Told I need a pacemaker

Good day to all...this is my first posting and is going to be tough as I am shedding tears as I write this because I cannot wrap my head around the fact that I am a 36 year old male, in great physical condition, extremely active and have just been told I need a pacemaker because my heart rate droped to 20 beats per minute at night( Holter showed some times of 3 seconds between beats).

What I just cant understand is that during the daytime and during phisical activity everything is completely normal, my echo is normal, the stress test is normal!! How can a doctor diagnose this based on a single 8 hour period when the rest of the day its fine. I understand that this is not normal but its not happening all the time!!?

You'll have to forgive since I think I'm just in denial about the whole thing....I had to meet with the Doctor who will be installing the pacemaker to discuss everything and I am scheduled to go in next wednesday(April 11th). What I didnt like was that I asked him an endless amount of questions about continuing my phisical activity(mostly martial arts)...He basically said to me (paraphrasing)

"I am in unchartered territory here since I normally put these in people 60-80 years old(although I put one in my cousin who is 28), and all I can tell you is no contact sports." You cannot take a direct hit".You are a small percentage of the population that will have these.

I just cant accept this answer..one day I can do what i want and the next I have to stop doing something I love.....

How do you cope with this??? I just cant wrap my head around this, how can I go into surgery for this without mentally grasping this....

I could go on for ever with questions and feelings so I will stop, and hope that I can get some feedback...

thanks you sincerely to whoever reads this and responds...






18 Comments

needing a pacemaker?

by CathrynB - 2007-04-06 01:04:48

Hi there. Hannah is right -- it's a shock for all of us when we're first told we need a pacemaker. I have some thoughts to offer but want to start by saying I'm not a doctor, not a nurse, don't work in the medical field -- so I'm only sharing my personal experience and thoughts and you obviously should consult your doctor and make an informed decisions with his/her advice.
I'm wondering whether your doctor is just a cardiologist, or is also an Electrophysiologist (sub-specialty of cardiology that focuses on electrical disorders of the heart)? I ask because if it were me, with your story, I would not get a PM implanted without consulting an electrophysiologist. I'm older than you are -- 50 -- but I've been a runner for 30 years and am also very fit. The first indication I had a problem was last November when I fainted twice in one day at work. I wore a holter monitor for 48 hours and my heart was pausing for 3-5 seconds a half dozen times each day. These pauses were sometimes accompanied by dizzy spells, sometimes not. However, all of my heart pauses were during awake daytime hours, none at night. My EP doc said if they were ONLY at night, he would not necessarily fit me with a pacemaker. Even though all of mine were daytime, he still wanted to do more testing. My treadmill stress test and ultrasound revealed no problems at all. He had me wear a King of Hearts monitor for a whole month, and only then after determining that I had multiple 5-second pauses associated with dizzy spells did he recommend a PM implant. Really, though, it depends on the DIAGNOSIS the EP gives you. If you have heart block your situation is very different from if you have bradycardia (my diagnosis) so you need to know and understand your diagnosis. Heart block can cause you to die with no warning -- sinus bradycardia does not work the same way. If you doctor has never fitted a young person with a PM, I question whether he/she has much experience fitting them because there are many, many young people with them. My doctor has done over 3000 PM implants and says many of his patients are young, and athletic. I was implanted with a PM 1-24-07 and am now back to running and doing all my normal pre-PM acticvities except for scuba diving, which the EP says I have to wait 6-12 months to determine whether I can do that again. My EP also says no more contact sports, but I think there are some people on this website who do them anyway, and use chest protectors or major padding to reduce the risks. But you should do your own research and follow your doc's advice on that.
I'm so sorry you've got this big worry to deal with, and we all understand what that's like. Keep in touch with us, take advantage of the enormous amount of caring and experience people on this site have, and please keep us posted with how things go for you.
Take care, Cathryn

Medicines

by Butch - 2007-04-06 02:04:02


You just found out all of this ? Some athletes who are in great physical condition have a very slow heart rate. Theres nothing wrong with it. Did your doctor try to put you on any meds to keep your heart rate up at night? Why did you go to the doctor to begin with? Were you having any problems?
There are alteratives to where they can put a PM. Some people get them in their chest , stomachs. shoulder. You might be able to put it some where where it wont be as likley to take a hit.
You might want to get a second opinion..

smitty response

by shock537 - 2007-04-06 02:04:04

Smitty,

First of all thanks for the response!!!! To answer your questions..

My resting heart rate has been around during resting stages 60-65.

I don't think I mentioned this but I was just told Wednesday by the cardiologist that i need this and saw the Pacer doc yesterday...apparently the Cardiologist already made the appointment for next Wednesday with out discussing it with me. So that to me made it seem extremely urgent..then i asked the Pacer doc what if i don't do this Wednesday?He said then you can wait until you have symptoms and take the risk of passing out on a hard floor, while driving or other critical situation...

I have one guy telling me do it next week and another saying wait if you feel like it but its risky....and if you see my post to Cathryn another cardiologist said your fine without testing....

I'm going for more opinions...looking into the top rated clinic in the US..

regards

Martin

needing...

by shock537 - 2007-04-06 02:04:08

Thank you Cathryn for your response...I just looked into what you had mentioned and the doctor I am seeing i thought was just a cardiologist...apparently the following are his specialties.....

Consultative & invasive cardiology, cardiac test, electrophysiology

The thing is that is killing me .... I was diagnosed in 1999 with first degree AV block did all the tests..holter,echo, stress with a different doctor..I recently went back to him because of high blood pressure and wanted to just make sure everything was ok with my heart since it had been so long since i had seen him..I had/have no symptoms of the thing progressing further...he basically said here is some meds for your blood pressure and we aren't going to "go on a wild goose chase" for something since I am young healthy etc..etc..All while he is telling me this he is ordering a coffee with splenda.....This guy works for a "prestigious" hospital here in new haven CT USA and i just couldn't believe how he was acting..

so needless to say I went for a second opinion and this is where I am today.This doctor is affiliated with the same hospital but has a completely different opinion....

The point of me saying all this is that i think I need more opinions from the right specialists..I admitted before that this is a shock and denial is active right now but I feel the need to seek several specialists opinions...if the answers all point in the same direction then I have no choice. I just cant see putting a life changing surgery into the hands of one mans opinion....

Sorry continuing on and on but each time i discuss this I start to become more aware of the reality of it...thank you so much for listening....

medications

by shock537 - 2007-04-06 03:04:03

Butch,

It all started when I was feeling fatigued the morning after intense workouts at night and my fiancee telling me my cheeks are so red all the time.....She started to monitor my blood pressure and it was "borderline" as they say with the average being 140/90. Some days I would work out and my blood pressure would be 161/96 and not come down for the whole day...So I went to my primary care doctor and she ordered the blood tests and the sleep apnea test since I have always been told that I stop breathing at night. Everything was normal for the blood tests but I do have a moderate form of sleep apnea.. I told her about my 1st degree av block that was dignosed in 1999...She said i'm not concerend with that its nothing to worry about but requested I see my cardiologist since its been so long...

As for the drugs for the heart rate, the cardiologist said drugs wont fix this...you need a pacemaker!!!

Blood Pressure

by Butch - 2007-04-06 04:04:07

A pacemaker paces your heart when it beats to slow. It's like the same thing I have and most of the people who are on this site have. When my heart rate drops, my BP goes down to 90/60 and even lower, then I get light headed and feel like I`m going to pass out. But your blood pressure being 161/96 and not going down is not right. Why do they say it is not going down after working out ?

EP studies

by lenora - 2007-04-06 04:04:44

Shock, sleep apnea and uncontrolled hypertension coupled with the bradycardia and pauses during sleep require intervention now. I would get a consult with an electrophysiologist for EP studies, which would show how electrical impulses are spread within the heart. Your primary was right; first degree block is benign and nothing to worry about. Sleep apnea and a heart rate in the 20's with 3 second pauses is a setup for disaster, however, without intervention. All of us here have been through what you're feeling right now and we understand it's hard to swallow the idea that your active life could be altered, but if you end up with a pacemaker you make your adjustments and go on living. You will be able to live a normal active life with a pacemaker. . Good luck. Lenora


blood pressure

by shock537 - 2007-04-06 05:04:27

Butch,

None of the doctors has heard me when I tell them about the blood pressure staying high after workouts. Al of the doctors use the regular "protocol"...high blood pressure, take some drugs to bring it down!!

They seem to focus on their specialty...sleep apnea or cardiology!!??

Pacemaker and martial arts

by tigger78 - 2007-04-06 06:04:41

Hello!

First of all: A second opinion is the best thing that you can do in this situation. Don't let anyone stop you from doing this!

I can imagine that the thought to stop with your beloved sport is really something painful.

However, I have had pacemakers since I can think (I am 28 yrs old) : I have a complete AV-block and no own pulse. But I have been doing martial arts for years (karate and capoeira).

One thing what your doctors says is true: contact sports is not the best, as the pacemaker might get hit and so get broken. In other words: to do fights with big physical contacts and martials arts in which you fall a lot (e.g. judo and aikido) are not the cleverest thing (one reason why I quit with karate).

I do not know which kind of martial arts you are doing, but I have made good experience with capoeira (though every cardiologist has almost killed me for this in the past years), as you are fighting but trying not to hurt the other (we call that "playing"). Maybe this is a sollution? (I wish that I would have better advice for you...)

The other thing is that you should not be afraid that the pacemaker decreases your fitness. I guess that it might happen even the opposite: I guess that because of the pacemaker you will be able to have a deeper and healthier sleep, you might wake up feeling more "refreshed" and so that it might even increase your condition. So don't be afraid of this topic !!! :-)

Take care!

Signe

hey brother

by randrews - 2007-04-06 10:04:45

Hi Shock,
A lot of what you described I felt 3 weeks ago and still do. I'm 47 and was training for my 1st marathon when I passed out while laying down and the doctors decided it was time for a pacemaker. It all happened in less than 48 hours and I didn't have much time to process it all. I'm doing it now. Physically it's been a challange because I've been pushing it. In less than 2 weeks I was doing 6 miles again (until the doctor told me to stop for a few weeks) That's been the easy part. Psychologically it's been real tough. But everyday is a step closer to getting better. I don't know much but this site has been a god send for me. The people here know a lot of the technicalities and definatly know the emotions we go through. Stay open, keep talking and call your best friends when you need to and talk to them.
Take care friend,
Rusty

Hi Shock

by MSPACER - 2007-04-06 11:04:52

I can recommend a good EP in New York City if you are willing to travel. It's about a two hour drive from New Haven? I trust his opinion. He will let you know if you really need a pacemaker, or if something else is going on. Let me know-I'll give you his name.

Millie

Hi

by herbie - 2007-04-06 12:04:09

I'm really sorry you're feeling so awful, but trust me - you're not alone!

I am 23 and recently had a pacemaker fitted for third degree heart block. The doctors think that I have had this since birth but it has only just been detected. Like you, my heart was stopping for a few seconds during the night.

Now, I could go into a long-winded explanation of what exactly my problem is but it probably isn't the same as yours so it probably won't help too much. What I will say though is that this news will have come as a hell of a shock to you, as it does to most of us, but it will get easier. The way I had to think of it was that, whilst I had managed to survive 23 years without a pacemaker, the fact that my heart was stopping during the night increased my chances of it never starting back up again. I had been lucky to survive the first 23 years of my life, I wasn't going to push my luck and risk not having one implanted as I quite fancy another 23 (although the hospital didn't give me a choice anyway!).

My cardiologist hadn't really experienced many young pacemaker patients either, so I have become something of a learning curve for him. However, there is no real difference in procedure whether you're 18 or 80, it's the setting of the device once it's fitted which may take some time to get just right.

As for stopping contact sports, I know this must be difficult for you as it's obviously something you love. However, for the moment, concentrate on what you have to do to get through this tough time, take your time to recover, then consider your chosen sport. It may be that you could still use the sport as a workout, just not in the competitive contact sense.

There will be many questions that you need answering, I know it's a scary time right now but please feel free to ask away. You can send me a message if you like, I'm not saying I will know the answer but I certainly know what it's like to have so many questions! There are loads of knowlegable members of this website who will be only too happy to help, so don't worry about asking anything.

Hannah

Hi!

by tcrabtree85 - 2007-04-07 01:04:07

I'm not going to recommend a thing to you because I think everyone else has but I will tell you that I will be praying for you. I am 21 years old and got my pacemaker 3 weeks ago. It sure was a struggle for me to face the fact that I had a heart condition when I was 18 I went to four heart doctors while living in IL and when I moved to Iowa I went to 5 more until I finally found the one that answered every question of mine.
I pray that you find peace as I pray that for everyone who has health problems. Coming to understand why things happen in our lives is hard and is sometimes a rollercoster that we never expected to adventure on... though once you hit the bottom you will see that you can face much more with a little help.
If you need somebody to talk to feel free to send me a message. The people that are on this site have helped me and the encouragement is amazing. Stay strong my brother!
Tammy

Shock

by Vai - 2007-04-07 01:04:59

It's tough when you have so little time to process and digest what's been told to you. Based on the spread of good advise offered and you're responses, it appears your best course is to seek a second or 3rd opinion (I sought 4 independent opinions). In your case, it looks like there is some divided opinion whether you really need a PM right now! Just consider the PM is there to protect you, as a form of a shield, it is not a cure. Without the PM, you run a risk (maybe minor now but can become major over time) leading to dizzy spells, fainting spells and eventually sudden blackouts. Blackouts even if for a brief few moments can have serious consequences depending on what you are doing at that time. As my EP advise me in my case, "you can elect to defer this for some time, it is not a matter of IF but a matter of WHEN" you need to do this.

As for martial arts (my love as well), you can continue the sport as physical exercise or individual performance sports. But as for contact (such as sparring and boxing), you have heard enough - you do so only at your own risk. It is a matter of wisdom. I gave up all forms of sparring once I had my PM implanted but instead took up Tai Chi which I now enjoy tremendously.

Good luck.


Wow

by pace1 - 2007-04-07 09:04:50

I left a reply to your second post and went back and read your initial post...wow, pretty similar situations, except for the martial arts! I'm very active as well, I'm a personal trainer, so fitness is a huge part of my life. My heart rate dropped to 27 3 times in 24 hours and once was in the late morning while I was out and about...they can't explain why I didn't feel dizzy or pass out. I apparently was born with it, but no one ever checked into it since I ran they thought oh, you're just fit. I've been concerned that my heart rate would be in the mid to upper 30's after sitting down for 5 minutes. I'm not a marathon runner by any means, so I didn't think this should be normal. Besides, Lance Armstrong's resting heart rate is 37 and I'm no where near a professional athlete's level! My echo was also fine and I never felt bad at all, ever! I was in complete denial so I got a second opinion and that dr. said he didn't think I needed to! He said I definitely had complete heart block, but since I had no symptoms, then wait. That just didn't sit well with me so I did A LOT of research and reading and talking with people who had similar situations and decided to do it. My dr. said I would notice my endurance increase so I was excited to run again, but unfortunately it is the same. A part of me wonders if I did the right thing and if it was worth it. I look at my two kids and know I did it because I didn't want to take a chance of passing out with them in the car or at home. Even though I know that, it's still hard to accept sometimes. This website has been a true blessing for me. Just give it time and do some soul searching...and take your time...the first dr. I talked to wanted to do it right away and acted like I was going to die tomorrow if I didn't do it. The dr. who did my surgery was great in helping me think everything through and making me feel comfortable. Please keep me posted!

Needed one too!

by hooimom - 2007-04-07 10:04:32

Hey Shock,

It always amazes me to see how young many of the PM patients are. I am 42 and got mine in July. My cardiologist made it sound very rare that someone my age was dealing with a 2nd degree block and in need of a PM. He thought I needed one though. He had another doctor in the group see me and he said no. They decided to send me to the EP and she said absolutely yes, that it was the only thing to keep me safe. That was it--2 against 1. Go and get another opinion, this time an EP. This is one of the most confusing experiences you will ever go through because so many doctors don't give us the informatioin we need. I am so glad that you found this site before your decision. Most of us didn't get the support we needed until after our implants. Ask any question that comes into your head. Ask your doctor and ask the people on this site. That is the best thing you can do for yourself right now--get informed!

Michelle

hey shock

by jessie - 2007-04-07 12:04:19

you know i was in a terrible situation when i got this in august. my pulse was 28 and i was in great danger of going into cardiac arrest. i did not have time for a second opinion but feel that they knew what they were doing and i can now be here and live my life. it was a matter of not maybe being here at all so am grateful. all the best in your decision but i don't know if you have time to wait around i did not jessie

be safe

by stephanieann - 2007-04-08 02:04:21

a pacemaker is not a bad thing think about the alternative. my heart would even stop in my sleep along with the fatigue and fainting episodes it was the sleep part that scared me. thats when my pulse would go the lowest about 30. your being deprived of oxygen the slower your heart rate gets and the longer it lasts. ive felt great since the instalation and you cant even tell its there. i still ride horses go to the gym and anything else i want im back to a completely normal life

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