I'm 22 and getting a pacemaker
I am 22 yrs old and during a recent ER visit for what I thought was appendicitis, I found out I have 3rd degree/complete/AV heart block. Drs have no idea what caused it, but they have narrowed it down to its not Lyme Disease and its not Congenital.
I started off not having symptoms, and now I have mini "episodes" of dizziness and shakiness and severe episodes of trouble breathing, shaking, dizziness, and chest pain that ends up turning into a panic attack.
The Dr's are telling me that at this point I NEED a pacemaker, and they've told me all about what it does and why I need it and how much better I will feel after, but I'd like to hear from people who actually have a pacemaker.
Any input you have would be wonderful!
9 Comments
12 year old son
by rkuba - 2009-01-15 02:01:04
Hi,
I just saw your posting and wanted to let you know that I am the mom of a 12 year old boy who went in the hospital for what I thought was an asthma attack. Anyway he had Heart block as well. No known cause and not congenital He feels better than ever since his pacemaker. He doesn't even need his inhalers any more. His surgery was October 30, 2008. As a child it is amazing because they don't have the fear and worry we have. He just tells people he had a heart problem and the Dr.'s fixed it. His biggest problem is not doing things yet. Like basketball. He feels great so doesn't think he should have limits, as far as he is concerned he is fixed. All the best to you next week.
been there, done that!
by Tracey_E - 2009-01-15 09:01:14
I also have a complete heart block, mine is congenital. I knew in my teens that I'd eventually need a pacemaker. I put it off, procrastinated until I ended up in emergency surgery one day at age 27. I didn't realize until later that my hr had dropped so low that I was in danger of cardiac arrest. My symptoms gradually got worse, I had no idea how bad it had gotten until I felt better again. I felt energized from the time I woke up in recovery and I started taking walks as soon as I was released. No more dizziness, more stamina than I'd ever had before.
I'm 42 now and on my 4th pm. I married and had two kids. I hike, ski, work out, rollerblade, own a business and am active with my kids. Most people who know me have no clue that chunk of titanium helps my heart beat.
Being young and otherwise healthy, we generally bounce back pretty quickly. The surgery is short but they usually keep you overnight so they can take an xray of the leads at 24 hrs and make sure they're still in place. You'll need to keep your arm below shoulder level for 6 weeks until the leads are grown into place. After that, just about anything goes! We can't have an mri and it takes a bit longer to get through the airport. We can't arc weld or work in junk yards with those big magnets. I get checked every 3 months, tho that varies from doctor to doctor. Batteries last 5-7 yrs on average. It's really a very minor inconvenience, and in my opinion a small price to pay for an active life.
As you read the other posts here, keep in mind that most of the complications you read about are the exception, not the rule. For every one person with a problem/question who comes looking here, there are hundreds out there who never had any complications (and no reason to come here).
Did they explain to you what a heart block is and how the pm works? This is the easiest problem to fix with a pm because it's just an electrical short circuit. The pm completes the circuit. Our hearts are still doing the beating and our sinus nodes are still controlling our heart rate. The pm just sits back and watches for the ventricle to miss a beat (when the signal from the sinus node is blocked), when that happens it generates an impulse to make the beat.
If you have any questions at all about the surgery or living with a pacemaker, please don't be shy! I've always been the youngest in my cardiologist's office. I love it here because I'm not the baby :o)
I can't tell if you're a male or female. If female, I will give you some info on placement to discuss with your surgeon.
I love this site already!
by HB23 - 2009-01-15 09:01:42
Some of the people in my life don't know what to say b/c for me this really is a big decision. The Drs have told me all the downsides to the fact that I am young and my life expectancy is longer than the "average" person who gets a pacemaker. They've told me I have to worry about heart failure at an early age b/c of how the pm causes the beating rhythm to change, and also about how the wires don't last forever and I may need to have them changed at somepoint. Then they throw in that having the wires replaced adds a few more risks, such as restricting movement of the heart b/c of there being so many wires attached to my heart, b/c taking them out and putting new ones in introduces the risk of taking out a piece of the heart with the wire. ANYWAY...I've had a lot to think about since I was diagnosed in December. I am a female, and I am a little concerned about placement. It seems a petty thing to be concerned about but lets face it...as a 22 yr old girl there are some obvious reasons why I'm hesitant. Thank you everyone for your continued help!
oh brother
by Tracey_E - 2009-01-15 10:01:02
What are they doing worrying you like that?!?! It's nice when doctors explain things but not good when they go on and on about things that are fairly rare and scare you. I'm still on my first set of leads. My ejection fraction is still the same as it's always been. My pm is buried behind the breast, I don't have any visible lumps or scars. I need to get to work but I will address the other things they said when I get back, k?
I feel your concern
by maryanne - 2009-01-15 10:01:53
Lots of similar stories have been shared here.
I was 23 when I was told I needed a pacemaker. Like TracyE I most probably needed a pacemaker much earlier but did't understand that what I was feeling was not normal and I didn't think to mention it to my parents. It wasn't until my brother had a cardiac arrest at 26 and my sister at the age of 35 ended up with a pacemaker that I thought I should have it investigated.
I did and I had one implanted with in the month. I understand your anxiety about having a PM at such a young age and beiing female and the scar factor and all. I worried as well.
There is life post PM.....I went through 3 pregnancies without any complications what so ever. I have led a very active life...running,swimming, weight lifting,sky diving,water skiing, rock climbing...yup I love to be active...and for that I am thankful for my PM
Long term. I have had a PM for 24 years now. The doctors would be correct when they tell you that you will need PM change over the course of your life. Most PM's now days have a "life expectancy" of about 12 years, but with that being said it depends on how often it is used...for example someone who is 100% paced my need their PM replaced more frequently than someone who is only let say 50-70% paced. I for example am on my 5th PM. I need it and my PM's tend to last me about 7 years. There are many variables that can determine the life of the PM(generator/battery)...not only it's use but it's settings can affect how long the PM lasts.
The doctors would also be correct about the wires also known as Leads. I just went through a Lead extraction and PM replacement in December. Leads generally r don't get changed unless they are fractured, if there is an infection or a manuafacturers recall. My brother who has had his PM for almost 30 years has never required a lead extraction....but he has needed lead replacements.
There is a lot to absorb. But take it one step at a time. What you need to decide for yourself is what do you want for your quality of life. Personally I would choose to be verticle and get on with my life. You sound like you are symptomatic and would truly benefit from a PM.
I shared my story just so you know there is life after a PM.
There is a lot of resources out there to get additional information like the Canadian Heart and Stroke Foundation and the American Heart and Stroke.
All the very best....keep us posted....good health to you
cheers, Mary Anne
downsides
by Tracey_E - 2009-01-16 10:01:18
I'm sorry that they stressed all the downsides for you! It's important to be aware of the downsides but try to focus on the benefits- improved circulation so you're not dizzy and your organs aren't starved for oxygen.
Placement... it's not being vain to think about it! Most surgeons don't worry much about aesthetics but let them know it's important to you and discuss placement options with them. My incision is not on my upper chest, it's on my side about where the underwire of my bra hits. It only shows if I wear a halter or string bikini (sooo not happenin, lol). The pm itself is buried behind the breast. I don't understand why it's so rare doing it this way, probably because most doctors can go an entire career and not see more than two or three young pm patients. It's a little more complicated burying it there and recovery is a bit longer, but I am very glad I did it this way. If you choose not to bury it as deep as I did, they can still do it lower and more to the side. Not quite as invisible but still doesn't show with most tops.
Lifespan... Don't worry about the life span of the average person getting a pacemaker. You are you, not a statistic! The average person getting one is fifty or sixty years older than you and has other health issues so talking about average lifespan is irrelevant.
Heart failure/rhythm changes... Yeah, it's a risk, but it's not something I lose sleep over. They're talking about the heart muscle starting to stiffen and not pump as well. There are several of us here with pm's for more than ten, fifteen, or in a few cases twenty years, who have not yet had a problem with this. Newer leads are placed differently than they used to be and less likely to be susceptible to this. Everyone risks their heart muscle getting less reactive as they age. I figure my heart is less likely to lose efficiency because I'm more aware of my heart and therefore much more careful about my diet than the average person. I make sure I'm not clogging or hardening those arteries with a diet full of fat and salt. Life is a risk, ya know? ;o) Minimize it where we can is the best we can do.
As for rhythm changes, in the case of CHB the pm is restoring your natural rhythm by completing a broken circuit, not competing with your own beat, so that's not an issue.
Leads... theoretically a lead can last forever but in reality they often don't. I'm still on my first set of leads, though I'm getting closer to needing the lower one replaced. It still works but drains my battery faster, my doctor has left it up to me when to replace it.
If it happens that you need new leads, they don't usually take the old ones out, they cap it off and put the new one in on top of it. They can put in two or three sets before they need to think about extraction. There are a few people here who have had successful extractions, some went easily while a few had complications. It's a fairly new procedure and has some risk. Odds are good that if the day comes where you've gone through enough leads that you'd need an extraction, they will have had years to perfect the procedure.
19
by livin4jesus0603 - 2011-10-24 12:10:42
I had my Pm implant done when I was 19. Ive never felt limited in anything I do. The worst part was the day or twoop acre surgery. But now its been a year and a half and I'm healthy and I live my life exactly how I used to before my heart would give up on me :p my scar is noticeable, but I don't let that bother me. It's part of who I am. When it comes to your health don't take risks, and you will feel so much better when your symptoms are treated.
You know you're wired when...
A thirty-day guarantee is not good enough.
Member Quotes
My pacemaker is intact and working great.
Possible cause
by bonneville - 2009-01-15 01:01:24
Although probably unlikely. This is the reply I gave to you over on my thread...
A few years back I was diagnosed with Wegener's Granulomatosis. I was put on a course of steroids to combat this and gradually as I improved my dosage was lowered. The rheumatologist believes that before the Wegeners was slowed/stopped it caused damage to my heart. Unfortunately the original rheumatologist that diagnosed the Wegeners didn't check if it had affected other areas in my body apart fom those I had problems with - my eyes and arm/leg joints.