Wow I can relate to each of these stories.
I too was told I have "exercise induced asthma" been on inhalers for almost ten years.
I ended up with a triple by pass March 26, 2019.
I had no pain with any of this issue.
Recently started again with the shortness of breath, did another nuclear stress test and an echo, both I failed.
Had another heart cath. Found out that the vein used from my left arm is narrow restricting blood flow.
Medications changed and different medications ordered.
Shortness of breath is not as severe with the new medication. Started back at the gym to increase my abilities with cardiac rehab on the gym floor.
Yes everyday is a miracle and a gift. I too have had the cardiac blues. Went back to work at ten weeks.
Still working on healing. From my cardiologist and the surgeon it can and sometimes take a year. This was a trauma to your body, mind and soul.
Without this group, I have no idea where my head would have been. You have been an amazing part of my recovery and I am totally thankful to each and everyone of you.
We are all here for a purpose, lets make use of the gift we have been given and live life to the fullest.
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LINDA GRAMZ
MELBOURNE FL
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Original Message:
Sent: 08-27-2019 23:10
From: Tina Marshall
Subject: Adult congenital heart patients
Hi Jill and Everyone!
Jill, welcome to the group! I was born with Tetralogy of Fallot, which involves four defects, one being VSD (Ventricular Septal Defect). I needed my first surgery at about 14 months, a shunt to hold me over, and my second surgery, total repair, was done when I was 6 years old. After that, I led a pretty typical, active childhood and gave birth to two babies naturally. I continued to go to Children's Hospital (Pittsburgh) for check ups and now I attend their Adult Congential Heart Clinic. I agree with others recommedations to go onliine to ACHA and to stick with an ACHC doctor who understands us! I'm 52 now and began having heart arrhythmias about 5 years ago, so I'm being watched for them and for a leaky pulmonary valve. It's so amazing that you lived until 48 without discovering your heart defect! I'm sorry you were misdiagnosed and didn't get the proper care sooner, but so thankful you are doing well now. I will pray for your continued recovery and wonderful, migraine free days and no shortness of breath! ENJOY! Each day is a gift! :)
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Tina Marshall
Cranberry Twp PA
Original Message:
Sent: 08-26-2019 17:31
From: Jill Farfan
Subject: Adult congenital heart patients
I was born with a Congenital Heart defect (ASD primum) and I HAD NO IDEA until this year (2019). After an adventurous life of traveling the world, marrying someone from another country, a semi-stressful job as a licensed architect, having two beautiful children, living in South America for two years, relocating back to the glorious USofA, I had a mild heart attack in January at the age of 48... After three days of tests, a VERY LARGE HOLE was discovered in my heart. I had it repaired just three weeks later through open heart surgery on February 8th and I'm now 6 months post surgery and feeling good. I will "graduate" from Cardiac Rehab this week! I'm doing exercise that I never thought possible. In my late 20's, I was MIS-diagnosed with "Exercise Induced Asthma". I never believed I had asthma because that inhaler thing NEVER helped me do exercise. I was simply always out of breath... which apparently is the only real symptom for undiagnosed ASD. Apparently, my hole was so large that it could not be heard with a stethoscope! The other symptom that my cardiologist (my hero) said would go away is migraine headaches, which I had since I was nine. And guess what??? NO MIGRAINES anymore! Having this discovered was the BEST thing that has happened to me. Can ANYONE relate to my story? Are there other adults out there who didn't know they had a CHD until later in life??? I would LOVE to hear your story.... BLESSINGS, LIGHT & LOVE to all of YOU !!!
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Jill Farfan
architect
Lexington KY
Original Message:
Sent: 08-10-2018 02:56
From: Megan H.
Subject: Adult congenital heart patients
Hi Katie,
I was born with ASD and mitral valve regurgitation. They didn't find it until I was 4 and I was repaired at age 12. I currently live a pretty normal life..I exercise regularly, have 2 children and have been fortunate enough not to need more work on my valve just yet ( I'm a few weeks shy of turning 33). My daughter also has CHD, she had unbalanced AV CANAL with a single AV valve. She was repaired 10 weeks ago at age 5 weeks, so this family knows all about the struggle! I would love to chat about what your going through if it would help, it always helps me :)
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Megan H.
C.T.
Original Message:
Sent: 04-06-2017 13:33
From: Katie Hawes
Subject: Adult congenital heart patients
Hi everyone, I was just wondering if there are any others who are adult congenital heart patients. I don't know any and would love to hear others stories.
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Katie Hawes
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