It seems that this may be noticed at birth, but other times it shows up in your thirties. How about you, how old were you when this was determined?
Not until I was 62 and had a bunch of tests following pulmonary embolism. I had palpitations for years but md said probable anxiety. Finally had bubble echo which showed the ASD
- Lucky to live that long. Had more than one large hole. Good thing I was non-smoker, thin, runner, and nearly vegetarian cuz I have cholesterol around 500 too.
Hi Sallie,
Good to hear from you! That was a LONG wait, I'm sure you struggle countless times before this was recongized and addressed! There are so many stories of long waits on all of the BF communities, and I'm really not keeping track, but there is a member on CMT (Charcot Marie Tooth) who waited 67 years. My heart goes out to both of you, to all of you.
There's much to be said for Doctors who do not 'over test' us and totally wipe out our financial resources, but on the other hand, there has been too much suffering because more tests were not done, or perhaps not available at the time, and we were dismissed or diminished.
I'm certainly not bashing the medical community, I have Doctors that I honor and adore. The medical community has come a very long way, but still has a very long way to go!
I hope that they were able to address this and help you to better health.
Wishing you well,
SK
Yep. I had failure to thrive as an infant. Had many doctors tell me I had a heart murmur. But none took the time to investigate. I was even told no physical education in school in middle school. (I didn't abide by that, though.) Even went to a accredited hospital in the area that sent me home w/anxiety! Finally I could not walk across the room from breathlessness and tests were done. And ASDs run in my family... All female. Two of my sisters and two of my nieces! Thankful I found a doctor who took further action or I wouldn't be sharing this.
M
Hello Mia,
Thank you for responding! You were indeed lucky to live that long! I'm amazed that you were able to RUN!
I'm certainly not a heart expert, but lost my baby brother to cardio myopathy, and saw first hand what it was like for him to live in a third floor walk up apt, or keep food down!
I certainly hope that they were able to get you to a better place to enable you to live such a rich life. You were wise to make such good lifestyle choices and have the genetics for a thin frame! On my mother's side, she had aunts that were quite rotund, but they were lovely ladies who worked hard. Being nearly a decade into autoimmune, I see it 'sneaking up on me', so it's about time I take more care with my intake! You are a good reminder!
I look forward to getting to know everyone here. It was very good to hear from you!
Sending my best,
SK
21! At the time i thought it was amazing it had been missed for 21 years...now I think it's lucky it was caught so young!
I was diagnosed at 18 after my pediatrician heard a heart murmur for the first time.
Hey Laurull,
What a coming of age surprise that must have been! I'm so very glad it was discovered and addressed!
I can only imagine that most of us can look back and see these things nipping at our heels. You know what they say about hind sight?
I was diagnosed with Rheumatic Fever at age 5, I also had 'growing pains', so this was the beginning of my ills, but I fought through it until the third rear end car accident that I could just never get over. finally my Internist diagnosed me with 'overlap syndrome' and Fibromyalgia. Overlap syndrome is having various symptoms of several autoimmune diseases without a confirmed diagnosis. Seven years later I finally (7 years later) found a Rheumatologist who after going over a detailed questionnaire he had mailed me, looked at my pitted fingernails and determined my primary was Psoriatic Arthritis, and Sjogen's syndrome and Raynaud's Phenomenon were secondary. Confirmed the fibro, but guaranteed me that was the least of the problems!
There are so many categories involved with autoimmune, like rheumatic, connective tissue, neuropathic, systemic...that you feel like you're in med school trying to get a grasp of what is happening!
We've all traveled such long roads, it's good to meet up along the way!
Thanks for taking part!
Be well, be happy, be young,
SK
Mia, I'm so sorry to hear that you had such incredible illness at such a tender age. Children should NEVER suffer more than an occasional skinned knee. It's such a heartbreak that anyone, especially a child, has to become this drastically ill to get things in motion. I'm so glad someone finally came to a realization that this was REAL!
Mia said:
Yep. I had failure to thrive as an infant. Had many doctors tell me I had a heart murmur. But none took the time to investigate. I was even told no physical education in school in middle school. (I didn't abide by that, though.) Even went to a accredited hospital in the area that sent me home w/anxiety! Finally I could not walk across the room from breathlessness and tests were done. And ASDs run in my family... All female. Two of my sisters and two of my nieces! Thankful I found a doctor who took further action or I wouldn't be sharing this.
M
About 56 I would have to go home and look up the date. I went to doctors all my life trying to find out why I felt as bad as I did. No one found it. I got Afib and still it was not found. I was going to have an ablation and someone who knew what they were looking at was giving the echo that time. If it had not been found then I guess the doctor doing the ablation for Afib would have seen it. (A joke , but not much of one.) It has been a life that would have been different if someone had really look and not just told me I must be depressed.
Julie,
Hello! I'm so very glad this was finally heard. Do you think this was that the condition first appeared, or worstened? Then again, perhaps the stethoscopes were greatly improved.? Oh I know they are big questions, that you may never know the answer to. You know when I come into a group to help out a mod who is under the weather, I can read, and read, and read about the disease/condition, but I learn so much more from the members. They are the ones who LIVE it.
Thank you so much for joining in! I look forward to getting to know ALL of you! It means a lot to me that you would share your stories.
Wishing you health, wealth, and happiness,
SK
Oh Fay,
Why is everything attributed to depression, anxiety, your nerves, then there;s the bored housewife bunk... Why in the world can't they realize that anything chronic that cannot be realized and addressed by the Physician will cause incredible self doubt and anxiety? I have met very few who suffer that have not had some degree of this wasted time.
I'm so glad you made it through, it seems that the most fragile of hearts are the best warm and wonderful ones!
Thank you so much for joining in, I look forward to getting to know you. ALL of you!
Take good care,
SK
I was diagnosed at 43 years old. My doctor luckily kept me overnight at the er and when the ekg was being done I asked if I could have a hole in my heart. She looked harder and low and behold there it was. I asked because my mom had one. Now we know my sister has one. I also had to keep pushing since after my closure I continued to have issues. They diagnosed me with diastolic disfunction and left vent. stiffening progressed into heart failure. I too went to the dr. all the time. Why am I so tired? What's wrong with me? Telling them this can't be normal. There were signs now that I know more. In High School I would run track and my leg would go completely numb. I think that was my body not being able to handle that much exercise. No one thought a thing of it. I thought they would have caught something when I went through my probably 8 surgeries up to the diagnosis. I also had breast cancer right next to my heart and the radiologist decided to make the call not to have radiation due to the proximity to my heart. Now I know he probably saved my life! Funny how things happen that way sometimes.
Oh, yeah and the comment about depression, anxiety, nerves all fit me too. I do think my nerves went on overload now I know it was and is my blood pressure rising. I can feel it now and know it's happening. This really amped up for about a year before I had the meltdown which caused my diagnosis. I would twitch every time I tried to sleep. So after about a year of not sleeping my body shut down. My doctors now think it had to do with my sympathetic nervous system and prior back surgery and rupture in the thoracic area. Lots more to the story!
OMG Stace! You have just been though the proverbial ringer girl!
So many things seem to be hereditary/genetic, things we cannot even imagine, just like this, a hole in your heart! To think that you had to go into heart failure to get a diagnosis is just the most frightening thing imaginable!
NO wonder nerves get frayed, we get depressed, exhausted, touchy, crazy, when we're not taken care of. You were listening to your body speak to you, in a loud, clear voice. Had you not mentioned the fact that this was in your immediate family, they may not have looked at it as closely and found it.
I can only imagine that this is not always an easy fix, working on the heart has to be very difficult for the Surgeons as well as the patients, and because of the function of this muscle and all the systems connected to it, I'm sure it's a complicated process to get to some semblance of normal/new normal.
No wonder you went into meltdown, there is only so much a living creature can withstand, we're all breakable, and not easily fixable. All systems are connected, we are ONE UNIT! This is a phrase my Chiropractor uses, ONE UNIT. It seems overly simplistic, but it makes more sense than pages, and pages, and books, and more books sometimes. We can over complicate things to the point where nothing clicks when trying to search for answers, but often times it is just the most basic of answers that turns on the light bulb.
So glad you saw this discussion and contributed to the group, Stace. I thank you so much for telling your story, at least some of it, and am newly hopeful that we can have an honest to goodness group here. I think it would be good to hear all your story, when you are ready.
You all have so much to offer each other, and I honestly hope that you are all in a better place right now, because you were finally diagnosed and treated.
I'm looking forward to getting to know all of you!
Stace, take good care of yourself! Hopefully your unit is now in good working order!
Sending good thoughts for glowing health,
SK
SK said:
OMG Stace! You have just been though the proverbial ringer girl!
So many things seem to be hereditary/genetic, things we cannot even imagine, just like this, a hole in your heart! To think that you had to go into heart failure to get a diagnosis is just the most frightening thing imaginable!
NO wonder nerves get frayed, we get depressed, exhausted, touchy, crazy, when we're not taken care of. You were listening to your body speak to you, in a loud, clear voice. Had you not mentioned the fact that this was in your immediate family, they may not have looked at it as closely and found it.
I can only imagine that this is not always an easy fix, working on the heart has to be very difficult for the Surgeons as well as the patients, and because of the function of this muscle and all the systems connected to it, I'm sure it's a complicated process to get to some semblance of normal/new normal.
No wonder you went into meltdown, there is only so much a living creature can withstand, we're all breakable, and not easily fixable. All systems are connected, we are ONE UNIT! This is a phrase my Chiropractor uses, ONE UNIT. It seems overly simplistic, but it makes more sense than pages, and pages, and books, and more books sometimes. We can over complicate things to the point where nothing clicks when trying to search for answers, but often times it is just the most basic of answers that turns on the light bulb.
So glad you saw this discussion and contributed to the group, Stace. I thank you so much for telling your story, at least some of it, and am newly hopeful that we can have an honest to goodness group here. I think it would be good to hear all your story, when you are ready.
You all have so much to offer each other, and I honestly hope that you are all in a better place right now, because you were finally diagnosed and treated.
I'm looking forward to getting to know all of you!
Stace, take good care of yourself! Hopefully your unit is now in good working order!
Sending good thoughts for glowing health,
SK
Forty Five. When the surgeons told me I had a hole in the heart I thought to myself "A hole in the heart is better than a hole in the head." But the mirth stopped the minute they said "We caught it just in time...another six months and you'd most likely be a candidate for a heart transplant.
The irony - I'm a vegetarian since birth and guess what. They patched the hole with the pericardium of a cow. So I told everyone including the surgeons to watch me very carefully in ICU. If I mooed -- they were in trouble.
Hi beyaflor,
Welcome to the group! Glad to see you on the boards!
I love your sense of humor, it is very brave of you to joke about such an intense procedure! It's astonishing how parts of other living things can make such a difference in our lives, even if we're a vegetarian!
I'm so very glad they caught this in time. I have a friend in another group on Ben's Friends who has been through a liver transplant, and the transition has been very rough on her.
Wishing you well,
SK
I was 59 years old when they found my ASD. I had been told by a local cardo that I had pulmonary hypertensoin and he was referring me to Duke Hospital to see a pulmonologist. i saw her and went throught the battery of tests, and then we scheduled the right sided cath. That's when she found the hole. As I was laying there listening to them talk I hear her say " well look here a hole.. hmm" She finished the cath and then came to my side to explain what she found and told me there were two ways to correct it, withe open heart surgery or they can do a closure with a device but they would need to do more test to see where the hole was and how big it was.
So I had an cardiac MRI done right after my cath. The pulmonoligist came in and told me how big the hole was and where it was located and that it could be done with a device. She told me she would refer me to the surgeon but it might be a wait as he was pretty backed up.
I do believe if I didn't have AFIB and CHF that this would have never been found, as I had been in the emergency room with my AFIB and my dr was the one that referred me to the first cardio Dr.
Now I'm really wondering how long I 've had this hole because when I was younger I never could do any type of running and was told I had childhood asthma and would outgrow it. And my mother was always told I had a heart murmur and that's why i tired easliy.
But in the end it's all worked out