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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Update on me

I haven't been on here for a while. The last post on My Page is from 9/3/11 and I am in a much better place now so I thought I'd post an update here.

At age 34, I had my sinus venosus asd with partial anomalous venous return (that's a mouthful...lol) repaired (open heart) on 6/20/11. In September I still felt horrible so my Cardiologist got me into cardiac rehab. I can't tell you how much of a blessing rehab has been. They started me off slow on the treadmill, hand bike, bike and free weights. I've worked up to 30 minutes on the treadmill at an incline and a fairly fast pace, 5 pounds of free weights, 20 minutes on the bike, and 6 long minutes on the hand bike with a decent amount of resistance. I spend about an hour and a half at rehab twice a week.

I still get fatigued but nothing like I was experiencing a year ago. I still have palpitations/racing heart but I notice this mostly when I'm laying in bed. Is that weird? My blood pressure has been low more than it has been high. My heart rate is on the high side at times so I sit for a few minutes and drink some water and that seems to help. I am also continuing Metoprolol (probably forever) for arrhythmia.

With the rehab going so well, I went ahead and bought a treadmill and a stepper to use at home. We also have an exercise bike and weights and I'm doing yoga again. I need to lose the 50 pounds I've gained over the last four years because of inactivity due to how crappy I felt. I know the extra weight doesn't help my heart and I don't want to stress it any more than it already has been. Plus, now that I can actually be more active, my chronic pain is so much more manageable.

We took a 10 day family vacation to Disney World and I held up a lot better than I thought I was going to. Even carrying my kids through the lines didn't seem to affect me any more than it did my husband. It was nice here today and I took my kids on an hour long walk without my husband. I can't tell you how good it feels to be a mommy to them again.

Such a short time ago I was suffering so much physically that I was in a very dark place emotionally and I couldn't see how anything was ever going to get any better. But it has gotten better. I have so much hope for the future. I am excited about feeling good again.

I go back to the Cardiologist in March. Hopefully he will have nothing but good news for me.

Best wishes.

Natasha,

Thanks for the update. I am so pleased to hear how well things are going for you.

Your experience is invaluable and I know others would love to hear about it.

Remind me where did you have your ASD closed and which doctor/doctors performed the closure?

Keep us posted on your progress and please don't be a stranger to the community.

John

Thanks to moderator for linking to this old thread, re weight gain.

But I found it helpful for different reason - I also get flutters / palpitations when lying in bed ! I wasn’t sure if I was just noticing my heart beat more in the quiet, but I didn’t think so. I wonder if it’s about change in blood pressure, like happens when you stand up suddenly.
One other time I often notice flutters, is if I go out in cold air and walk too briskly from the start. Happens less if I slowly increase pace, or if I wear a scarf in front of my mouth. Doesn’t happen if cold indoors, only seems to be if breathing cold damp outdoor air.

Anyone else noticed patterns re flutters?