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.
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.
Thank you! This was so helpful, so much good information.
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!
Great job, Leigh! You covered this topic thoroughly and thoughtfuly! Thank you for all that you do!
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.
This is such valuable information, Leigh. Thank you for sharing. Heart failure needs a rebrand!