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Not My Average Heart Year

Jun 27

Posted by: ACHA
6/27/2014 11:20 AM  RssIcon

By Jennifer Gooden

Up until this point in my life, whenever I would go to my twice-a-year cardiology appointments, I would do and hear roughly the same thing. I would get my vitals, EKG, and echo done and then my doc would come in and chat with me and tell me things look “about the same” and that I should continue with my meds—and I would keep on trucking along. That was my average heart year.

Unfortunately, this isn’t my average heart year. I would say that I am having the worst heart year ever. In my last blog post I explained that I was admitted for the first time in more than 20 years. Well so far this year I have been admitted three times, have worn no fewer than five Holter monitors, plus a BP monitor, and have had my first cardiac ablation.

Atrial arrhythmias (abnormal heart beats from the top of my heart) have been the bane of my existence. Late this summer I go for what will be my last cardiac ablation. After this, if I continue to have arrhythmias, my EP doctor recommends getting a pacemaker placed.

Because of how they fixed heart more than 20 years ago, my doctor says I am at increased risk of both atrial and ventricular arrhythmias. Also because of this, it makes placing a ventricular lead for the pacemaker almost impossible the usual way, through the skin. So if the time comes, they can place just an atrial lead. Later, if I need the ventricular lead, I would need another operation.

Due to my unique anatomy, placing a ventricular lead would not only mean another surgery but means that I would need to have my chest re-opened. This obviously carries a lot of risk and has brought up a lot of scary talk.

I am trying not to worry because there are still time and other options, but it is hard! After so many years of good heart years I am not sure how to cope. How do you cope with less than ideal heart news? Do you have a pacemaker? How did placement of it go?

Jennifer Gooden was born with transposition of the great arteries and tricuspid atresia. After four heart surgeries, she is proud of her single ventricle. To give back to medical community, Jennifer became a nurse. She now works as a cardiac ICU nurse at the same medical center where she had her four surgeries.

Copyright ©2014

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Location: Blogs Parent Separator ACHA Blog

8 comment(s) so far...


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Re: Not My Average Heart Year

I'm reading from my phone so I can't see everything on the site but I had my leads placed during my Fontan Revision. They are actually in my abdomen and threaded up from there. I don't actually have a pacemaker though. I understand completely about the from good news/no news to bad news thing. I was the same way. I was 28 when I had my revision (a yr ago) and I was terrified.
Honestly,
Best thing I ever did for myself. Hands down. If you'd like to chat please email me. I see your a nurse so you are so much more educated. I am a paramedic. I think our knowledge is both a wonderful thing and a horrible one. We know how much can go wrong. :(

By Jessica Krause on   6/27/2014 2:04 PM
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Re: Not My Average Heart Year

Hi Jennifer,

I was born with tetralogy and pulmonary atresia and have had several surgeries and interventions, including a pacemaker. Sorry to hear about all the arrhythmia problems lately. To answer your questions, I would always go to appts expecting the worse (maybe not the best, but I don't go more than 3 years without some kind of intervention). Getting bad news doesn't affect me as it prob should these days. I'm used to it.

My pacemaker implant went fine. I'm not a single ventricle so my pacer is transvenous, but I do have 3 leads. I remember having virtually no pain, just some soreness. I've had it for 8 years now. I just had my original pacer replaced in August. I forget I have one at times. It just becomes part of you.

If you have any questions let me know. I'm also a nurse and work in pediatric cardiology with the doctors I've been going to my whole life.

By Shawn on   6/27/2014 3:02 PM
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Re: Not My Average Heart Year

Oh my goodness Jen, I could have written this myself it seems. I was also born with TGA, as well as pulmonary stenosis and a hole in my heart. All were corrected in 1979 when I was 5 via the Mustard procedure. My story is like yours. I had been trucking along with my yearly check-ups and echos and would get an all clear and be on my merry way. Then last year (at the age of 38) I had a bout of tachycardia and afib. I was cardioverted and then was good for about 11 months. Then again 2 weeks ago the same thing happened. My doctors are now planning to do a heart cath to determine the functionality of my heart and either change my meds or replace my current pacemaker with an ICD/pacemaker. What's worse is that they are talking about me potentially needing a heart transplant down the road. Needless to say I am emotionally spinning. I had been going along so well and honestly most days I forget that I am a "heart patient". I live a normal life, I have two small children, I have lots in life I still need to do. I completely understand where you are coming from.

As far as a regular pacemaker, I have had one since my original surgery when I was 5. It has never been an issue or a problem. I am however more worried now about the ICD and being "shocked" while awake. The cardioversions weren't bad, as I was under anesthesia, but not sure how I feel about a machine inside me "shocking" me on the spot. My doctors want to do the ICD before they want to try an ablation.

Hang in there....I know how you are feeling and hopefully it is comforting to know there are others out there like you. I know it makes me feel a little less isolated in this (my family and friends are great....but at the same time, they just don't quite understand). You will be in my thoughts and prayers. I would be happy to chat as well...good luck!!

By Kim Tinker on   6/27/2014 3:17 PM
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Re: Not My Average Heart Year

I understand just how you feel. I have been good for 40 years and have been in and out of the hospital 3 times in 1 yr. I also have atrial arrhythmias. Had an ablation try with no success. I now have a biventricular pacemaker with AICD. Still having the atrial tach despite meds. I have a had a hard time all year with being the patient again. I am also an RN who is use to being on the other side of the bed. I am getting sick of hearing that " we are learning on you". Friends are helpful but they just don't understand. Having a good MD who is supportive is helpful. Keep you chin up, I am beginning to realize that this is my norm now. But I am now very grateful for the 40 yrs of good health. Let me know how you are doing.

By Roberta D on   6/27/2014 3:17 PM
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Re: Not My Average Heart Year

My daughter, born 1979, had her surgery in 1980. Has done well until last October, then began having an atypical atrial flutter, was cardioverted, then 2 months later same issue again, had an ablation. She is going to be 35 in September. Right now she seems ok except during those events she was left with a right paralyzed diaphragm. Anyway, I admit I have not tried to research it yet but want to ask if you guys think that these arrhythmias seem to start showing up in the 30's and 40 years of age?

By Jo on   6/27/2014 5:47 PM
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Re: Not My Average Heart Year

I have a pacemaker with both atrial and ventricular leads fed under my skin to my heart. Pacemaker is by my shoulder under my skin. It has been awesome. No major problems and I love working out. Write me. I am praying for you.
Liza

By Liza on   6/27/2014 7:24 PM
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Re: Not My Average Heart Year

Less than ideal heart news sucks. And it's definitely scary. I always found it helpful to view procedures/ surgeries as my path to more "good/no change heart news" years and fewer hospital visits.

I've had a pacemaker since I was 18 (21 years ago) that was switched to an AICD when I was 28. And yes, an ICD "delivering treatment" (a euphemism if I've ever heard one) is painful and surprising but it's better than the alternative. And in the 11 years that I've had my ICD, I've only been "shocked" 3 times which seems like a good trade-off for the piece of mind of a battery back up and not feeling crappy because my heart wasn't functioning at full capacity.

By Sarah Owens on   6/27/2014 8:47 PM
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Re: Not My Average Heart Year

Jennifer - I am a tricuspid atresia / Fontan patient as well and had a pacemaker placed just three weeks ago. Mine was an epicardial placement, which sounds like the procedure you would expect as well. Everything has gone well for me - happy to talk through the procedure and recovery if you're interested in emailing!

By Steven on   7/17/2014 5:17 PM

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