Potential Pacemaker

Hello,

I am currently writing this from my hospital bed in Austin, Texas. This will be 50th visit to a hospital and my 10th overnight stay since I was first diagnosed with explainable if not even rare heart arrhythmia problems. I used to be a ballerina, I was very good at being a ballerina too. I had my entire career laid out, and then I took the summer off when I was 16. Before I tell what happened that summer, my entire life I knew something was different about my heart. My mother used to comment that I was her "miracle child" because my heart would skip a beat in her womb. They even induced labor two weeks before I was supposed to be born because they were afraid of the skipped heart beats.

After I was born, things seemed fine, I never had a symptom other than having an abnormal heart beat. No murmurs, no leaks, just an interesting heart beat that doctor's would listen very closely too and then say nothing at all other than "hmm, that's different." and then move on.

The summer I took off to pursue being a teenager, before starting my world tour as a ballerina, was the summer that changed my life. I had a mild heart attack, that kick started all of these arrhythmia's. I am now 24, soon to be 25 and have still not gotten a good answer as to why or how.

I have ventricular tachycarda, atrial tachycardia, ventricular fibrillation, atrial fibrillation, bradycarda, PVC's, and general arrhythmia. I've had 4 cardiac ablations, been on every heart medication known to mankind, and still the doctor's are scratching their heads as to what is wrong with me.

This past weekend I had several episodes of chest pains, skipped beats and all the normal fun that goes with being a heart patient. I tend to stay out of hospitals, due to being poked and prodded without a good outcome. Also, I have no insurance, and it costs a lot to get treatment in America. I usually feel better after 72 hours of hell, but not this time. So I marched myself into the ER and was admitted almost immediately. The word around town was that I was potentially going to receive a pacemaker.

This is both exciting, and scary. I lost my dreams of being a famous ballerina to my heart disease. Only to struggle to find answers, treatments, anything that would alleviate my problems, only to be turned away or told there was nothing that could be done, to now, sitting waiting to find out if I have finally earned my pacemaker and a start at a better and less miserable life.

My question is how many other young adults have pacemakers and how did it affect your life?

I'm potentially scheduled for my pacemaker this weekend.

12 Comments

Life Changing :)

by Heidiglassmeyer - 2012-06-14 02:06:20

Greetings from a fellow Texan :). Either you're a night owl like I am or the medical staff/monitors are keeping you from sleeping.
If you are a new member you will hopefully hear from the many young members such as yourself. I myself would not fit that category (I'm 43). I can relate however to the hope that a PM may resolve some of your health issues. Although my "story" is not as serious as yours I can relate to years of non-diagnosis in my teens, again in my 20's, 30's, to current when I passed out on my 40th birthday leading up to my PM surgery the beginning of 2010.
Growing up I was a competative swimmer and remained very active as I got older. Pre and post PM I have continued competitive swimming at a Masters level. I bring this up because having a PM has put no limits on my ability to live the same life I did before the PM. Just a better one :). Getting a PM may not be the end all of your heart condition but will hopefully resolve some
Of the issues. Hopefully between the PM and meds you'll find a good balance.
As a female I would suggest if you have PM surgery consider having it placed submuscular so it's less visible and request a plastic surgeon to close you up. This is something that may not be brought up so you may need to ask. Others will probably chime in but I had mine relocated under the muscle and had my scar cleaned up when I had my PM relocated and I'm much happier with the placement now.
I wish you the best over the next few days and if a PM is in order, hopefully it will be the beginning of a new life for you!
Keep us posted :)
Heidi

Thank you!

by rawkstarerin - 2012-06-14 03:06:17

Thank you everyone who has commented so far. The doctor's are still unsure what to do with me. Overnight I seemed to have "stabilized" and am no longer showing the heart rhythm patterns I was that concerned doctor's to begin with. That's always the case with me, as soon as I have problems, they do get better on their own, but come back, often.

I am encouraged by the stories shared, so thank you for the confidence boost so when the moment comes and I do get some kind of treatment option like a PM, I won't fear it, I will embrace it.

I only want a week to go by where I feel good, feel vibrant. At least once or twice a week I have issues, and it is draining. So far I am still in the hospital and the rumor is now that I am going to be released to follow up with my EP.

My EP is very good, I handpicked him, researched what he studied and what his EP specialty is. I have burned through EP after EP, they all give up. This one is determined not to give up on me. He genuinely wants to make me better, and doesn't want to rush into something won't work. For once in my medical history, I trust a doctor!!

Thank you again for the support and stories. You are all wonderful and amazing people.
-EJ

young?

by ronilee - 2012-06-14 08:06:05

Heidi, I would consider you VERY young!
Ronilee

For the better!

by jenny97 - 2012-06-14 09:06:37

For me, PM implantation changed my life so drastically for the better, that I consider July 13 my new birthday, and I love all Friday the 13ths because that was my lucky day!

I was about your age when I got my first pacemaker 10 years ago. For me, the difference was night and day. I had been passing out multiple times a week and had tried every medication possible because I really didn't want to get a PM. I was young and naive and thought it would limit me in my activities for the rest of my life. I was sooo wrong!

The only regret I had after I got the PM implanted was that I hadn't gotten it a year earlier when the drs first pushed me to do so. I woke up from surgery feeling better than I had in the previous 15 years. I had more energy (and I hadn't even realized that I'd been lacking in energy!), I didn't have so many skipped beats (PVCs were worse though, for a while), and I didn't get out of breath doing simple things.

It is not always the case that the change is so drastic and noticeable - it takes time to get the settings right. And I've had intermittent problems even with the PM (often related to changes to the settings). But I will never forget that moment of realizing that my life had changed and that I could finally achieve my goals (running a marathon is a dream I am still pursuing, for example).

I hope that you feel better soon, and that whatever treatment is implemented in your case is effective and enables you to have your life back!

Wow

by Peg541 - 2012-06-14 10:06:20

That's some story. Have you been to TOP specialists in the EP department? Maybe better answers but without medical insurance it's tough.

I will tell you that since I got my pacemaker in January of this year I feel better than I have in a very long time. People are telling me how much better I look and act since the pacemaker.

It changed everything for me.

I hope you get some sort of relief. Yes your ballerina dream did not happen but there are many other dreams out there for you to realize. You keep on fighting.

Good luck to you and check in OK?

Peg

pacing

by Tracey_E - 2012-06-14 11:06:13

I was born with my heart problems, have had a pm since I was 27. I'm 45 now and it's done nothing but help me. I feel terrific and can do whatever I want.

Something to be aware of. A pm will add beats to a slow heart, it will fill in beats when you skip. When your heart goes fast on its own, all it can do is sit back and watch. I'm no dr and I only know what you have said here, but it sounds like a pm is not going to be a magic fix for you.

Are they discussing just a pm or an icd (pm with defibrillator)? If your racing is dangerous, and vfib is dangerous, an icd may be more beneficial than just a pm because it can shock you out of a life threatening rhythm.

Getting insurance when you have preexisting conditions is easier than it used to be but still way harder than it should be. Best of luck to you getting answers and feeling better.

thank you

by SUPERSALE - 2012-06-14 11:06:18

when i born i had hole my heart i think heart murmurs but it closed up when i 2 year old now im 33 years old in march 2012 i was in hospital for my 1st pacemaker i saw the bill for the hospital it was alots of money 60,000.00 i have insurance that paid it good not all but help me alots now i owe about $800.00 i hope you have insurance ....

Hello!

by jessimay - 2012-06-14 11:06:27

I'm 24, almost 25 as well and have been having issues for over three years now. I can't even count how many times I have been in the hospital. Since last July I have had seven surgies to fix my arrhythmia. A few ablations, an epicardial ablation and a thoracic sympathectomy. My last surgery they completely took out my sinus node and I am in junction rhythm and waiting for a pacemaker; finally.

I know it's hard being young and going through this. My life was pretty much put on the back burner also. I know for me at least It will give me my life back, and if that means having a thing in me so be it.

My doctors were very hesitant to do anything to me due to age. The best thing to ever happen to me was getting my loop recorder. It's the size of a flash drive and they implant it in your chest. Mine is my breast. It constantly records what is going on with the rhythm. The doctors can see exactly what is going on. They also get a clearer picture then the monitors. It is definitely something to talk about if they are not sure what is going on with you.

As far as insurance you should be able to get Medicaid if your personal income is less than 900$ a month I think. Each state is different I believe. If one of your parents have insurance you are allowed to be on it until ou are 26; even if you are married or do not live with them.

I hope some of this helps. If you ever need to talk to someone feel free to message me! Best of luck!

Jessicya

Loop Recorder!

by rawkstarerin - 2012-06-15 02:06:15

As far as insurance goes, I am screwed. Both parents are on Medicare and cannot put me on their insurance. Also both are re-married and are unable to put me on their insurance. I made the mistake when I was 18, to get off my father's insurance because I wanted to be independent. (Also my father is a tyrant and would yell at me for using the insurance.) I wasn't able to get on health insurance after that. I live in Texas where it is short of a miracle to get on Medicaid. I'd have to be pregnant before they'd put me on Medicaid and my EP feels that me becoming pregnant is a worse than bad idea. Trust me when I say I've tried everything I possibly can to get on insurance.

More to update on, I am comfortably at home and will be getting a loop recorder soon. I am looking forward to the potential outcome of having that done. I've never had one, this is the first time it's been offered to me. I am keeping my fingers crossed that more good things will come out of this.

I like making progress, not twiddling my thumbs.

confusion

by rwagenblatt - 2012-06-15 08:06:20

While our general conditions leading to a PM are very different, the having to cope with gettting answers as to why we're in the condition we are and dr's not being able to explain why are frustrating. Godspeed.
RW

PM

by mckate - 2012-06-16 11:06:43

Hi! I'm 26 and received my first PM at 21. I was born with congenital heart disease also but not the same conditions as you. I have complete AV heartblock, mitral valve prolapse, and SVT (atrial tachycardia). With all your tachycardia issues it sounds like you'd benefit from an ICD as well. Pacemakers keep your heartrate up, which would help you when you were suffering from bradycardia but won't bring a heartrate down. Have they discussed an ICD or just the PM?

The PM has completely improved my lifestyle. I suffered my entire life from being exhausted and unable to keep up with others. I ran my first mile without having to stop or feeling like I was going to pass out after receiving my pacemaker. That is the best feeling in the world. The downside? Placement. My current one is in my breast and sometimes makes wearing a bra moderately uncomfortable. Seatbelts are almost completely intolerable, but I think that's mainly because I have two large keloids from surgery. But besides the obvious scars and some irritation with clothes/belts, life is better! I had a healthy pregnancy and now my son will be 3 soon.

I hope you get answers soon. You do sound like a very special case. If they can't find an answer I'd go to another state. I realize you don't have insurance, I've been in the same boat. The laws that Obama changed with healthcare states that you can be on your parent's insurance until you are 26. My father's insurance allowed me to even extend beyond that until I'm 29. By then I'm hoping to have a job with insurance that'll cover me. I'm stuck not getting accepted by any other insurances and not qualifying for medicare. You could try applying for disability and getting care that way. If that isn't successful the hospitals always work with you. I've had thousands of dollars dropped and have payment plans with multiple doctors currently. Most hospitals will work with you as long as you keep open communication.

pm from car accident

by kermiehiho - 2012-06-19 04:06:41

I'm 26. I got my pm when I was 24, because I was hit by car, and the impact damaged my heart enough so that it wasn't beating properly and would sometimes stop. So my case is somewhat reverse - I had a normal life before the pm, and now I have an almost normal life. Moments like getting patted down at the airport, putting a pad over my bra strap to avoid rubbing on the scar, or holding the cell phone on with my left hand to my right ear so that I can write with my right hand are little everyday reminders of the normalcy that I lost.

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