Hi ASD survivor

liog

Hi I found out last May (age 34) that I had a sinus venosus atrial septal defect with papvr (pulmonary veins draining into the wrong chamber). I had open heart surgery in June to correct it. So far so good. Cardiac rehab helped to jump start my recovery. As of September there was no change in the right side enlargement. Hoping for good news when I go back to the Cardiologist in March.

vicmonster

Amazing that it wasnt diagnosed earlier. Have you had symptoms your entire life? Will be hoping for good news for you! Please keep us updated.

liog

In hindsight yes, I've had mild symptoms my whole life. But, I played sports and exercised a lot in my teens and twenties. However, everything got worse after I had my first child and 18 months later when I had my second everything continued to spiral downward. I had high blood pressure at the end of my first pregnancy, and had preeclampsia early on with my second. Terrible adema. The high blood pressure did not go away. I never recovered from that second pregnancy and over time everything began to fall apart.

When my son was just a few months old I began having palpitations. I saw a doctor when he was a year old. I had tachycardia and high blood pressure, but for some reason she didn't want to proceed with anything until I stopped breastfeeding.

Over the next year the fatigue increased to the point where I couldn't get out of bed to feed my kids breakfast. The palpitations increased. Migraines increased. I couldn't walk up a flight of stairs without having to rest halfway up. I would also get completely winded walking from my car to the house or store. I didn't have the strength to pick up my kids. I had terrible stomach pain. Numbness in my extremities and a feeling of hot pricks all over my body.

I finally found a new doctor who referred me to a pulmonologist and a rheumatologist. I continued down that road for a few months with so many tests and so much blood work and no answers, until April when I had an episode of Surpaventricular Tachycardia. Luckily my husband was home. While we were trying to decide what to do, my little boy ran and got his toy stethoscope and came running into the room to help me. I thought I was going to die. My heart rate was almost 300 beats per minute and I had to be treated in the ER to get back into a normal rhythm. From there I was referred to a cardiologist who found out what the real problem was.

With all of the symptoms I described, all of the doctors listened very closely to my heart, but no one, not even the surgeon ever heard a murmur. And because of that I think I was dismissed by most as a fat girl with high blood pressure.

I don't know what the prognosis will be. Hopefully the right side will return to normal size or at least close to normal. Hopefully I'll be around to see my kids grow up and maybe get to play with a grandkid or two or three and travel the world with my husband after he retires.

Woah. Didn't mean to write a book. :laugh:

vicmonster

Sorry for such a delay in responding. Been thinking of your upcoming visit in March.

I have to tell you I'm curious about all of this because my 14 year old son has some congenital heart defects but he has really been very fortunate. He had an ASD and a VSD repaired as an infant and one of the holes required a patch, then the patch had a leak until the lining of his heart grew over it and closed it. He has some aeortic stenosis as kind of a left over defect but has been in overall good health and is very athletic playing football, baseball and basketball. Last year he had another issue with SVT and had a cryoablation to correct it. It had actually been going on for over a year and he was confusing the syptoms with his asthma. He's a very brave kid, as you are a brave lady!

Now that there are so many advances in pediatric cardiology, I worry whether the cardiology field has kept up to be able to properly treat these patients as adults with repaired hearts.

Please continue to keep us posted on how you're doing.

liog

Sorry for such a delay in responding. Been thinking of your upcoming visit in March.

I have to tell you I'm curious about all of this because my 14 year old son has some congenital heart defects but he has really been very fortunate. He had an ASD and a VSD repaired as an infant and one of the holes required a patch, then the patch had a leak until the lining of his heart grew over it and closed it. He has some aeortic stenosis as kind of a left over defect but has been in overall good health and is very athletic playing football, baseball and basketball. Last year he had another issue with SVT and had a cryoablation to correct it. It had actually been going on for over a year and he was confusing the syptoms with his asthma. He's a very brave kid, as you are a brave lady!

Now that there are so many advances in pediatric cardiology, I worry whether the cardiology field has kept up to be able to properly treat these patients as adults with repaired hearts.

Please continue to keep us posted on how you're doing.

Thank you for the thoughts and your son's story. It sounds like he's been through a lot but is doing well, I take medication for the SVT. My Cardiologist says if it happens again then we'll do the cryoablation.

I will definitely post back after my next appointment.

JackieMac979

Thank you for sharing your story with us. It's now March 5th so I hope your recent or upcoming appointment will go very well!

My son goes to his cargiologist tomorrow. He has had an ongoing sickness and due to a lack of free time, I haven't been posting as much here as I'd like. Sorry I didn't write sooner!

Heart hugs,
Jackie

liog

Thank you for sharing your story with us. It's now March 5th so I hope your recent or upcoming appointment will go very well!

My son goes to his cargiologist tomorrow. He has had an ongoing sickness and due to a lack of free time, I haven't been posting as much here as I'd like. Sorry I didn't write sooner!

Heart hugs,
Jackie

I hope your son's appointment goes well. I go back on March 15. Hopefully all will be fine and dandy.

liog

Had my 9 month follow-up today. Everything is great. Doc said I didn't need an ECHO because everything sounded fine. He gave me the go-ahead to work beyond my previous heart rate max of 138. So, I feel great and all is well.

Jessb1985

Great news! Hopefully even better in the next 9 months

vicmonster

GREAT NEWS!

vicmonster

Jackie - how is your sone doing? I hope all is well, Vicki