Stressed from New Pacemaker

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Shone'sGirl

Member
Joined
Apr 14, 2007
Messages
19
Location
Arlington, VA
Hello. I'm new. I just discovered this site a couple days ago and I'm so happy to finally find a place for people like me!:)

Today is the 6 week anniversary of my new pacemaker. I got my first one when I was 11 and we had a wonderful, uneventful 9 years together. Then two days before I was supposed to go to Cancun for spring break, it died on me. I spent my spring break in the hospital instead. Then 1 month ago, at my two week check-up, my cardio realized I had a huge hematoma (a complication from coumadin) and I had to have an emergency hematoma evacuation surgery.

So this is my introduction to you all. I do have Shone's Syndrome (hence the name) I got my St. Jude's mech AV 12/11/96. (I love how so many people have one!) And my Cosmos II pacemaker 12/22/97- my 11th birthday (my heart has excellent timing). My new one is a Medtronic.

I guess my purpose for posting is that I feel weird because I haven't had surgery in 9 years and I'm mad that I missed my vacation and so I have all these emotions that I haven't really dealt with and I'm at school so I can't really deal with them openly. Any thoughts would be great.

-Clare
 
Hi Clare and welcome to the funny farm.

I don't have a pacemaker, but the anxiety issues you feel and deal with, I can relate too. First off, were too young for this to be happening to us, but you know what? It does not discriminate based on age. I guess we have to look at it as, we are still here, so we need to focus on being here and not let the shadows drag us back into doom.
 
Welcome Clare. You've come to the right place to share. Sorry about spring break, but here's hoping you have many happy and carefree days with the new pacemaker! You'll find many friends here on VR.com.
 
Welcome Clare! I'm glad you found us. We have several 20-something members that are regular posters, so I'm sure some of them will come along that can relate to your issues of being 20 and having to deal with major heart issues. But I think we all can relate in many ways, regardless of our age. We also have some heart Moms here with children around your age, so there might be some possible connections for you.

I was 22 when my valve problem was diagnosed (2 mo. after I married) and it was 10 years of very complicated history before I got my replacement. So I do understand what it feels like to be a young adult and have to mess with this "stuff".;)

You do need to work on your timing!!!! But I love how your comments show us that you do have a sense of humor regarding your situation. Sometimes laughter is the only thing we hang on to. And this family here LOVES a good sense of humor. Laughter truly is the best medicine.

We all have had our days where we spend our time railing over the fact that life has dealt us a tougher set of cards than many people. But there's always someone around here to sympathize with you, or if need be, a gentle nudgle to move forward.

Our weekends can be a bit slow. So have patience. There will be many people stopping by in the next few days to welcome you.

Best wishes!
 
I spent my Spring Break getting a new device as well! (I work in a school)

I understand your frustration. I actually had a hematoma following ICD implant 2 years ago. Unfortunately, I then developed an infection and the whole thing had to be removed. Fortunately, I still had my pacemaker in, so they just turned it back on. I've also experienced a pacemaker going into backup mode. Not fun.

Let me know if you want to talk. You can always PM me and we can chat. I'm sorry you had to miss out on your Spring Break. I've given up more than one Spring Break or Summer to have surgery. :( It stinks.
 
Welcome Clare!

Sorry to hear that you didn't get the break you deserved this spring. Life isn't fair sometimes, isn't it. Keep up the sense of humor, that's what gets most of us through too.

I was 12 when my valve condition was diagnosed but didn't have to face surgery like you did. Even still I didn't care for the Dr.'s and the tests and the worry. I went through another round when I got to college and I didn't like feeling "different". It helps to have folks in the same boat to talk to, that's what's great here. :)

Glad you found us,
Ruth
 
Welcome!

Welcome!

Hi, Clare--

Talking about spring break, I also gave up a couple related to my heart health. I was born with heart problems and had regular cardiology follow-up with my pediatric cardiologist until I was 21. Then, two years later during spring break, I started having arrythmia problems. At that point, I hadn't seen a cardiologist in two years. After leaving Dr. Wittner, I could not seem to find a cardio I meshed with very well, so I sort of gave up. At that time, I knew I had mitral valve prolapse and didn't forsee surgery in my future anytime soon, so I wasn't too concerned about finding a cardiologist. I was then referred to a local cardiologist after nearly passing out from V-Tach, but I didn't much care for him, and felt he could have treated my arrythmia better. As a result, I struggled for a while as a college student trying to balance my life with my heart issues. When that cardiologist left, I met the cardiologist I have now, and I absolutely love him--he's patient, knowledgable, and caring.

Last year during spring break (I'm a teacher), my mitral valve failed. I ended up leaving my students the rest of the year to have surgery. Talk about timing!

Anyway, Clare, one thing I just want to point out (and I'm assuming you are still with your pediatric cardiologist) is this: When I was 15, I had some heart tests at the hospital where my pediatric cardio worked, and I remember the echo tech telling me that I would need an adult cardiologist in a few years. He said, "Most adult cardiologists treat their young patients like they're 80 because most of their patients are elderly. You may have to take some time to find a cardiologist that knows how to treat congenital cases." I didn't think much of it then, but it turned out to be true for me. When it comes time for you to need an adult cardiologist, do your homework and find one that has experience with congenital heart disease.

Glad to have you here!
Debi (debster913)
 
It just isn't fair for a young person to go through this. You should be "foot loose and fancy free". Instead you are dealing with very adult, life and death decisions. The only solace I can offer is that I think that it will make you a stronger person and that will help you later in your life. This is what I tell my 16 yr old son who has just gone through an AVR and pacemaker implant.
Stay strong.
 
clare,

I am 20, myself, and have very similar heart issues to you, I havent been Dx'd as having shones, but I do have several left heart defects (VSD repd, left ventricular outflow tract obstruction repaired, mitral stenosis, bicuspid aortic valve, and regurg, and borderline coarctation of the aorta,) I am looking at surgery within 20 yrs on my valves.

I dont have any experience with pacers, but I do know the vacation thing, this past january during winter vacation I almost passed out on the treadmill three times, was not fun, and I spent the next 3-4 weeks dealing with testing, and worrying, and appts, and stuff I missed buying tix to a concert that is tonight because of all the stuff going on, and the lack of money, I was so mad. but one thing that came of all of this is an epiphany: I am not gonna regret anything, or wish I had done anything I wanted to do while Im in that hospital bed in 10 yrs or so, "carpe diem!" (see the quote in my sig)
anyways, I think you should check out www.achaheart.org its the adult congenital heart associations website there is an awesome forum there, and a few ppl with shones post on it pretty often...
I hope to keep talking with you!
Morgan
 
Clare:

What a bummer ... spending spring break in the hospital! One year after I graduated from college, I spent my only week of vacation in bed with tonsillitis. So I can understand how you feel.

What is your major and when do you plan to graduate?
 
I'm a film major and a creative writing minor. I plan to graduate May 2009. I want to be a screenwriter, but it's extremely competitive, so I don't really know exactly what I'm going to do after graduation. I also want to write a memoir about all my heart stuff. I have so many stories...

-Clare :)
 
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