Thanks for writing this article Leigh. It's important to raise awareness and share this information. My Dad, a consultant geriatrician suffered his first heart attack when he was in his late forties, then had a quintuple bypass and controlled his heart failure with various medications. I wanted to offer that over time, compounding health conditions can destabilise heart failure, so it's essential to keep monitoring and recalibrating the medications. Dad had rheumatoid arthritis and later bladder cancer. The latter diagnosis had a significant impact on his heart failure.
When my son's cardiologist told us he was in heart failure (due to a CHD) around age 1, I must admit that I pretty much freaked out. You're very right that the term "heart failure" is extremely scary. When I have "tire failure" it means the tire is trashed and I need to replace it. (It sounds like) there's no real recovery from it.
The thing that really helped me put it in perspective was when my (French) wife explained to me that the French term for heart failure is "cardiac insufficiency." It has the same meaning (using the English term, the heart is failing to do its job) but it is MUCH less scary sounding.
Thank you for this wonderful information on Heart Failure. I have Epstein's Anomaly & ASD that was fixed with two heart surgeries, left ventricle was replaced with a Pig valve. I have been on diuretics for years, which helps my heart failure most of the time, as well as watching my salt intake. And I have been in A-permanant A-Fib for at least 5 years. I have been hospitalized a few time for heart failure, the last time after a 6 hour (due to excessive scaring in my heart) surgery to upgrade may pacemaker/defibrillator to an resynchronization one.. I'll be 76 in September and think I deal with it all fairly well, just wish I had more energy, and didn't get out of breath so often, but am grateful to my doctors, husband and family who keep me going. Thank you again for the information. I heard about you on the ACHD webinar on heart failure.
I’m just stumbling upon this article and newsletter. I’m new to the ACHD world. As in my CHD has been in “remission “ or so I thought since I had surgery at age 2 when my VSD was repaired. I was never again followed by a cardiologist. That is until I found myself in heart failure at age 32 while pregnant. I’m 34 now and now that I’m 17 months into parenthood some of the fog is starting to lift and I’m starting to look more into ACHD and HF. I am uncovering a world of people I didn’t now exist. I didn’t even know that I am considered to have ACHD. Reading this article validates times in my life when so was a competitive athlete and felt like I was hitting a wall that felt different from hitting my max output. Blacking out from exercise wasn’t normal, who knew? Not me, it was the norm. How would I know otherwise? I look forward to diving into your past work to feel further connection and validation. Thank you.
Great artical i have this and sometimes with me being young i feel so alone and still dont understand even tho iv had pacemaker 4 year and it necer gets easy or anxity
Great article, Leigh! My son was in heart failure for approximately 19 years, from age five to 24 (he is now 40). So no, not a death sentence, but yes, important to treat!
As a nurse practitioner with an adult child with CHD associated heart failure this article is spot on. Excellent job and thank you for your work. I look forward to reading more!
You have done it again with this article. That has been a dreaded term in our CHD family, but we learned too it could be managed. Yes. Let’s work on rebranding the term and increasing awareness with articles such as this.
Thanks for writing this article Leigh. It's important to raise awareness and share this information. My Dad, a consultant geriatrician suffered his first heart attack when he was in his late forties, then had a quintuple bypass and controlled his heart failure with various medications. I wanted to offer that over time, compounding health conditions can destabilise heart failure, so it's essential to keep monitoring and recalibrating the medications. Dad had rheumatoid arthritis and later bladder cancer. The latter diagnosis had a significant impact on his heart failure.
When my son's cardiologist told us he was in heart failure (due to a CHD) around age 1, I must admit that I pretty much freaked out. You're very right that the term "heart failure" is extremely scary. When I have "tire failure" it means the tire is trashed and I need to replace it. (It sounds like) there's no real recovery from it.
The thing that really helped me put it in perspective was when my (French) wife explained to me that the French term for heart failure is "cardiac insufficiency." It has the same meaning (using the English term, the heart is failing to do its job) but it is MUCH less scary sounding.
Thank you for this wonderful information on Heart Failure. I have Epstein's Anomaly & ASD that was fixed with two heart surgeries, left ventricle was replaced with a Pig valve. I have been on diuretics for years, which helps my heart failure most of the time, as well as watching my salt intake. And I have been in A-permanant A-Fib for at least 5 years. I have been hospitalized a few time for heart failure, the last time after a 6 hour (due to excessive scaring in my heart) surgery to upgrade may pacemaker/defibrillator to an resynchronization one.. I'll be 76 in September and think I deal with it all fairly well, just wish I had more energy, and didn't get out of breath so often, but am grateful to my doctors, husband and family who keep me going. Thank you again for the information. I heard about you on the ACHD webinar on heart failure.
I’m just stumbling upon this article and newsletter. I’m new to the ACHD world. As in my CHD has been in “remission “ or so I thought since I had surgery at age 2 when my VSD was repaired. I was never again followed by a cardiologist. That is until I found myself in heart failure at age 32 while pregnant. I’m 34 now and now that I’m 17 months into parenthood some of the fog is starting to lift and I’m starting to look more into ACHD and HF. I am uncovering a world of people I didn’t now exist. I didn’t even know that I am considered to have ACHD. Reading this article validates times in my life when so was a competitive athlete and felt like I was hitting a wall that felt different from hitting my max output. Blacking out from exercise wasn’t normal, who knew? Not me, it was the norm. How would I know otherwise? I look forward to diving into your past work to feel further connection and validation. Thank you.
Welcome, Amanda! Thank you for sharing your story. It's stories like these that make all of this work worth it. ❤️
Thank you! This was so helpful, so much good information.
Glad to hear it!
Great artical i have this and sometimes with me being young i feel so alone and still dont understand even tho iv had pacemaker 4 year and it necer gets easy or anxity
That sounds tough. ❤️
Great article, Leigh! My son was in heart failure for approximately 19 years, from age five to 24 (he is now 40). So no, not a death sentence, but yes, important to treat!
Thank you! ❤️
As a nurse practitioner with an adult child with CHD associated heart failure this article is spot on. Excellent job and thank you for your work. I look forward to reading more!
So glad to hear it. Thanks, Karen!
Great job, Leigh! You covered this topic thoroughly and thoughtfuly! Thank you for all that you do!
Thank you, Lena! I hope it is helpful for people.
You have done it again with this article. That has been a dreaded term in our CHD family, but we learned too it could be managed. Yes. Let’s work on rebranding the term and increasing awareness with articles such as this.
Yes! The term is so off-putting, I'm sure it discourages people from asking about it and getting help.
This is such valuable information, Leigh. Thank you for sharing. Heart failure needs a rebrand!
No kidding!