometime post-op after my first OHS, so it wasn't caught immediately, which is why there was a delay in having the first OHS and the pacemaker implant. I just felt so good post-op once things had healed, I didn't realize what the issue was till I tried really amping up my exercise levels. Luckily my cardiologist caught on before I fibbed out in the gym
Good luck!


--Dan

 

[mainframe]

I had a pacemaker installed about 3 weeks after my surgery. Seems I now pace about 98 percent of the time. One oddity with my install was Stanford put one of the wires outside the heart (according to my cardio) that requres alot more voltage than normal, which drains the battery alot faster. I expect to have to have another implanted early next year. My pacemaker was set to a maximum of 130 beats per minute which wasn't great for cardio, I've had them bump it up to 140 which is a least a bit more in the range I want to be in during cardio. I haven't had the chance to try out the new settings, a wound care nurse doesn't want me to do too much as a wound from a recent sternal wire removal heals.
The location of the pacemaker is still a bit tender at times 8 months later.

 

[pikacat]

hey dan, i think that's what they're worried about since there's already scar tissue there, that what happened to you might happen to me.

i'm glad it sounds like there's no limitations really, including even scuba diving! we didn't really discuss any models or anything, but i hope if it came to that, they'd make the right decision based on my lifestyle.

thanks for all the great info, everyone. it's given me a lot to go on!

 

[catwoman]

Pikacat:
I don't remember seeing anything about a "gushing" nosebleed. I **have** had nosebleeds, not gushing ones, if I let myself get dehydrated -- the nasal passages dry up and are prone to bleeding then.

The first ACT nurse I went to -- at The Heart Place at Baylor Hospital near downtown Dallas -- was great. She told me to keep my regular lifestyle & diet, just not to make sudden, drastic swings, for example, pig out on nothing but spinach for several days in a row, then eat no green stuff. That's the gist of what she said, not the exact wording.
You may lose your taste buds post-op for a few days -- even weeks. If this happens, make every attempt to eat. Your INR will drop as your activity level and appetite return to normal. Your ACT manager will make dosage adjustments to account for this.

Do NOT purchase a "Coumadin cookbook" or start perusing lists of vitamin K content in foods. They're pretty much worthless. Just eat what you like and be fairly consistent in what you eat. A well-balanced, healthful diet is just that -- fairly consistent in all types of foods. It appears that you already do that, so you'll be OK.

 

[Philip B]

Adjustments

Adjustments

I can't speak to the pacemaker issue as I don't have one of those, but I've had a few of years experience with coumadin. Perspectives vary regrading adjustment to coumadin. I had lots of questions fairly early on, but my adjustment was pretty quick. It quickly became a routine kind of thing and has proved to be a nonissue for me. I dose and home test to monitor.

Yes, I've had some nose bleeds that lasted for hours. I've even had to resort to a trip or two to the ER to get my nose packed. I've learned how to do that myself. Living in dry climates is probably the culprit. Nose bleeds aren't a common occurance for me, but I do get some.

Other kinds of bleeds haven't presented major issues either. I'm pretty active and my pursuit of activities often results in cuts, scrapes, and bruises. The only difference in bleeding while on coumadin and off coumadin is the length of time I bleed. I do bleed a little longer now. Despite some pretty major bicycle crashes, I've never bled very long.

-Philip

 

[Tam]

I'm now only one week post AVR surgery with Coumadin (or Warfarin as I know it). The first week is not really enough for me to make any informed comment on the effect it's having on my life - not that it worries me very much at all I have to say.
What I can say is that I've had a pacemaker since July 2008 (2 years) and it all that time I've never even been aware that it's there at all. The wound at the incision site healed very rapidly and is now barely noticeable. I hope this reassures you - it's no big deal at all, even should it prove necessary. Good luck to you.

 

[geckley]

I had my pacer installed 10 days post op of my Mitral replacement. The part that screwed me up was what caused me to get it. Standing in the middle of my room and the alarms went off and my monitor showed a weird straight line. Now it's pretty much like having a built in Metronome with my valve clicking every second on the second. My wife loves it cos it lulls her to sleep.