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Adult congenital heart patients

  • 1.  Adult congenital heart patients

    Posted 04-06-2017 13:34
    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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  • 2.  RE: Adult congenital heart patients

    Posted 04-07-2017 02:04
    I had a congenital heart defect. It was a bicuspid aortic valve. I knew about it since I was 10 years old. My mother had surgery at 47 and 50. I required open heart surgery at 53 years old when I also had an aortic aneurysm that was identified by way of a echo cardiogram. I'm 64 now.  My grandfather had a abdominal aortic aneurysm that required surgery in his mid-70s. Yes this is hereditary. 

    What kind of information are you interested in? I'm open to share. I am actively involved with the San Diego Chapter of Mended Hearts.  

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    Karen Christian
    San Marcos CA
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  • 3.  RE: Adult congenital heart patients

    Posted 04-07-2017 20:18
    I was born with a bi-cuspid aortic valve.  It was repaired when I was 8 years old.  At age 58, I had a second surgery to replace my aortic valve with a mechanical valve. So, I am an adult congenital heart patient.

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    Bill
    Garland TX
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  • 4.  RE: Adult congenital heart patients

    Posted 04-07-2017 20:32
    Hi Katie!

    We have a lot of adult CHD patients in our membership. I'm a mom of a Son with a CHD (he's only 8) but I've met a bunch. Even the President of MH, Donnette Smith was born with a CHD. 
    Glad to have you here. Hopefully some others will chime in and share their story.

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    Andrea Baer
    Director of Patient Advocacy
    Mended Hearts/Mended Little Hearts
    Grapeville PA
    7243967820
    Director of Patient Advocacy
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  • 5.  RE: Adult congenital heart patients

    Posted 07-26-2018 20:21
    ​Hi Katie, and others,
    I wanted to let you all know about the Adult Congenital Heart Association at Adult Congenital Heart Association - Home


    I have been a part of the ACHA for 5 years as a CHD provider.  The great thing about the organization is that providers AND patients work together to improve care for people with CHD. I encourage you all to take a look. They have the most complete information on defects and resources you can find and have an "ambassador" program that can link people with the same defects to get questions answered. I know a lot of people reach out on social media to get help but the ACHA, as with Mended Hearts are trusted resources that I recommend! I have been a member and speaker for my local Mended Heart chapter and think the combination of resources is awesome.  I'm happy to see so many people reaching out for more CHD information! 

    ACHA remove preview
    Adult Congenital Heart Association - Home
    Treating congenital heart defects in adults is to understand the continuum of the disease from its infancy. The Adult Congenital Heart Association brings together valuable research, training opportunities and standards of care to help you help your patients and further define this specialization of cardiovascular disease.
    View this on ACHA >
    .

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    Camille Richards
    601-984-4567
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  • 6.  RE: Adult congenital heart patients

    Posted 08-10-2018 02:56
    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.
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  • 7.  RE: Adult congenital heart patients

    Posted 08-26-2019 17:31
    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
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  • 8.  RE: Adult congenital heart patients

    Posted 08-27-2019 23:11
    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
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  • 9.  RE: Adult congenital heart patients

    Posted 08-28-2019 06:22
    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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  • 10.  RE: Adult congenital heart patients

    Posted 08-29-2019 13:28
    Linda,

    I enjoyed your response.  I support 'living life to the fullest' after Open Heart Surgery.  When I thought I was having complications after surgery (which I wasn't - just fear induced from acclimating to my newly patched heart), my cardiologist said to me, "just live your life."  BEST ADVICE.
    I agree that this is a great forum to help 'elevate' our spirits... which need mending as well.  We all have 'dips' and need to get re-aligned with our 'selves'.  Please reach out fellow recoveries... I enjoy the discourse. :) :)

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    Jill Farfan
    architect
    Lexington KY
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  • 11.  RE: Adult congenital heart patients

    Posted 01-04-2020 23:21
    I'm new to this sight and I think I found it just in time. I have the blues. I feel it's more like "survivors guilt" because every time I hear about someone passing away from a heartache I feel guilty. Once it hit close to home and I lost a great friend. I found out about my ASD at the age of 49. I needed gullbladder surgery and things came to a halt when a spot was noticed on an x-ray. When I was diagnosed in April 2018 the hole was the size of a dime. By the time I had OHS July 12 2018 the hole grew to the size of a quarter. The doctor called me a ticking time bomb. I started to feel that amazing energy about 4 months into recovery and it was amazing. Then I got sick again and I lost that energy. I thought I was going to die. It turned out I had a kidney stone lodged up in my kidney. I had to have kidney stone surgery which I caught a terrible infection and had to forego kidney surgery again. That was in August of 2020. I haven't gotten that energy back and I feel the blues more than before. My heart is still enlarged from the damage that was done over the years of being undiagnosed. Is anyone else like that?

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    Carrie Kashani
    Parapro
    ISD
    White Bear Lake MN
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  • 12.  RE: Adult congenital heart patients

    Posted 01-08-2020 08:00
    Hi Carrie, I can relate to part of your story. I was diagnosed with ASD primum at the age of 48 after having a mild heart attack. I had open heart surgery in February 2019. It has been 11 months since my surgery and I’m feeling really good. My only symptom was shortness of breath, which was misdiagnosed as exercise induced asthma In my 20s. I’m curious as to why you have damage to your heart from it being undetected? From my understanding, a hole in the heart does not cause any damage to the arteries unless they were clocked for some other reason. I don’t have any damage to my heart. In fact, I just feel improved and my condition of the heart is improving the more I exercise. Your kidney stone is a separate thing but it could be causing a lot of your issues. Are you doing regular exercise? This can help a lot… I wish you the best and I hope this helps.




  • 13.  RE: Adult congenital heart patients

    Posted 01-09-2020 19:27
    Hi Jill. I started to get that amazing energy about 4 months into recovery. I was never diagnosed with anything in the past. I liked my naps. I really wasn't into playing sports when I was a kid either. My family just called me lazy. That new type of energy was unbelievable. My cardiologist at the Mayo Clinic told me that I was going to feel something I never felt before after surgery that that's the time I will understand how sick I really was. She was right. I suddenly lost that energy and I got really tired again. I started doctors all over again. First it was because my heart is still enlarged and I have to do this and that and see what happens. After 6 weeks I went back because I'm still dead tired. I had a CT scan and they found a kidney stone. Urology said the position of the stone shouldn't be causing any problems and it hasn't moved since the last CT scan I had. At that point I thought I was just going down hill. After another few months it was decided that it was that stone after all. Then that is a whole new chapter. It took a lot out of my heart. It's going to take a while for me to get to that energy status again. If none of that happened I would be feeling like you. You know what though? I'm not deteriorating and I'm still here and I'm going to get that energy again. I have to ask if you get any colds or flu like sick? I haven't gotten any type of sniffle cough or anything. I love that because I live in MN and I work with little kids. I think I have may be able to tolerate living in the Midwest...hahaha

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    Carrie Kashani
    Parapro
    ISD
    White Bear Lake MN
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  • 14.  RE: Adult congenital heart patients

    Posted 01-10-2020 08:25
    Hi Carrie,
     so great to hear from you again! It's funny you say that about being perceived as lazy...I always thought I was just a weakling! My college friends used to make fun of me because I couldn't keep up during a group jog and I was pathetic at track in Highschool... gave up after a few weeks! Now I know that it was always my heart issue and the blood not being properly oxygenated!! My heart is not enlarged from 48 years of this condition, however. In fact, my surgeon said it is rather small. I encourage you to discuss this again with your surgeon and/ or cardiologist. A little bit of information can truly alter your perception of your health. I have the suspicion that your issue is due to the kidney stone. That's a big deal by itself not to mention just on the tails of OHS!!! I look forward to getting to that 1 1/2 year mark where the surgery is truly behind us and we can truly feel the benefits of our good fortune in having this discovery before it's too late! As you said, you're still here!! This is glorious news and modern medicine is fascinating! Be easy on yourself... it's still early and you have complications. Enjoy your work with children... they are the true teachers in this world. I don't get colds or flu here in Kentucky. Just seasonal allergies. I look forward to hearing how you progress. My year anniversary is coming up...February 8. Now off to the gym to condition my small patched heart ♥️ 😊

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    Jill Farfan
    architect
    Lexington KY
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  • 15.  RE: Adult congenital heart patients

    Posted 01-11-2020 15:49
    Jill, it's nice to talk to someone with the same thing. I don't remember being out of breath when I was younger. I do remember suddenly feeling high anxiety in my 40's. I remember talking to doctors about it but anxiety meds seemed to be doing nothing. I also felt strongly about the anxiety not feeling like an emotional thing either. I was pretty frustrated. I was tired of trying different meds and just tried to chew a lot of gum and delt with it. Amazingly after surgery the anxiety calmed down so much. I loved it. I still have to take anxiety meds and a beta blocker forever but its 75% better than it was before. That's why my heart got damaged and will stay that way. If I don't take care of what I got the next step would be heart transplant. Needless to say I'm trying my best. It really helps that I don't get colds anymore. Another thing I am super greatfull for is that I don't have any foreign objects in me. Just the pig tissue to cover the hole. The valves were able to be sutured up to repair the tears. I'd like to keep it that way. God bless

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    Carrie Kashani
    Parapro
    ISD
    White Bear Lake MN
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  • 16.  RE: Adult congenital heart patients

    Posted 01-12-2020 11:35
    I don't like that I find spelling mistake and can't edit. It was Aug 2019. Hahaha

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    Carrie Kashani
    Parapro
    ISD
    White Bear Lake MN
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  • 17.  RE: Adult congenital heart patients

    Posted 01-07-2020 19:54
    I have the same thing you do. I found out at age 49. I spent my 50th in bed recovering. I had no idea I had a heart problem. I didn't get to the point of having a heart attack. My path was spotted on an x-ray. When the hole was first discovered in April of 2018 it was the size of a dime. By the time I had my surgery it was the size of a quarter and two valves were torn. The cardiologist called me a ticking time bomb. My hero is the anesthesiologist who called off the gulbladder surgery to have that spot on the x-ray. And I got to meet him later. Take care.

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    Carrie Kashani
    Parapro
    ISD
    White Bear Lake MN
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  • 18.  RE: Adult congenital heart patients

    Posted 01-03-2021 21:49
    Hi Jill,
    Thank you for posting this! I will be 48 next month and I was diagnosed with ASD in November 2020. I will be having a large hole closed in 4 days. I've been searching the internet for people to talk to about this. How is your exercise tolerance now? Do you still have shortness of breath? Did you feel different gradually or did you notice improvement immediately? What would you say is your most favorable outcome post surger? I am sorry you suffered a heart attack to find out about your condition & I'm happy that they found the ASD & you recovered. They found mine because of tachycardia & an astute cardiologist. Happy New Year! -Billie

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    Billie Hull
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  • 19.  RE: Adult congenital heart patients

    Posted 01-04-2021 03:18
    Hi Billie,
     I'm so glad you reached out to me and that my post was helpful for you. This forum is an excellent resource. To answer your question, I'm continuing to do great and I'm now almost two years post surgery which was 2/8/2019.  Still no migraine headaches!  I'm countinuing with the exercise, although the pandemic has put a damper on that since I'm no longer going to the gym but I walk/jog regularly and daily yoga. I still am taking a beta blocker (metropolol) for my fast heart rate, which helps a lot. I have anxiety and my cardiologist explained that I may possibly keep taking the beta blocker all my life. I'm ok with that now and I'm glad there is medication that can specifically help with that. OHS is tough but coming up on my 2 year anniversary now, I feel so much better. It's true what people tell you- it's worth the patient wait of recovery and cardiac rehab is an absolute must- the best thing I could have done. It helped set up my life in a way that is new to me and cardio exercise is now a huge part of my life and should be for anyone with or without a heart condition, especially those over 50 and want to live a healthy lifestyle. This whole experience has simply given me a damn good reason to take better care of my body. The hardest thing for me about surgery was the sternum pain/discomfort especially sleeping or lying down or pushing things with my arms but it does pass. If you have any questions, keep asking this forum. It's the BEST! Enjoy the down time of surgery and welcome any/all support you have available to you. And please don't hesitate to reach out to me again. All the BEST to you!!!

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    Jill Farfan
    architect
    Lexington KY
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