Getting a Defibrillator- not happy

[Shone'sGirl]

Hello again. I haven't posted since October, I think, when I got atrial fibrillation. I had an EP study done two weeks ago that determined that I have the potential for sustained ventricular tachycardia, so I'm getting a defibrillator on Jan. 14.

This really sucks. I'm 21 and my heart is weakening to some extent and I just got a new pacemaker in March and now they have to take that out and put in something bigger for a problem that I haven't even had yet. My surgery is one week after school starts back up so I'm going for a week and then missing at least one week, but probably two weeks of class.

So sorry this is kind of a rant. I just really thought that nothing would happen with the EP study and that they would tell me everything is fine and that 2008 would be a Year of No Surgeries. And I really hate missing class and having to tell my professors that I'm having heart surgery. It's just so abnormal.

Thanks for reading and letting me express my frustrations about all this.

-Clare

 

[gijanet]

Rant away........

Rant away........

You have certainly earned a rant. Clare, honey, I am so sorry that you have to get a defibrillator. I know you hate having to have another surgery, but try and look at it as a built-in security blanket. Lame, I know, but some people do really welcome the peace of mind a defibrillator brings. Still, I'm sorry that you have to face yet another procedure. Hopefully, Niki (Gnusgal) will be along to reassure you. She's just a tad bit older than you and has a pacemaker and a defibrillator, too. Sending hugs and keep us posted. J.

 

[georgi]

Boy, your right, It does Suck! Big time! You are so young to have to go through this I am just so very thankful that there is something that the doctors can do. This will at least give you a chance to get on with your life. Still, I understand where you are coming from. Hang in there!
georgi

 

[Phyllis]

Clare, I'm sorry you have to go through this, but Janet is right and you soon will be able to start school again and have peace of mind. I put you on the calendar for this procedure, so please be sure to let us know how you do- our thoughts and prayers will be with you.

 

[Gnusgal]

Janet is right. I have a defibrillator AND a pacemaker (the pacemaker is turned off, just not removed yet). And you're right, it does suck to have to go through all these surgeries. I've had 4 pacemaker surgeries and, ultimately, 5 defibrillator surgeries (due to complications that you won't face, I'm sure). I'm only 31. I got my first pacer when I was 7. It is a pain to have to go in for surgery, but once it's in and you're healed, you'll be able to forget about it for the most part. Not saying that you'll never think about it at all, but it won't be the focus of your life anymore.

Personally, I've gotten to where pacemaker or defibrillator surgery is just a way of life (sadly). Every few years I have to go in and get "recharged" so to speak. I don't think you'll have that problem. I'm 100% dependent on mine, so I drain the battery pretty quickly. But I certainly am grateful to have the technology! If not, I know for a fact that I would not be here today.

When I first got my defibrillator I was a bit freaked out at the idea of getting a big shock. But it hasn't happened yet and I'm hoping it never will. But it is nice to know that, if my heart goes into a dangerous rhythm, it will be there to keep me going. I plan to live a long, long life. And my ICD will help me do that. I don't think about it much anymore.

If you have any questions, or just want to vent, feel free to contact me. I know what you're going through!

 

[Cooker]

Clare?..yep it sucks?..but at least they are on top of things and as someone said this should help give you peace of mind. Sometimes I get to feeling sorry for myself??imagine having to have OHS at 49 ??..I was not going to say this but??it could be worse. There are many who never had the opportunity for life that we do. Best of luck???????Tom

 

[Susan BAV]

Clare, I'm sorry about all of this. But perhaps the thing will make you feel a whole lot better. My dad was having a lot of V-tach and he was supposed to get a debrillator but they ended up giving him another kind of pacer and he felt so much better from it--his heart worked so much better for him. I hope it will go well for you. Take care.

 

[AgilityDog]

V-tach at 65 mph

V-tach at 65 mph

Trust me, you want the defibrillator. I had my original heart surgery September of 2006, and got a pacemaker for complete heart block. After the Maze and valve replacement I had no more problems with a-fib. There was nothing in all my checkups to indicate I had a problem with v-tach, etc.
But last Friday morning, while driving to work (65 mph in the left center lane on the George Bush tollway, in rush hour, no less) I went into v-tach. "Only" a run of 30 beats from 160 to 260 bpm. I went blind, and it was all I could do to stay vertical in my seat. My guardian angel was once again present, and when my vision cleared I was in the far right lane, and able to pull onto the shoulder. I was 2 miles from the hospital, and was able to get myself there well before an ambulance could have arrived (though maybe not the smartest thing to do). After that experience, and knowing it could have ended in a major car accident or cardiac arrest, I'm thrilled to get the defibrillator, even though I didn't get home until Xmas afternoon. I'm home recovering now, sore and a little dizzzy from the Sotolol, but alive and glad to be here. Having this complication and a second surgery just when my scars were looking so good, and I felt like my life was back in control really sucks. I admit I am concerned about what this complication means for my long term quality of life (they had to lower my bpm from 150 to 140 because my v-tach started so low). I know it will affect running agility with my dogs for the next few months--I may not have the same stamina as before. Someone else will have to work them in class the next month. I may not be allowed to run Tank in his trial the end of January, because of the running and arm movements. We'll see. Jet may have to learn distance work a little sooner than planned-she's too fast to keep up with anyway. But we'll manage.

 

[Nancy]

Over Thanksgiving, a family member had a V-tach episode, then a heart attack while driving. He hit another car three times, and then sideswiped the same car, and ended up crashing into a bridge. It was all slow speed, so he did not injure the other person, but his car was a mess, and he ended up in the hospital and got a pacemaker and defibrillator. His potassium was low too, which might have triggered all of this.

That was because his doctor did not prescribe potassium while he was on Lasix. Stupid, stupid!

The acident could have been so much worse, and there could have been deaths.

 

[marky]

Clare..
I am sorry to hear the crummy news.. BUT.. VERY thankful that they are giving you the built in security system!!
I got my defibrillator 3 1/2 years ago.... I was pretty bummed..
But after ONE episode of VTach that almost killed me.. I am glad it is there. I hope it NEVER goes off..BUT if it does..then I know it saved me.
You will jump back into classes quickly. I know I was only out of commision through the weekend after mine. Just couldn't lift my left arm too high for a few weeks
Hope it all works out for you

 

[Gnusgal]

Oh, yeah. I meant to tell you, with my defibrillator I was only out of work (I'm a school librarian) for one week. But when they went in to replace a lead I was back within a few days of surgery (had to take off several beforehand just to get to the Mayo Clinic, where I had the surgery). The first one is always the most difficult. If they are putting your defibrillator in the same spot as your pacemaker, it will probably make it easier, since they won't be making a brand new pocket... Just a thought.

 

[Praline]

I know ...sometimes it seems like there is no end to this medical "stuff ". And when you think everything is back to normal, something else comes up. I sure know that feeling. If you feel like venting, this is a good place to do it. But at least they can do something about the problem.
I am sending positive thoughts and prayers your way.

 

[Guest]

And I really hate missing class and having to tell my professors that I'm having heart surgery.

Heh ... that can be an awkward/painful experience to have to explain heart surgery ... when you're so young.

Luckily, I didn't have to do that while in college, but, while I was in middle school (7th grade) in 1987, I had to explain to the principle and my teachers why I'd be absent the month of March ... for my open heart surgery. As I recall, I wanted to tell them first ... and then have Mom and Dad fill them in with the "gory" details. To this day, I'm not sure why I insisted on telling them, but I did.

*shrugs*

Surgery was the first week of March. In fact, my surgery was the night that "Rags To Riches" debuted with a 2-hr movie on a Tuesday night. Er, at least, that's what I remember..... I know Mom and Dad taped it ... then I watched it during the weeks I was home.

The first 3 weeks of March I missed of school ... the 4th week was spring break ... and I returned the week after spring break. My teachers had planned with the principle a "welcome back" of sorts ... both in the school office ... and in each individual classroom. In a way, it was kinda cool ... but, in another way, I was a bit mortified ... because, at that age, most kids didn't really have a good concept of what had just happened to me.....



Cort:34swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
WRMNshowcase.lego.HO.model.MCs.RT.CHD = http://www.chevyasylum.com/cort
"Nothing can take the place of being there" ... Marvin Gaye ... 'Ain't Nothing Like The Real Thing'

 

[Kathleen]

Clare I am sorry you have to get the ICD. I understand how you feel. I had to have my sweet little pacemaker removed and that honking ICD put in. I had a sudden cardiac death episode while driving. I would never want to have to go through one of those again. I still allowed myself to be so angry and tired of always having to be the patient. Even though you know it is the right decision we are still allowed to complain and stomp our feet. I had a tough time with my implant and had a hematoma the size of a softball. I came home from the hospital and told myself one week is what I would take to be ugly and drag myself around grumbling. After that week I was done and carried on. The newest of new ICDs have so many bells and whistles on them that they will amaze you. Once you make friends with it all will be well.
Let me know how it goes.
Kathleen
ICD---stands for "I Can't Die"

 

[geebee]

I do not have any devices so I do not truly understand but I do know that every time I had a medical issue I just tried to focus on how lucky I was to live in a time that things could be fixed.

Vent away - you are entitled and then try to remember it's better (I think ) than the alternative.

 

[musician2k]

Clare: I'm certainly with you on this one! I got a temp pacemaker after my OHS in 2006, and hoped that'd not be needed but it was, and so they put in a regular permanent pacemaker. Lots of people here are pulling for you, that's for sure! And your professors will understand and hopefully give you the work you need to get done so you can do it at home and not fall too far behind. Technology being what it is, maybe you can sit at home and watch your lectures on Youtube. =)