14 years post-Fontan — looking for advice from other Fontan patients/adults
Hi everyone. I’m a young adult, and I’m posting here because I’d really like to hear from people who are living with a Fontan circulation.
I was born with complex congenital heart disease and had multiple surgeries as a child. My final major surgery was an extracardiac Fontan in January 2012, so it has now been about 14 years.
From what I understand, I have a single-ventricle circulation. Thankfully, I’ve been relatively stable over the years and I usually go for a cardiac check-up once a year.
I’m now at a stage in my life where I want to understand how I can take the best possible care of myself long-term while still living a normal, enjoyable life.
I’d really love to hear from people who have been living with Fontan circulation for many years.
I’d especially appreciate advice about:
- What does your normal daily life look like with Fontan circulation?
- What kind of exercise, gym or strength training do you safely do?
- How do you approach cardio and physical activity?
- Are there exercises you were specifically told to avoid?
- What does your diet look like?
- Are there foods you consciously avoid or foods you make sure to eat regularly?
- How do you stay hydrated, especially during exercise or hot weather?
- How often do you have your Fontan follow-ups and what tests do you normally get?
- Do you regularly monitor your liver because of Fontan-associated liver disease?
- How do you manage travel and long flights?
- Do you have any restrictions on your social life?
- What have your doctors told you about alcohol or smoking?
- How do you manage work, college, relationships, travel, gym and other normal parts of life?
- Have you experienced any Fontan-related complications as you've gotten older?
- What symptoms do you think Fontan patients should never ignore?
- For people who are now in their 30s, 40s, 50s or older: what do you wish you had known when you were my age?
- What lifestyle changes have genuinely helped you stay healthy?
I’m not looking to replace my cardiologist’s advice. I mainly want to learn from people who have actually lived with Fontan circulation for years.
If you're comfortable sharing your age, age at Fontan, Fontan type, and how many years post-Fontan you are, that would be really helpful.
Thanks to everyone who takes the time to share their experience.