Ana's Guestbook

Hi Angus, thank you for your post. We do have a similar condition. No one else in my family has a bicuspid valve, but I was diagnosed when I was born. The doctors heard the murmur and monitored me every few years. Last year the echo showed moderate stenosis, so they told me to come in once a year. This January it progressed to severe so I chose to meet with a surgeon to see what my options would be. At that time I only knew about the valve and I was hoping it could be fixed with a minimally invasive procedure. The first surgeon ordered a CT and found the aneurysm. I was pretty shocked and kept feeling like a ticking time bomb. Both surgeons told me full sternotomy is my only option :/ Obviously I’m not looking forward to that so I have decided to wait as long as safely possible. My aneurysm is a bit smaller 40.17mm by 40.9mm. I’m hoping I can monitor it every 6 months and see how it goes. I did see Alex’s story. In fact I asked him what he was taking and ordered the same supplements and the tea. I’m giving the ‘Alex method’ a shot. I don’t think I can dodge the surgery for long but if I can wait a year or 2 that would be fantastic. It is very encouraging that your father’s valve lasted 15 years and he was about my age when he had it fixed the first time. Many people keep telling me that bio valves don’t last long but I think ultimately it’s luck of the draw. My procedure will be a variation of Bentall - I’ll need a valve replacement and part of the root / the surgeons disagree on whether or not the hemi arch needs replacement. In your case they might be able to repair the valve so that’s good. Mine has stenosis and regurgitation so it cannot be repaired - it must be replaced. Honestly I’m not scared of the heart surgery itself I’m just really not looking forward to the sternotomy :/ and the scar. Since there’s nothing I can do to change it I’m trying to accept it. I’m also trying not to think about it too much so I can enjoy life : )

Thank you : ) I haven't 100% decided yet. So far 3 interventional cardiologists suggested a mechanical valve, 1 surgeon suggested Ross, 1 surgeon said - definitely don't do Ross. I think ultimately I will trust my instincts and avoid it. According to the several websites, my life expectancy is about 58 anyway (20 years less than the general population) - so 1 bio valve and one TAVR should get me there.

I hate to be a pessimist here, Ana, but you are probably going to live longer than that. I don’t know the source, but assume the number is if no intervention is taken? So you could skip the surgery and live until 58. Or get a new tissue valve every 10 to 15 years and live to be 98, perhaps? Unless there are other health issues going on unrelated to your heart valve.

Wow. I don’t see much point in being compared to the general population, though. At least the Swedish study emphasizes that patient age at time of surgery is a major factor. My mother had her valve replaced in her late 70, and now, at 89, is in better shape than her children, while I, at 54, am expecting to need two more mitral valve replacements, not to mention other medical issues. I guess we have to hope for and diligently work towards the best and plan for the worst, whatever our personal idea of best vs worst is.

Actually, looking at therossprocedure.org website, the data on life expectancy is for mechanical and tissue valves, it does not include the Ross Procedure. On another tab, it says “the Ross Procedure is the only operation that has been consistently shown to restore long-term life expectancy (survival) of patients, compared to the general population.” So if life expectancy is important to you, a Ross Procedure is probably the way to go? Of course, longevity is not the only factor to consider. If you could reverse your condition like Alexander Casler, that is probably the best scenario. Whatever path you take, it’s not going to be easy, and I hope you will be at peace with your choice.