Still tring to wrap my head around all this...

Well to start this Id like to introduce myself. My name is Christen and im 28. I just received my PM 3-5-09. I went in for an ablastion to help my SVT.I had a 5% chance to end up with a PM. While burning my slow pathway they hit my pathway i need to survive. I woke up up a battery opperated heart... Needless to say im still bitter and angry over it all. Im so freaked out!! I have a 2y/o and a 8y/o. Im a single mom ,I work full time and go to school full time. What do I do now??? I run, swim, chace, skate, and play sports. I like to drink and dance and now im all scared to get my heart going. I can't help but be scared and wonder how am I going to do this.I know im probally over reacting but I need to vent. IM LIVING OFF A BATTERY!!!!!! I have 3rd degree av block. I am 100% dependent on a friggin machine in my chest. IM soooo scared. Im afraid that it will stop working or malfunction while im with my kids. Im scared to die.....I dont want to die for a very very long time.... Please can some of you please help me. ease some of my worries... like can I live on this for the next 50 or so years? Can I run a marathon? I truly for once in my life need advice that I cant answer myself... I look forward to hearing from you

Christen in St.Louis,MO

8 Comments

Read Franks message and take it to heart.

by bowlrbob - 2009-03-14 01:03:09

Christen, It was nice talking to you in chat. What Frank is saying is true. We had a nice chat and I hope it helped. I meant what I said if you need something please private message me or jessie or turboz24. After you sign on just click on the names anywhere in the post and the private message screen will come up. I might be a day or two but i will get back. I am sometimes out of town. If you need some really technical questions answered ask Electric Frank he will go to the ends of the earth to look up the answers for you. If you just want to be cheered up write me or jessie. We will give it our best shot. Bowlrbob

thanks bob

by jessie - 2009-03-14 02:03:22

i remember at first how very scared i was. it is just great bob that you are reassuring her. she is a very nice young lady and she needs our support. before long she will be fine and going strong as part of the group. so it is bad but not so bad really to be dependant on a device. at least we have something to save us. most don,t . that is why i consider myself one of the chosen few. so good to know you take care. jessie

BITTER AND ANGRY

by pete - 2009-03-14 03:03:32

Cristen I know how you feel, but you must remember that the overwhelming majority of doctors are only trying their best. All ablations carry a small risk of untoward damage. You were just unlucky. But you were lucky enough to have doctors skilled enough to save the situation for you. The EP doctors when "firing the laser" to burn out the pathways they are aiming at are shooting at a violently moving heart as its still beating. And the laser is also thrashing around a bit. They are doing this with guidance only from a 2 dimentional slightly fuzzy image. Its a very very skilled process. I am sure you will forgive them in time. Feeling of bitterness are really destructive, best to move on from them. You will probably still be able to do most things but I personally would not run a marathon as I consider that to be a risk even for perfect hearts. I know a perfectly heathy person who dropped dead after running too far. We all need to take care of ourselves. Although I am sure there are some marathon runners on this site. Good luck to them. Of course you "dont want to die" none of us do but it is our destiny. I dont think you should be thinking about your demise at your age you are very likely to live a normal life span. Have a happy life. Peter

I feel your pain

by janetinak - 2009-03-14 04:03:47

as I had an ablation & it was planned that I would end up 100% dependent. This was in 2000 as it was my only choice back then after living wih severe AFib for two yrs. Between the SOB, fatigue & generall feeling so lousy & having to take a lot of meds I was ready for anything & it worked for me. I can only imagine how I'd feel with what happened to you. But to answer your concerns: as mentioned above it is very rare to have the battery quit without warning. I kept thinking about the flashlight you pull out of the drawer during a power failure & it has quit due to a dead battery. I was reassured that would not happen. And 3 yrs after my 1st PM I needed a new PM due to some problem in me (probably put calcium on the tip of lead in my heart or something) whatever, I got slightly SOB but noyjing like it was befoer. Ran a test over the phone (PM checked for me every 3 months, in office check alternates with phone check) & I was due. Battery was running out of juice & conserving its energy so I could continued to be paced. IT DID NOT QUIT!! It just limited the amount of pacing ( did not increase heart rate, etc) so it could continue. I was told it could go on for another month at least. But we elected to get it replaced in a wk. That was in May 2003 & I still have 1.5 yrs left on this one. Replacement is not a big deal either. More on that later when your ready. I am older than you but I worked full time until a couple of years ago, have an active life with now swimmimg at least 30 minutes a day, etc. I agree that you may not be able to do a marathon at least at 1st but check some of the postings here & some folks worked up to that. You can do what you want. It just will take getting your PM adjusted at 1st to you & your lifestyle but I have no doubt you'll get there. Keep talking to us & let us help you thru this.

Janet

living off a battery

by Tracey_E - 2009-03-14 07:03:25

It takes some time to wrap your head around the whole thing, especially when it started so badly for you, but once you heal you should be able to do all those things again. Confidence will come with time. I've been 100% paced since I was 27. I'm 42 now, healthy and active and most people have no clue I have a chunk of titanium that keeps my heart beating. Pm's are incredible technology, much more dependable than our screwy hearts. Give yourself time to heal both physically and emotionally. If you have questions, please don't be shy about asking. There are a lot of us here, young and living off a battery.

So wierd

by renee14150 - 2009-03-14 11:03:16

Hi I am 31 and just had my implant on 2/10/09. I also have 2 young daughters. I also went through a period right after of denial and "depression" as well as a tremendous amount of worry. But...about a week ago I just totally had a emotional turn around. I think any change in our lives is hard to get used to but something so permanent as a PM is even harder. I was able to vent to people on here and get great advice. One of which is to ask questions and demand answers. I had a great visit with my cardio he was great and answered all my questions. One of his best advice to me is to get back to your "normal" life. I am already back to work and feeling better mentally and physically everyday. Keep your head up and keep connecting with people on here....
Renee

Fear

by ElectricFrank - 2009-03-14 12:03:09

First off the pacemaker is very unlikely to quit. If it does your heart will likely continue to beat except slowly. How slowly depends on where the break in your AV bundle happened.

As far as being dependent on a electronic device keep in mind that we all are. If you travel by air the plane is 100% dependent on a flight computer to keep it in the air. If you have a late model car it is near 100% dependent on several computers to have braking. This experience has just made the whole situation much more noticeable.

As for activities, the AV block (more correct description than Heart Block) is one of the easiest issues for the pacemaker to deal with It simply senses the contraction of the atriium and uses it to stimulate the ventricles. This leaves your natural pacemaker in charge of atrial timing and your heart responds normally to exercise.

So you should be able to do most of the things that you could do before. Give yourself a few weeks to heal and then work back up to it. I'm 78yrs and still hike at 10,000' plus feet with the limitations of a 78yr old. I'm past the" very, very" part of living a long time though.

You sound like you were in good physical condition before the SVT came on and there is no reason why you can't get back at it. The riskiest thing to do is go around afraid of dying. This only gets you in lousy shape.

best,

frank

33 having 3 failed ablations, and PM

by Angelie - 2009-03-15 01:03:05

Jeez, Peter you have brightened my outlook on my upcoming (4th) ablation. After reading your post, I'm completely at peace...LOL
I say this with a humored heart. All is well, and believe me, after 3 failed ablations, I know first hand how risky ablations are.
Christen,
As many have mentioned, is does take quite some time to get used to the idea of being "battery operated". I prefer bionic, sounds more like I have super powers than simply running on lithium. LOL.
As I said above, in my sparring with Peter, I have had 3 failed ablations- one of which paralyzing the nerve that controls my breathing. That was a year ago and I'm still recovering from that. I was very disappointed that had happened to me, but I know that my talented, cautious, and diligent doctor did not mean to hurt me further. He tried to make me better not worse. This month, I'm placing my trust in him one more time to ablate again. This time he knows my difficult anatomy, and we both know what we're up against.
I'm telling you this because I know how frustrated you are. I have had SVT with other bad heart issues all of my life but they especially got worse when I was in my 20's -just when I should be on top of the world. Instead I was taking medicines and convalencing like people 3 times my age and older. I was the oldest 20 something, I knew.
Now I'll be turning 34 this year and have a pacemaker. I try to make the best out of my life regardless. 4 months after my pacemaker implant, I ran a 37 minute 5K run. I'm sure in the realm of things, that's a horrible time, but not for someone who's been what I've been through.
Embrace the good things in life. I know you're angry and rightfully so, but you have a TON going for you in this life. Two children, work, and a bright future in your schooling. Things will continue to get better, and believe it or not you'll get used to this little piece of metal helping your heart rate along.
Peace, and comfort be with you, and know that you're not alone here. There are many of us around your age here. Please just let us know how we can help you through this. That's what this website was designed for- Support, Information, Friendship, and sometimes we even have a little fun once in a while.
Enjoy life, and welcome,

Angelie

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