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The Uncertainty of CHD

Apr 18

Posted by: ACHA
4/18/2013 10:52 AM  RssIcon

By Becca Atherton

If any of you follow me on Twitter, you may know that I was in the hospital. I was having irregular heartbeats and my heart rate was getting up into the 130s. On top of that, these episodes were lasting up to two hours. Needless to say, when that would happen, I would be exhausted afterwards. So while in the hospital, they put me on some more medication to help stop these irregular beats from happening. While these episodes are not dangerous or life-threatening, they were extremely uncomfortable and made me beyond exhausted.

I am out of the hospital, and the episodes are not happening as often nor lasting as long. However, the medication I am on for them can (and has already) created problems for other parts of my body, such as my thyroid. So after I finish up school for this year, I will be going to California to see my doctors there to discuss two medication options. One of the medications, though, is a beta blocker, so I may not be able to use that (for a reason my mom and I cannot recall, we just remember in the past they did not want me to be on one). As for the other medication, we just have to make sure it does not interact with any of my other medications. And if none of the medications work, the other option is a procedure called ablation. However, that would be a last resort because of the risks that come with putting me under for a procedure.

I am home now, but I have noticed that I am not feeling as well as I have been in the past. While I was in the hospital, I was on a strict low-salt diet to help lower my water weight, which would then help my heart function. Well I got home and weighed the exact same… which is odd because I should’ve lost at least some weight.

What’s also a little worrisome is that daily activities that I have been doing for years without a problem suddenly make me out of breath. The other day I walked around my house to put away some laundry after folding it. I have done this ever since I can remember and never got out of breath before while doing this, but—I had to sit down and catch my breath. The other day I parked right in front of a building, walked inside and was out of breath, and I didn’t have to walk a long way or anything like that. So on the topic of getting an echo to see if my heart function is the same or worse… I want to know. But on the other side, if it’s bad news, I don’t want to know.

I’m hoping that maybe I’m still just recovering from being in the hospital and what has been going on. I am staying on my low-salt diet, so it doesn’t put any more stress on my heart than it already has. I will keep you guys updated!

Thanks so much for all your support, prayers and love! I appreciate it more than you could ever know!

Becca Atherton was born with tetralogy of Fallot, pulmonary atresia and pulmonary hypertension. She was adopted as a baby into a large multiracial family, where she is the second youngest. Becca was given a 13% chance of surviving to the age of five, but she is 20 years old and a college sophomore at her local community college. She loves to read, perform American Sign Language to music and write on her blog.

Copyright ©2013 ACHA

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6 comment(s) so far...


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Re: The Uncertainty of CHD

Hi Becca, my name is Rose and I had a similar thing happen. I would have atrial fibrillation and have to go to the ER to stop it. They put me on the same medication - amioderone, and it messed up my thyroid for good, I now I have to take thyroid medicine. I had an ablation and it did not work for me. Three months later I had a really bad atrial fib attack and they decided open heart surgery was the best course for me, to remove my enlarged right atrium. (I do not have tetralogy of fallot, i have hypoplastic right heart, pulmonary atresia, tricuspid atresia)

I also wanted to comment that your exhaustion and being out of breath could be due to anemia. I had the same thing and I thought it was my heart, but turned out I was severely anemic. Ask them (if they don't find anything with your heart) to look at your hemoglobin levels.

Hope this helps

By Rose on   4/18/2013 11:48 AM
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Re: The Uncertainty of CHD

Becca, I can really empathize with what you're going through. I was born with Pulmonary Atresia with VSD and MAPCAs. Last year I started having a lot of the same problems. Crazy tachycardia, light-headed, short of breath. They did an electrophysiology test to see what was causing everything and determine how to treat it. Turns out mu heart when triggered would go into ventricular fibrillation. They had to put in an ICD last August. I felt better for a while, but I've been having energy and breathing issues lately. I had a cath two weeks ago to open the stents in both my pulmonary arteries. I'm due to go back in May and have a Melody valve put in because my pulmonary valve has quite a bit of regurgitation. Ask your doctor about that. It's not for everyone, but in qualified people it can really help. They seem to think that's why I've been so out of breath. That and I have potentially developed PH. I hope this info helps you out. Thanks for sharing what's going on with you, and keep your chin up! :)

By Jennie on   4/18/2013 11:48 AM
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Re: The Uncertainty of CHD

I am a 45 year old woman who was born with Tetralogy of Fallot. I've had three surgeries, one in 2010 to replace my pulmonary valve. I felt so good after having the surgery three years ago. I thought wow this is great, I am cured...NOT. Recently I've had problems with shortness of breath and exhaustion. I also had an episode of discomfort in my chest about a week ago that I chalked up to my "heart condition". After reading your story I know I need to find a new cardiologist that knows my congenital defects, we just moved to Maryland from Florida. I need to realize this is a life long condition and am going to need to keep on top of it. So I just wanted to thank you for that. :)

By Rochele Gordon on   4/18/2013 11:48 AM
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Re: The Uncertainty of CHD

Hi Becca I'm Jae, 48 years old and I have Ebstien's anomaly I'm having the same issues so I got a pacemaker and put on Beta blocker and it messed up my thyroid for good I have Atrial fibrillation now a new thing to me called ventricular tachecardia I'm not spelling it right, But our prayers are with you and everyone with CHD

By Jane-anne Bruza on   4/18/2013 2:52 PM
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Re: The Uncertainty of CHD

Hi Becca - Hang in there! Thinking of you !

By Alissa on   4/22/2013 8:04 AM
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Re: The Uncertainty of CHD

Hey Becca! My name is Krista and I also have ToF (with VSD). It seems like last year was the year to have arrhythmias, because I also went through a period where I was having frequent PVCs and SVTs. I have been on a beta blocker for several years (I used to get PVCs once a month before Aunt Flow came to town) but because of the increase, I went to see an Electrophysiologist at UCSF in August and they scheduled me for an ablation in October. The ablation worked perfectly and I don't (really) have PVCs anymore. If you want to chat anytime, please let me know.

By Krista McIlmoil on   4/22/2013 2:40 PM

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