young and a little scared.

hi.

i stumbled on this site this morning, and i'm THRILLED to find a community in which i can post concerns related to my pacemaker and heart, and have others understand, and hopefully be able to help guide someone else through their mess...

i got my pacemaker in late february this year (happy birthday to me! most expensive b-day gift anyone ever gave me. thank you aetna! HAHahaha.) and have been healing up just fine. (i have brady/tachy syndrome, AF, MVP and MVR.) the problem is that the medication i'm on for the AF doesn't work. we've upped the dosage twice, and now we're of the collective mind that it's just not enough -- and we're going to go in for surgery in the next three weeks.

i'm 30. we've been screwing around with this stuff for two and a half years (since i had gastric bypass 11/05) and i'm grateful for this procedure -- especially if it works -- because it'll mean an end to the yo-yo. but i'm also terrified. this is the second heart surgery, or surgery involving the heart at all, that i'll be having in four months. i just feel very alone. no one i know has gone through anything like this, except for the elder generations (over 60, over 70, that sort of thing.) and i don't really know what to expect. hell, when they put in my pacemaker, they sent occupational/physical therapy to my room with a walker. i'd already done four miles around the floor!! it's like no one knows how to react to a 30 year-old active, independent, vivacious heart patient.

my real concern is this: i'm having a catheter ablation. i work in disability, and i know what the expectation for healing is in a patient who's over 60, but none of my documents have anything about a young patient, and what they can expect. i've also not found any postings on the internet from anyone near my age group...i just don't know where else to turn. can anyone help? has anyone had a pacemaker and catheter ablation under the age of 35? what was your recovery time? were you awake? does anyone else have BTS?

7 Comments

Young people

by joy1 - 2008-05-27 01:05:54

Hi tpod,

I don't know a thing about ablations other than I wasn't a candidate for one. too bad, so sad ~wink~. I thought Il'd chime in though to say there are alot of people on this site who are relatively young agewise and certainly the vast majority who are young at heart...PMs and ICDs help that along a bit ~wink~ Anyway... there are kids who belong to this site in their teens all the way up to people in their nineties. it seems that the average age ranges around the sixties. It would be interesting to have the admin do a survey and maybe form sub member groups based on age. Personally, I am 48 and had my first heart problem, a heart attack at age 32. I was shocked because I didn't think young people had heart problems and certainly not women. I've learned alot since then and strive to get the word out at every opportunity.

Good luck with whatever choice you make and whether it works or not this bunch of o;' thumpers will be here to talk with, cry with, and generally try to help you get through your trials

Joy

Us Young-ns

by candi51 - 2008-05-27 03:05:45

Welcome to the PM/ICD club!
I am 31 yrs old and scheduled to receive my ICD on Monday (the 2nd). I have met a TON of people on here in our age range and as joy said lots of other FUN folks young at heart! I too had a misperception that this whole PM/ICD stuff was more for the 70-80 age range- Boy what an eye opener I have had!
I was diagnosed with Left Ventricular Non Compaction in Feb and it has been a whirlwind!! I am lucky enough to have had time to ask questions before my procedure and this site and it's AWESOME members have helped me SO much! I didn't even know what questions to ask or what to expect. It has also been great to get on and chat with folks. Sometimes when I am feeling down or overwhelmed I log in and usually end up smiling by the end of it!!
Best Wishes with your upcoming procedures! And don't ever be afraid to insist on a 2nd opinion if you don't like the 1st one!!

Hugs-
Candi

Hi!

by dw5281 - 2008-05-27 05:05:22

Hi tpod! I got my pacemaker in feb to & it was a week after my birthday as well - wasnt quite what i was expecting - turning 27 was rubbish ha ha! i'dve rather have had the money thank you very much! like Brooklynn I had little warning as well - but at least i had a day rather than 12hrs!! i havent had an ablation i'm afraid so i cant help you there - i just wanted to say that youre not the only one with an expensive birthday present this year!!

Reading your post - i have it easy compared to you! I have no medication & no hassle - i really feel for you! My pacemaker is dual lead to make sure my heart doesnt stop - which it likes to do from time to time!

Good luck with your procedures I'm positive that your drs will have thought of everything. Though i noticed that mine were not really forthcoming with the info - & as it was all a shock i didnt answer nearly as many questions as i should. I ended up putting a pad of post it noted on my coffee table & whenever i thought of something i didnt knw/understand i wrote it down so i could ask! I found that really useful - you never remember even when you say you will!!

good luck

Debs x

somewhat same boat=)

by Brooklynn - 2008-05-27 10:05:30

I just got a defibrillator (and the threw in a pacemake for free=) ya right!! about a month ago. I was really sore for about a week or two and now its just a question of getting used to it and all the meds. I am also thirty, but only I had about 12 hours warning before mine got put in or even that I had something wrong with my heart..no family history, high blood pressure, cholesterol..NOTHING!! I too stumbled on this site, and I was so suprised to learn that many young people are experiencing this too. I can't offer you much advice, being new myself, but I know there are a lot of more experienced really great people on this site that will no doubt be able to ease your fears..good luck=)

caution...

by bambi - 2008-05-27 11:05:38

I will say right off the bat that I'm 51. It doesn't sound like you want to hear from us oldies, but your diagnosis and symptoms are a lot like mine. I got my first pacemaker at 45 after years of trying to control my brady/tachy symptoms with meds. I then went to an EP who did 3 catheter ablations that actually worsened my symptoms. I, in hindsight, would have researched these ablations more, asked more questions, and sought a second opinion. Once the electrical pathways are identified and ablated [burned out], there is no turning back. That heart tissue has been destroyed permanently. Your pacemaker is equipped to handle your arrythmias and most of the newer ones have features to handle Afib. I think we all make the assumption that our heart issues will disappear after we get our devices. I wish the Dr.'s would explain that they do not. We are safer, because instead of passing out due to slow rate or your heart pausing, and going into dangerous Vtach or other life threatening issues, the pacemaker will assist our hearts to keep that from happening. I myself would have relaxed a lot more if I had known this. I felt it was my "duty" to tell my Dr. about every PVC, PAC, skipped beat, Afib run, ect. He finally told me, after I expressed annoyance at his seemingly cavalier attitude to my complaints, that all these symptoms was WHY I had the pacemaker! As far as the actual catheter ablation procedure, it is not a difficult one at all. I had a little sedation, and pressure had to be held on the groin for 30 minutes, and you can't move your leg for hours. They will probably observe you overnight and you'll go home the next day. You can resume most activities immediately, but your Dr. will give you instructions on what he recommends just for you. There are quite a few young people on this site, so if they can help you in other ways, I'm sure they will. Good luck!
Bambi

THANK YOU

by tpod - 2008-05-27 12:05:57

thank you both for your comments. i'm not HAPPY to read that there are people in my age group with similar experiences, exactly, but i'm glad to hear from some of you.

bambi, i hope you are not offended. it's not so much that i don't want to hear from 'oldies,' as it is that i'm trying to get in touch with other people under 70. you are right in the active-young-adult range, so thank you so much for your input. i'm just really really nervous about all this.

for me, the pacemaker is only a single lead, and unfortunately, the best they've been able to do about the a-fib (which has become chronic and nearly permanent) is to record it. the interventions they've programmed with my device have not worked, and have, in fact, made the pauses between a-fib and normal sinus rhythm longer and more pronounced. i wish, in a way, it was just a matter of noticing the a-fib, but it's far more than that. in my case, the a-fib couples with a severe tachy rhythm (around 180 usually) even after coming out of the af. because of this, i'm pretty sure that the ablation is the best bet. my doctors assure me that it will HELP, but may not CURE the af. to be honest, anything. ANYTHING. would be better than what's happening now. i am often exhausted despite plenty of sleep and little activity. i have fairly frequent dyspnea and have taken to having naps every day to try and keep my energy up. i'm thirty, and i act older than my grammy. it's simply no way to live.

anyway. thank you so much for your input. i'll be raising a lot of questions at my consultation with the hospital EP next week. i appreciate anything you all can come up with, as far as things to ask. (so far, it's the standard how many have you done, any perforations, which of my meds do i need to worry about, etc etc.)

thanks again,
tpod

Here's my story

by janetinak - 2008-05-28 04:05:17

Well, tpod, I am an oldie but a goodie with a similiar tale I think to yours. I was 59 when I was SOB & pooped all the time as you describe. I got up in AM after sleeping well & brushed my teeth & had to rest, etc. Believe you know what I am saying. To get to work in AM I had to start over an hour earlier than I had before I got Afib. My rate stayed at 160-180 ( what they could catch on EKG & probably higher) despite max doses of a lot of drugs & lots of cardio-versions. I spoke with the EP in my cardio practice & he & I were both worried about my quality of life (it sucked) & liver problems due to all those high doses of drugs which were not working much anyhow. So I went for an ablation (had to be done twice, a month apart) & a single lead PM in ventricle. After 1st abalation I felt great with PM but my Afib was over-riding the PM. So did some more ablation & now feel like a kid again. I am 100% dependent. Ablation & PM was done after two years of trying different drugs & the cardioversions. I know that makes me a lot older than you but our situations are similiar except I got PM with abalation. Hope this helps.

I am now 68 & 1/2 as the kids say & on my second PM. Never been sorry I did it. Not sob or other symptoms as before & only drug I am on is Coumadin 'cause the Afib still there but as my cardio said last wk after a routine EKG almost can't tell I was in Afib as PM doing such a good job. Hope you have as good an outcome.

Janet

You know you're wired when...

Your pacemaker interferes with your electronic scale.

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