Carolyn65

After my cardiologist recommended a PM a couple of months ago, I found this PM Club, read many postings, then joined PM Club to learn more from other members. You, who have responded to my few postings have been really helpful. I NEED YOUR HELP AGAIN & MORE ASAP ~ I called for an appt. w/my cardiologist for THIS Thurs. a. m., 9/17 for our FINAL "chat" before I go ahead w/PM placement OR not. He had left it up to me at our last visit to call him for the PM OR come for my regular visit in December. I do not really have any of the symptoms he asked, "shortness of breath/dizzy/passing out/tired/weak/etc. My legs below my knees give out if I walk on cement type floors after a few minutes, which makes me feel tired in my legs. The Dr. had explained my A-Fib before as my heart being a 2 story house, with a very crowded stair case of people trying to go up and down (like blood flow), causing the blood not to flow right. He mentioned something about blood pooling & not flowing right. I guess that would be a "slow" beat? The Dr. has never mentioned "bray-------" that I keep seeing in these postings, but I am guessing that is what he tried to explain to me. I tend to "tune out" when I do not want to hear ~ that is why I have requested this appt. to "chat/talk" with him re: PM. I am taking along a friend to "help" listen. I have been taking BP/cholesterol meds for years and am in good control for about a year. The cardio. put me on Warfarin (coumadin) in March '09 (5 mg.) after having a blood clot in my right lower leg.. The Dr. put me on Flecanide in March '08 for a year which did not help the A-Fib before he took me off that. On two occasions he has used the "paddles" to shock my heart A-fib ~ na-da. After reading a lot of these postings by the PM Club members, so many have other problems included. I read the postings of PM Club members where the PM moves around, people feel the PM wires doing something, infections, the years people who have a PM placement who suffer for years, rates are not right/have not been right, etc. This Dr. appt. with my cardiologist which I have called for (will still cost ME/ins) is to answer some of these horrifying situations, what will he do IF anything like these should happen to me, etc. and on and on and on ~ I AM THE worrier of ALL ~ The Dr. even tells me that on other visits ~ LOL ~ ~ THNX again ~ ~ Hope to hear ASAP from you ~ ~

10 Comments

decisions

by countryriders2 - 2009-09-14 10:09:25

Hi Carolyn65 welcome to the club. Everyone is so supportive and caring here. I was sick for a long time without even knowing it. I was tired all the time and i would nodd off at moments notice. I got my pacemaker August 21st and i'm getting more and more energy every day. I ask myself now why did i wait so long. I still have problems with the PM but i get a lot of help here and at my doctors God has really helped me with my decision. i sincerely wish you the best and hope you make the decision that bests suites you.
Love, Diane

Do I or Don't I

by SMITTY - 2009-09-14 11:09:55

Hi Caroyln,

I'll make just a few comments for your consideration.

You list quite a few symptoms that you do not have which most people have one or more of if they are getting a pacemaker,

I seriously doubt that a pacemaker will cure your tired leg problem since you don't give any symptom for the pacemaker to help which leads ME to think the tired leg problem may not be a heart related problem that a pacemaker could cure.

Get your doctor to stop trying to straddle the fence and tell you yes you need a pacemaker or no you do not need one, at least not now, or go for another opinion and see if they will give you a yes or no answer. I think trying to make the patient make such decision is doing the patient a great disservice. There is no way you (or I) can know all the things a doctor must take into consideration before saying a patient does or does not need a pacemaker.

If you get a pacemaker for A-fib that is bad enough to cause the doctor to use the paddles on you, I understand there is now a pacemaker on the market that can do this very thing. You might want to ask the doctor if such pacemaker is available and if so does he think you would benefit from one.

Don't think too much about all the bad things that happened to the people that post message here. The last count I saw is the PM Club had slightly more than 9,000 members. There are several million pacemakers in service, so expecting the worst for your self based on the relatively few problems posted here I think makes you worry unnecessarily.

I wish you the best,

Smitty

How much "research" do you want to do?

by ted - 2009-09-15 01:09:17

Smitty and Electric Frank are very knowledgable. You say that your cardiologist recommended a PM several months ago but you are still getting opinions from anyone you can. It sounds to me as if you are really terrified about getting a PM and are looking for people who will tell you that you don't need one. It's OK to be scared and frightned, but sooner or later we have to make a decision. I hope that you make yours based on informed, reliable medical advice and not fear based or on what you would like to hear. The Web is no substitute for advise from professionals who have examined the patient and/or her medical records. Good luck

to pace or not to pace...

by golden_snitch - 2009-09-15 01:09:40

Hi Carolyn!

I think I posted that before:

Let your cardio give you a detailed explanation for why he thinks a pacer would help you. At the moment it seems that no one here really understands why you should get one. If your Afib causes bradycardia that would be a reason, also if your cardio wants to "ablate (your av-node) & pace", but if you don't know the reason then keep asking him until he explains it in a way that you can understand. Most newer pacers feature algoritms that should help to reduce Afib. For example a PAC/PVC suppression as Afib episodes sometimes are induced by a PAC or PVC. However, my cardios say that these algoritms are really not such a big help.

I have had lots of pacer-related problems, however, I'm still doing much better than without it and that's what counts for me. When I got my first pacer I was in bradycardia and also had pauses at night, and so it was perfectly clear that I would benefit from a pacer. If it hadn't been that clear, I might not have agreed to get one - at least not before getting a second opinion etc.
The indication should be clear and understandable for you. If it isn't, keep asking.

Best wishes,
Inga

Weak legs

by Blueaustralia - 2009-09-15 03:09:55

I had no idea I was suffering from bradycardia but I dreaded the walk from the bedroom to the refrigerator each morning to get the milk to make a cup of tea.

I would feel my legs go weak under me. Later, after my pm implant my cardio asked me how I felt and I remember saying that it was "good to have legs again." He found it very puzzling until I explained it to him. I never did pass out but would get very weak in the legs when walking up a slight rise in the footpath.

My heatrate was in the low 30's. I guess we are all different. And wish you all the best with your decision.

Cheers Blue

I agree with Smitty

by ElectricFrank - 2009-09-15 12:09:09

My first thought when I read your list of symptoms that you don't have was that a pacemaker is likely to be a disappointment. The afib causing a blood clot is always a possibility, but since the clots originate in the heart they generally lodge in the lungs or brain. Leg clots usually originate in the legs from lack of activity.

Your description of your leg problem could be peripheral neuropathy. It is a degeneration of the nerve sheath and causes numbness and weakness in the lower legs and feet. I discovered it in myself about a year ago. In my case I thought it was a return of an old back problem that I had surgery for in the 1980's. I had a neurosurgeon take a look at the situation and he diagnosed it as neuropathy. I'm 79 and he said it was fairly common as we age. He didn't have much encouraging to say about treating it.

So I did some investigation on the internet and found one of the most common causes was vitamin B12 deficiency. The Mayo Clinic has some information on it as well as the Royal Medical Society of Great Britain. It seems that somewhere around 60 yrs we stop making an enzyme that is required to convert oral B12 to an absorbable form. I started taking B12 injections and the symptoms have greatly improved.

It isn't a magic solution and only helps if B12 is the problem.

best of luck,

frank

One more thought

by ElectricFrank - 2009-09-15 12:09:58

I just re-read your information again and realized I had missed something. You mention you have been on cholesterol meds for years. These are well known to cause muscle weakness. Has the doc ran liver function tests on you? My brother who was involved in amateur competition skating developed weakness in his ankles and legs. I warned him about the statins for cholesterol he was taking. His doc wasn't particularly concerned, but agreed to run the liver test. Turns out that he was getting into a real serious situation. It took him a year to get back his strength.

frank

Best wishes

by ElectricFrank - 2009-09-18 08:09:58

I'll bet it is a relief to have the decision out of the way. Not only that, but having it done in a hospital with top rating.

frank

Carolyn65

by Carolyn65 - 2009-09-18 12:09:13

THANKS to ALL who have helped me make this decision ~ ~ my cardiologist has scheduled my PM for Friday, October 2 @ 2:00 p.m. Central Standard Time ~ I had an ECHO done today @ his office. Stop Warfarin (Coumadin) 3 days before PM placement. This hospital is THE Heart Hospital of Austin, TEXAS which just was awarded one of the biggest awards for being THE best heart hospital in the USA ~ can't remember what is was ~ just read it in local paper/online. He thinks a single PM w/ablate - - - - . It is tra-----. Will know more in the next 2 wks. Again, THANX to ALL who have been so helpful with ALL comments ~ most of you sound like a DR. with such good, sound advice. Now I guess I need to know the in/outs of making this a "good" thing post PM (recovering/washing hair & showering, ETC.)

Fear of getting a pacemaker

by ElectricFrank - 2009-09-18 12:09:57

I should have mentioned before that getting the pacemaker is no big deal if you need it. It's a short procedure having it implanted and you have options from being completely out during the surgery to staying completely awake. Keep in mind that many of the nightmare stories you read here are from folks that have very serious cardiac problems and likely wouldn't be around without the pacer. A few others are due to incompetent doctors practicing outside their expertise.

frank

You know you're wired when...

Intel inside is your motto.

Member Quotes

The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.