Nik's Journal

I want to thank all of you for taking the time to share empathy with me.

I'm still undecided about whether to accept my 2nd OHS in 12 months for aortic valve replacement or not and this past month has been devastating for me emotionally.

Does anyone lives with heart failure?
What is it like? Are the symptoms really debilitating?
If you don't have diabetes or any other condition, will that make the symptoms easier to live with??

Hey lovely people I need your help and life experience tips :)

In May 2022 I had ascending aorta surgery and it was a complete hell. I've been 20 days at the hospital (high temperature, fluids in the lungs as well in the heart, two additional procedures to extract it), then 7 days home and another 10 days at the hospital. Needless to say that I was both physically and psychologically broken.

Recovery was so slow that I doubted I will ever recover. Immediately on the first check up doctor noticed "trivial" aortic regurgitation. But they said there's nothing to worry about. And 20 days ago, exactly on my 1 year anniversary they said I have severe aortic regurgitation and small mitral regurgitation but surgery is required for aortic regurgitation in 90 days, which is in August. But I don't have the name of the surgeon or the exact date and time of surgery.

I live on the 4th floor and can easily go up the stairs every day. My only symptom is occasional feeling of lightheadedness. My blood pressure is around 110/53.

Since I'm from Bosnia I don't have much options - Belgrade is the only available heart centre.

Nobody talked to me and they won't because that's how they do it. And if you don't have connections there's no way you can reach any of the surgeons to talk with them. That's reality of life in this part of the world.

Ever since they told me that I will have to go through this torture again I am paralyzed. From the moment I wake up until the moment I fall asleep I'm just thinking about what decision to make and reliving the trauma of my past surgery.

I have Marfan syndrome and I feel like my life is rapidly collapsing in the past 4 years. I will very likely have another eye surgery (my 5th for now) in the near future and potentially being on Warfarin will make it more risky and complicated.

What to do?? To reject the surgery and try to live the remaining 1-2 year or to get hooked on mechanical valve and Warfarin for life.
Ticking and Warfarin are terrifying to me. My quality of life has already been on decline and with mechanical valve and warfarin I think I would actually get diagnosed with clinical depression.

So many questions on my mind... I can't even remember them.

What is like to go to the dentist while on Warfarin?
What if I for some reason only eat once on some day, will that disrupt my INR?
Can you listen to music with the ticking?
Can you eat cheese, milk, pork on Warfarin? What about oranges, cappucino?
Do you regret having mechanical valve?

Please share your experience.

I'm 31 and completely lost right now. I go through so much emotions from anger, denial to overwhelming sensation of loneliness.
I don't know what to do...