WAITING FOR PACEMAKER
This week has been so upsetting. After wearing an event monitor for 24 hours with only two events recorded, the cardiologist called and told me that I probably need a pacemaker. I saw my internist also this week and she tried to calm me down by letting me know what they found with the monitor. Originally the cardiologist thought my whole problem was my fibromyalgia. I am thankful he decided to order the monitor.
It looks like I have 2nd degree av block. I made an appointment with the cardiologist pacemaker specialist for Febuary 3rd. Both the specialists office and my internist said that if this was an emergency I would have been put in the hospital already. They said there is no problem waiting.
I am hoping the specialist will run more tests to make sure this is the definite diagnosis. I am just very scared with the unknown. Can you help me cope with the waiting.
6 Comments
Copying and waiting
by FirstDuely - 2010-01-15 10:01:02
I think I remember not feeling good for a week or so while my doctor did some tests, then we (my wife and I) ended up at Loma Linda Hospital one early morning and it was there I met the surgeon who ushered me in and I had a temporary implant in in about 20-30 minutes.
Coping with the time was for me just wishing to feel better. For you I see that this is not an emergency situation so I would hope you might try focusing on things that need to be done around the house or with the family or work. Try to treat this like maybe you need to get a tooth removed which for me is far, far worse than having a pacer implanted.
It sounds as if the doctors definitely don't think this is a bad heart problem and, as my doctor said long ago, there are far worse things to have happen to one's heart. My doctor once commented (and I remember this succinctly) that of all the things that can go wrong with a heart, having an electrical problem was the best. Now that may not make you feel appreciably better right now but down the road, as anyone here on this site will agree, you will look back and tell yourself that this whole pacer procedure was not as bad as we were first led to believe.....
Typically, doctors lay the cards on the table and really don't let you see all the cards in their hand. They can only go with what they've got as far as data. If they think they want more information then they will be calling and then you drive to the hospital or lab and you get nervous again and wait again for answers and it goes on and on sometimes.
What I guess I am trying to say in way too many words is that you can choose to worry about it now and carry your fear around with you all day for the next 2 plus weeks or you can attempt to push it into the background and go about your life as usual.
I've had 8 pacemakers over the past 23 years and as much as I'd like to convince myself and others that they get easier I still get nervous and I still worry but I have learned to cope with it in my own way and you can and will, too.
I also think that the worst part of going into the hospital is the blankity blank I.V.s So if that is the worst part for me then the rest of the pacemaker procedure becomes secondary and I just try to relax and take a nap...
I have a 100% AV block (SSS) and so I am paced all the time unless my heart decides to beat on its own.
Fact: Pacemaker technology is so far advanced over when I first got one that we really don't need to worry about them failing and there are so many ways to adjust them that they are really miraculous.
Last thought: If the lady internist says calm down, then do as the doctor says. If they aren't worried why should you? Keep smiling and trust the doctors. You will be okay.....repeat: I will be okay....repeat: I will be okay.....repeat: I will be okay (deep breath inserted here)....repeat: (get the picture?) ;) Now go about your business (Star Wars, Stormtrooper guard to Luke and Obe Wan)
THANKS
by MAXI1439 - 2010-01-15 10:01:41
Thank you Tracey. I actually have been diagnosed with fibromyalgia and chronic fatigue 10 years ago. Usually any symptoms that come up are associated with that.
For the last number of months since I received my first flu shot I have been lightheaded, dizzy at times and just feeling all over weird like I was getting sick.
Every time I went back to the doctor I was treated for different things. Once a clogged ear (dizzy) right, then sinus infection, feeling sick - then sore throat. But each time I pushed the issue of the odd feeling I was having. Last time they suggested Cardiac checkup.
I am also hoping if this is what is the diagnosis that maybe this will be the first time in 10 years that I can have pain from fibro but without the chronic fatigue. I may possibly have had this condition for all these years.
I guess I am also scared about being in the hospital and keep thinking about the worst that can happen. Guess that is just human nature taking its course.
Once again, thanks for the reassurance.
watching and waiting
by slarnerd - 2010-01-16 01:01:10
My daughter who just turned 5 has 2nd degree heart block. She got a pacemaker last summer after she fainted. Before that, we were watching and waiting, as you are. She went to the cardiologist once a year, then once every 3 months when her heart rate started to get lower at night (as seen on the holter monitor). Before she fainted, she had no symptoms. This fainting episode was 6 months after she first showed a lower heart rate. Even then, from the day she fainted to the day she was paced was 5 days. It was no emergency, even then. She maybe would have been fine without the pacer but we didn't dare chance it. The cardiologist/EP called it "precautionary." Now, she is more reliant on it, so it was surely the right decision. My point is - they know what they are doing, it is normal with this condition not to rush to pace if not indicated and combined with many factors (heart rate, pauses, missed beats, symptoms, etc), no sane doctor would let you walk around if they thought there was any chance you would have a problem. As a mom, I know how stressful this watch and wait game can be - I wish you strength and comfort!
2nd degree heart block
by golden_snitch - 2010-01-16 04:01:12
Hey there,
I'm with Tracey: 2nd degree heart block is not always an indication for a pacer. This degree will hardly make you pass out, that rather happens with complete, third degree heart block. However, it can bother you a lot and make you feel bad. I had an upgrade to a dual-lead pacemaker because I developed 2nd degree heart block (before "only" had no working sinus node), but I only had this upgrade because I needed to be put on antiarrhythmic meds for other arrhythmia, and those made the heart block worse. Now, I'm paced around 2% in the ventricles.
If you go for a pacer for 2nd degree heart block, make sure you get a pacer with a good algoritm to prevent "unnecessary right ventricular pacing". This is very important because with this degree of heart block, you don't need permanent right ventricular pacing, you only need it occasionally. But some pacers still pace you more than actually needed because the algoritm is either not that good or no well programmed. There is a study that shows that Medtronic's MVP algoritm (in the "Adapta" pacer) and Sorin's SafeR algoritm are superior to others.
Best wishes
Inga
symptoms
by Tracey_E - 2010-01-16 07:01:07
Do you have any idea if the dizziness happened at the same time as the incidents of block? It may or may not be related. 2nd degree means you go into block sometimes. I have 3rd degree which means all the time so my hr never went up and down with exertion before I got the pm, that's why I felt such a drastic difference.
Have you researched side effects of the flu shot? There are quite a few and they tend to downplay them when they tell us we need to get one.
Don't worry about the worst that can happen. If you end up with a pm, the most you'd be in the hospital (assuming everything goes smoothly) would be overnight. Most people are awake for it and it generally takes less than an hour. It's not something any of us would choose, but in the grand scheme of things it could be a whole lot worse. I've always considered myself fortunate to have something so easily fixed.
You know you're wired when...
You play MP3 files on your pacer.
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You'll come to peace with it in time.
2nd degree block
by Tracey_E - 2010-01-15 09:01:34
First of all, they are absolutely correct that if this was an emergency, you would be in the hospital right now. Mine was done as an emergency, the St Judes rep was at the hospital waiting for me when I got there, and my doctor called twice to make sure I was on my way (they busted me stopping off at home for a toothbrush and book, oops!). They don't mess around if it is remotely possible it's life and death. You have time to talk to another doctor or get another opinion.
2nd degree block is pretty obvious on an event recorder so I doubt they misread it or that more tests will tell you anything different. The good news is it's not always necessary to treat it, sometimes they can just keep an ey eon it. Are you symptomatic?
Next, pacemakers are not the end of the world. It's minor surgery with a fairly fast recovery. I have a third degree block that I was born with. It is the absolute easiest thing to fix with a pm. We simply have a broken circuit that the pacemaker corrects, our hearts are still setting the pace and doing the beating. Did they explain to you what the block is and how the pm helps it? I won't go into a long explanation if they already told you but some doctors spit out scary sounding words with no explanations.
After I got my first pm, I felt a huge difference in my energy immediately. Dizziness and chronic fatigue went away overnight and I had more stamina than I'd ever had before.
Talk to us and ask all your questions! There are a lot of us out here who have been there. I know it sounds scary but it's truly not that bad. I got my first one at 27. I'm 43 now and live a full, active life.