I have a serious chronic heart condition, and based on discussions about my condition, I may be looking at a life expectancy in the range of roughly 5–10 years if things progress and surgery is not possible or not done.

I know nobody can predict an exact number of years, and my condition is still relatively stable at the moment. But knowing that my future may be more limited than I once expected has changed the way I think about life.

I would really like to hear from people who have been given a limited or uncertain prognosis because of any serious illness.

How do you live with that knowledge day to day?

Did you change the way you work, travel, spend money, make relationships, or plan your future?

Do you think about the prognosis often, or did it eventually become something in the background?

How do you balance enjoying the present with still planning for the future?

I’m mainly looking to connect with people who understand what it is like to live with this kind of uncertainty.

Hi everyone,

I’m a 50-year-old man with chronic calcified constrictive pericarditis. I’m trying to connect with people who have had a similar course, especially those who were monitored for years instead of having surgery immediately.

My constrictive physiology was confirmed years ago, and later imaging continued to show typical findings such as pericardial thickening/calcification, septal bounce, biatrial enlargement and impaired filling.

My condition seems to have progressed slowly over many years. I was evaluated at Cleveland Clinic, and at that time they recommended monitoring rather than surgery because they felt the surgical risk was greater than the expected benefit at that stage.

I am still working and generally functioning normally, but I do have reduced exercise tolerance. I usually notice shortness of breath mainly with longer walking, stairs or sudden intense effort, not at rest.

I would really like to hear from people with calcified constrictive pericarditis or knows people wıth such condıtıons, especially if :

• Were advised to monitor rather than have surgery
• Have lived with it for many years
• Started getting ankle swelling or fluid retention later in the disease
• Use Lasix only when needed
• Eventually had a pericardiectomy after years of observation

For those who had pericardiectomy, how was recovery and would you make the same decision again?

I understand everyone’s case is different and I’m not looking for medical advice — mainly real-life experiences from people living with the same rare condition.