My son was 12 when we found his ASD in May 2010. Surgery was a very scary thought. We visited with the pediatric cardiologist and scheduled surgery for the Amplatzer Occluder device placement through catheter for late August. He was up and active that evening. Only spent one night in the hospital and returned to school in one week. When he was younger he didn’t have symptoms either. At about age 8 he was placed on asthma medications along with seasonal allergy meds because he would get tired and winded while playing sports. He also got frequent nose bleeds. He hasn’t needed those medications or any others since the surgery and even though he missed the 2010 football season he has played football, baseball, and basketball the past 2 years without complications. He grew 8 inches in the first 6 months after surgery and his color was instantly better. During the year before surgery he became pale, had dark purple like skin under his eyes and eye lids, and really slept a lot. We thought he was going through a growth spurt. The reality was his body wasn’t getting the oxygen it needed because the ASD wasn’t allowing the blood to flow to the lungs. I’m not sure what will happen in the years to come for him but i do know that this device along with great doctors saved my son. He’s had several echo’s in the past 3 years and the device (a little larger than a quarter) hasn’t shown any signs of malfunction. I believe we made the right decision. Good luck with your son and watch for the signs I listed about my son. I wish we had known about the ASD years ago but I’m a firm believer in everything happens for a reason. Please make sure his schools and any other caretakers know his condition. Our doctors told us our son could have been one of the statistics where he may have collapsed on a ball field at any time if we had not found the ASD when we did.
I had 3 holes closed,2 as big as a quarter and 1 smaller one,I also had nose bleeds bad when I was young and very white looking with low blood pressure,they said I was a anemic ,but back then I guess the doctors didn't really know all they know now.I am 55 years old now I only had it done 11 months ago.
I am happy your son is doing well,I am also a believer things happen for a reason,my doctor also told me to have my children checked,when we r born they call it a murmur and it will close in time,,now they know a murmur has to be checked on as we grow,,if the hole closes or not.
Hi. As a parent this has to be a difficult decision, rather to wait or to proceeded with this procedure. What do the doctors say? If he is not having symptom,do they still want to proceed?
Hi, I was reading all the responses. At first I thought I should not share my adult experiences.
I am 55 years of age. I was always a physically active child. I never had symptoms indicating I may have an ASD. My symptoms began two years ago. During workouts I was out of breath, and felt dizzy. I was always tired. Then, I had a minor stroke. It was then I was diagnosed having an ASD. I am doing better. I am not tired, nor do I get dizzy. I just remembered, prior to the heart procedure, an x-ray was taken of my heart. It appeared normal. 15 days after the procedure another x-ray was ten f my heart. The one prior was an image f a rage heart. After, the x-ray revealed a smaller heart. I hope this info was helpful. You and your child will be in my prayers.
My name is Sharney I am on my husbands email,,not to good on opening one for myself,,I am 55 also,,I had mine done in October 2012,my xray showed an enlarged heart,then the MRI showed the 3 holes and 2 strokes,when I first got it done I felt great..but now I am so tired all the time.I own my own business and sometimes it takes all I got to stay there all day.I am going back to the Doctor on the 22 to find out what is causing all the tiredness,hope its just minor,I will keep your little one in my prayers.
jlgf42 said:
Yes, like I said do what is right for your son and your family. All you have to do is keep the faith and feel comfortable in your decision and it WILL all be OK! I should have also mentioned that I am 43 years old and NOT a child. Take Care!
Hi Sharney,
I too tire easily. But I wonder if its caused by the weight gain. I have gain 10 pounds. I am restricted from working out. After work I am so tired, that I eat dinner and go to bed. Not good. Two days ago, I woke up with swollen lymph nodes. No evidence of an infection. They placed me on antibiotics. Today, I feel much better.
S
What about Gore Helex occluder? Does anyone have any experience with that device? From what I understand no cases of long term tissure erosion have been reported with use of the Helex. Most of the device is covered in material so that only a very small portion of the nitinol actually touch the heart. I'm not sure if I mentioned in my first post, but that was one of the concerns I have with the ASO, with nickel being both an allergen and carcinogen. These both sound like good things to me, but I don't know why Amplatzer would be the choice for cardiologists over Helex, which is less corrosive. Also since Helex has been used less, I assume there is less data on that device. If anyone has any answers or experience with Gore Helex device I would love to hear from you. Thank you all soo much!
My daughter's cardiologist was very excited about the Helex and thought it was the better device, had she been eligible...the surgeons who insert them said no way because her rim was too short to attach it to. I think it depends a lot on the size of the ASD. Like someone else posted earlier, newer may mean better technology but also less long-term data on results. Have they told you the size of the ASD?
As far as I know the Helex is only about 5 years newer than the Amplatzer. His ASD is about 10mm x 8mm, it's considered moderate in size. I read that the the Helex is for anything up to 15mm. All of his rims are sufficient.
Hi! Sorry my response is late. At 16 when I went to the cardiologist they did not find my asd. They diagnosed me only with mitral valve prolapse and said I was fine. As I got older and complained of fatigue my doctor tested for everything- except my heart since I had a full cardiac work up at 16- and was cleared- he focused elsewhere. Just last year I met an amazing person who happened to be a cardiologist. After his continued prompting- I let him take a look. My asd was situated in such a way that was difficult to see because of my rib cage. He found it and saved me. I had my procedure just a week after discovery. It was 2 months ago. I am short of breath which is annoying- I’ve gained 2 lbs. and that’s about it. I’ll keep you updated on how it affects me later on. Best wishes!
My mother, sister, and I all have had holes in our hearts. It is hereditary in our cases. My mom's hole was large and fixed through open heart surgery about 35 years ago. She lived a long and very healthy life. She was an strong as an ox. Her doctors had her wait until they felt confident with the progress that had been made back then with heart surgeries. I, however, did not know I had a hole until it had done damage to my heart. I began having symptoms suddenly at age 44 and had asd closure. Now that I look back at my health issues I probably had subtle symptoms for a very long time that I just attributed to working hard as a second grade teacher. I always felt tired and wore out sooner than others. I felt great for 5 weeks following the asd closure and then everything changed. Since then, I have developed heart failure (diastoic dysfunction with left ventricle stiffening and atril fibrillation where your heart beats like a fish out of water. There is nothing more debilitating than not being able to walk across a room due to shortness of breath, inability to think clearly, or being able to do everyday things like take a shower. I am non functioning more than I feel well. All I know is that if it were my child I would not wait until symptoms or damage has occurred. Unless a heart cath is done the doctors just don't see the damage. In my case it took 2 years for them to ok the double heart cath and then OMG they pulled in four different cardiologists because they could not believe what they were seeing. I would definitely go for open heart surgery if I had it to do over. I wish you the best of luck in your decision. I know it would be a difficult one.
Hi. I am 56 years old. During my High School and College years, I participated in Track and Field as a long distant runner, and was on the Swim team. It wasn’t until I was 54 years old, that I noticed fatigue and shortness of breath while working out. It got to the point that breathing was difficult. In Sept 2012, I suffered a stroke. It was then, I was diagnose with a ASD. The TEE results, shunting left to right. The ASD was 7mm, but in certain position was 1 cm. The device was sized at 25. The doctor stated they wanted to make certain it was covered. My point…I lived 55 years with no symptoms or knowledge that I had an ASD. I was told symptoms appear as we get older. My device is the Ampltazer Septal Occluder. As of today, I am feeling well. At times I have lots of floaters, and may feel a bit dizzy. But nothing like before. What concerns me is the possibility of erosion. I don’t know for me which would have been better, OHS or my device. I am just thankful to be here. I pray that all of us, who have the Amplatzer live a full happy life. God Bless.
Please read and inform yourself.
I was 54 when I got three holes closed,,the told me I would feel much better,but they failed to tell me my always low blood pressure would go through the roof,,I would end up A fibulation also I would be taking a truck load of pills for the rest of my life and rat poison would be one of them,,I feel like a walking drug store,,not allowed to eat green food,no glass of wine to relax once and a while..ended up with divaticulitis in my bowels,,the pain was horrible,,I am happy to be alive,,but would I have died without it,I hate pills,,I wouldn't even take pills for headaches..look at me now,,I have my own little restaurant,and I love it,,love working,love people,,I think the doctors should tell you the what to expect after the surgery...I bruise easy now,,I am always black..got to go for blood work every week,,can not go on vacation, its a total change of life,,I love life,,but I am always scared now that my heart rate won't spike out of control.then its the ambulance and the cost for that is not cheap...and I believe very much in God,I pray every night,,do the Doctors do this cause they care,,or is it for the money..makes me wonder.PS also the pills r putting weight on me like crazy,,but they tell me thats a side effect....
It’s been five years post surgery, atrial septal defect repair with the amplatzer occluders. Six months ago, I woke up from a nights sleep with a headache, throwing up, light headed and diarrhea. I drove my self not once but on three separate occasions to the ER. Blood pressure was elevated. 148/78. Normal is 110 /60. Only to be told I must have eaten something to upset my tummy. I told this to my cardiologist. She prescribed low dose of blood pressure meds. Within the last couple of months my blood pressure was as high as 199/85 and varies between 140/ 80 119/75.
I was told as I get older my blood pressure would fluctuate. I am concerned. I will be 60 in a few months.