What should I do?

Hi everyone,
I am a newby and have just joined the pacemaker club. I am 37 and I have had heart problems all of my life. My doctor has suggested a pacemaker but that it is my decision. He is 50/50 about it and I am really confused. The procedure is scheduled for next week and I am feeling very anxious about this. Any advice would be really helpful. The reason he has suggested it is he thinks I may have bradycardia as I have had a lot done to my heart (5 heart procedures) and my heart rate and blood pressure is often very low.I am also often dizzy most of the time and find it hard to concentrate. I like to keep active and exercise but my doctor said if I am not careful that the wires can snap.
Reading through some of peoples comments, the opinions seem varied. I have a few questions and would really appreciate anyones help:
1) Have you found that it increases your energy levels?
2)Does it increase blood pressure?
3)Has it impacted your ability to do sports in a positive or negative way?
4)Can you still so upper body weights?
5) If you are quite small in size, does it really stand out?
6) Is the scar very big?
7) Is it very painful?
Thank you so much for your help in advance.
Best wishes!

9 Comments

Advice to the PM lorn

by donr - 2012-12-13 09:12:07

Tanya: I'm kinda wondering - why is the Dr. only 50/50 about it? Why can he/she not say "You have Brady."? Either you have it or not. Either you have hypotension or you don't.

You do not say why you have had 5 "Heart Procedures." For what reasons? Electrical? Mechanical? Bypass? New valves? They do not necessarily lead to PM's.

If the waffling by the Dr. is the situation, I don't blame you for anxiety about the procedure.

I'll address the last issue first, because it really frosts me. "You might snap the wires." That is the biggest pile of kangaroo excreta I've ever seen. PROPERLY implanted, The probability of snapping the leads is far less than the probability of being struck by a Rolls Royce while standing in the middle of a roadless track in the outback.

Yes, wires fail. I had one fail at the 4 yr point - completely snapped in two. Reason never determined. There are failures for many members of this club. But - there are millions of PM's planted every year & the no. of lead failures is miniscule, compared to the numbers of them in existence. Properly implanted, there is enough slack in them to keep you from ever doing anything that could cause a failure.

Now, that being said, you must obey the movement restrictions for the first 6 weeks or so post op to ensure that all heals well. The leads are most likely very firmly embedded & healed over in a matter of days. The extra time is for insurance. I took a Jeep Cherokee (Sorta like a Land Rover) in the right shoulder at 35 mph a mere 9 weeks post op. Broke a whole bunch of ribs, collapsed a lung, gave me a small aortic aneurysm & some fluid around my heart - but the PM & its leads were absolutely untouched or affected! MY cardio was quite concerned about me - for two reasons. 1) The PM & its leads. 2) A concern that the violence of the impact could have torn my heart loose from its moorings. Well, I suffered a bit of #2, but NONE of #1.

Read about exercise in here & you will find that you can do darned near anything you want. I'd suggest, however, that you not take up Rugby, Australian football (Whatever that is), Thai kick boxing, Sumo Wrestling, Greco-Roman wrestling, Operating a pneumatic Jackhammer breaking up concrete for a road project, or firing a 12 gage shotgun w/ the stock resting on the shoulder where your PM goes.

The best advice I got from my cardio was that I should not try to become a Bulgarian weight lifting champion. (That is not a joke - he actually told me that.)

Lessee, now - I called the Medtronics gang when I went to Hawaii & my daughter wanted to take us all swimming in the open ocean to see dolphins. I asked if the PM generated enough of an electric field to attract pelagic sharks - like Great Whites. They said they did not know. No one had ever performed such a study. Did I want to be the first test subject? I declined the honor. So, unless you want to be the first test subject - watch the waters around Australia. I understand you have a lot of Great Whites out there - except off the north coast, where they have all been eaten by your variety of ocean going crocs.

We have lots of weight lifters, runners, cyclists, hikers, swimmers, backpackers, mountain climbers, etc. Just be reasonable. AND...wait a while before starting it.

Now to the rest of your questions - in order.

1) If you are truly suffering Brady - it will increase your energy levels.

2) Does not affect BP, in general.

3) See above discussion for effect on sports activity.

4) Sure - just remember the advice about trying out for the Bulgarian Olympic Weightlifting team.

5) What do you mean by small? Sub-cutaneous or sub muscular implant?

6) My scar is about 3 inches long & only shows if you stare at it.

7) Pain level depends on who you are & how you react. In general, not much to get excited about. Just uncomfortable. FOR MOST PEOPLE. There are exceptions to every rule. Look at it this way - you will be losing a knife fight w/ a person armed w/ a very sharp instrument. Now, wouldn't you expect such an event to cause some pain - at least for a little while? I took a grand total of 3 pain killers post-op. Others take them for days to weeks. You have asked a "How long is a piece of string?" question.

Wish you the best, whatever you choose to do.

Don

Go for it!

by bowlrbob - 2012-12-13 09:12:16

What have you got to lose by trying. Here is my answer to your questions. 1.Yes it increases your energy levels. ( at least it did mine.)
2.It definately increases blood pressure,
3. I was able to resume all the sports I play.
4.Yes no problem and I went back to a very weight related physical job.
5. No, it is not that bad. I am small and most people don't even notice.
6.about 1 and 1/2 inchs and after a year or so almost not noticible.
7.It was not at all bad for me. A day or two and after that tylenol.
I have not had a dizzy spell for the 7 years I have had my pacer.
Your Dr. is being very cautious. My Dr. said do what you want without worry. I have for 7 years and the wires are just fine. I don't believe they will just snap. I install carpet and vinyl. I lift. I play golf. I bowl a lot. No problems at all. If you are feeling crappy now then do it , you have nothing to lose and everything to gain. PS, it takes about a month or so before you can do lifting to allow the leads to set. Then you are good as new. My tech said after scar tissue is formed around the leads at the heart. It would take a back hoe to pull them out. I belive him as I have done many things that have tested this theory out. I have had no problems at all. JUST DO IT.

I agree with Don

by Grateful Heart - 2012-12-13 10:12:17

I don't like the 50/50 odds. Why does your doctor not know for sure if you have brady. I would seek a 2nd opinion just to be sure and ease my mind. In fact, I did seek a 2nd opinion when I was told I needed an ICD. 2nd opinion confirmed it and then I was more comfortable (as comfortable as could be) in agreeing to the ICD.

Yes, I have felt so much better after the implant.

Good luck in whatever you decide.

Grateful Heart

odds

by Tracey_E - 2012-12-13 11:12:12

Is the dr not sure it will help, not sure you need it, or not comfortable putting it in someone young? I'd get another opinion, but if I were to bet my money would be on the last. A lot of them simply have a problem with putting a pm in young patients, which is really stupid (just my opinion lol). If we feel bad, we feel bad, it doesn't make sense to me to put off fixing something because the fix is something typically only for older patients.

It's simple enough to see if you have brady, have you had a Holter?

If you know your rate is low (below 60) or doesn't go up with activity, and you have symptoms (sounds like you do) then a pm can only help.

1) HUGE energy level change for me. My resting rate was low 40's before
2) My bp was low before and after
3) POSITIVE! I was never able to do any sports before, now I do whatever I want
4) I was doing power snatches with barbells this morning :o) Drs are mixed on whether or not it's safe. My dr and rep both feel there's no reason not to do whatever I want. The pm is titanium, the leads are small and very flexible, the place where the leads attach to the pm has slack. Scar tissue grows around it so that if we need it removed it takes a special laser. How is playing sports going to damage it? I've been paced almost 20 yrs, have never held back, have never had a problem.
5) I am 5'6" and small boned. I was a very underweight 110lb when I got my first pm. They got a plastic surgeon to bury it under the breast. You can't see a lump. I can barely feel the edges of it.
6) I've seen big and small. Depends on your surgeon and your skin. The pm itself is only a little bigger than a silver dollar so if they are careful and have no complications, it can be very small. Make sure they know it's important to you. Or see if a plastic surgeon can assist.
7) See above. Dr's place it differently, we're built differently, we have different tolerances for pain. Burying it means a bit more discomfort and a bit longer to heal. I got by on Tylenol after the first few days, I didn't think it was that bad, more discomfort and inconvenience than true pain. But that's just me!
Whatever it ends up being, know that it doesn't last, you get through it, and hopefully you will come out feeling so good you forget all about it. If you've already had so many procedures, odds are this is nothing compared.

I just missed you Tracey!

by Tanyamaree - 2012-12-13 11:12:27

Hi Tracey,
Thank you very much for your response. I was busy writing mine when you wrote yours! Wow that was really helpful! You were spot on too, my doc is hesitant to put a pacemaker because I am young. I have had a holter (many in fact!)
My resting heart rate goes as low as 35 and often sits around the 40 mark. It does go up when I exercise but quickly drops right back down. I also find it had to exercise and find I run out of energy very quickly. Its exciting to hear you all exercise. I am hoping that it will help me train better if I have the pm put in. I am definitley going to ask him about putting it under my breast.
Thank you so much again, I feel much better about this!

Thank you and clarification

by Tanyamaree - 2012-12-13 11:12:58

Hi everyone,
Thank you so much for your responses. They have been really informative (I will think twice about getting into the ocean again to swim with the dolphins, I promise you that!) I am really sorry I should have re read my post before I sent it as I had made a typo. I have been diagnosed with bradycardia (not may) however he is still 50/50 about everything else. I should also explain a little more about my condition. I was born with a hole in my heart (a very big one) and they left it too long to operate and was done so at the age of 9 and it caused a lot of damage. It is called an ASD repair which then sometimes causes bradycardia which it has in me. The other procedures I had were complicated ablations over the space of 3 years when I was 32 as I had also developed Atrial Fibrillation, SVT as well as a few other arrhythmian conditions. My prof said that it is one of the most complicated he has dealt with (hence why I won't go into details-as I don't really understand them myself).
It looks as though you have all experieced a number of different things that have led you down the pacemaker path. I wasn't sure if those who have bradycardia experience the same symptoms or in a similar situation and thought if it had helped you feel better then it might also help me to. I realise now that it is a little more comlicated than that.
In relation to the size, my doc said that the one that is fitted will be a new titanium one that enables you to have MRI's. So it is a little bigger than most (I believe) I am 53 kgs and have never seen one in a younger person so I am not sure what to expect.
I had nightmares about the wires snapping last night, so tthank you for answering that one for me ;)
I am hoping that this will help with the symptoms I have been experiencing however am worried that I go ahead with this and it might not help me at all.
Is there anyone who has had and ASD repair, AF and/or SVT oand have had a pacemaker put in?
This is really great to be able to talk to people who have and are going through this rather than doctors, so thank you for your help all.
Wishing you all good health!

Decision made

by Tanyamaree - 2012-12-14 06:12:46

Don, Thank you for the time you have taken to respond. I agree with much of what you are saying and my decision on having a pacemaker is not influenced by the cosmetic side of things. However as someone who already has many scars across my chest due to other heart operations I have had (my first being at 9 years old) I am sure that majority of people on this site would understand that I would like to minimize my own scaring or implications where possible.
My previous post did not imply that my cardiologist pities me because I am young (nor do I for that matter) however I believe that he understands that as I am young, that I may still like to wear clothing that young females do and in some cases (but not all) may be a little more active than people of an older generation.
I am simply trying to be sure that I am making the right decision (given my cardiologist won't give a definitive response) and to try to have an understanding of what it is like for people in my age group who live with it.
Given everyone’s feedback and after speaking to a cardiologist I have since made the decision to go ahead with the pm.
Thank you for your help once again.

35?!

by Tracey_E - 2012-12-14 10:12:31

That is not even CLOSE to borderline!! No wonder you are dizzy. I'm glad you made your decision. I'm no dr and I know your case is more complicated than most, but it can only help you. No one can feel good when their hr is half what it should be. Good luck to you. Please let me know if you have questions or just want to chat.

What is too young?

by donr - 2012-12-14 12:12:27

Tanya: Try an 8 day old baby. Or a 5 hour old baby. Or girls & boys at every age between those & yours. There are tons of people in here who had them implanted at early ages. Did Tracey say she's had one for about 37 yrs?

There is just too much of that "Oh, you poor thing - you're sooooo young to have a PM!" If you have a problem w/ your heart, it should be taken care of. I knew a man who used to say "Bad news does not get better with age." Look what happened because they did not take care of your hole soon enough. It became a really major problem.

From what I read of other's experiences in this site, you have far more than enough justification for a PM.

Ok, so you're a petite little thing. The PM can be well hidden by a skillful surgeon.

Don

You know you're wired when...

Your device acts like a police scanner.

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Pacemakers are very reliable devices.