Mended Hearts Open Forum

Hi there. I'm the new kid in town, though I've lived all my life, or 2/3s of it in the house I'm sitting in now.  Seems I was born with a bicuspid aortic valve. All of a sudden it seems to have gone from, yeah, no rush, to let's do this now.  Fortunately I found a very good surgeon who isn't part of the cabal at my local hospital and can get it done so much faster than having to work through the hospital "team" approach. A doctor who actually listened to me and let me make the informed decision between SAVR and TAVR. Not cutting my chest open. TAVR it is. I'm looking for a place where I can talk to others who are going through this or have been through it. Hopefully you'll share your knowledge and advice and I can share how I'm feeling and ask questions. My procedure is scheduled for 19 February. At this point I can't wait, yet I'm scared to death. 

Sarah, Good luck with your TAVR.  I was not that lucky I also had bloced ateries so I had to go the open chest route.  Not a problem for me.  I feel great.  Mended Hearts has a place on the web site called "My Heart Visit" https://www.myheartvisit.org/visit-me-now

On this site you can register to chat with somone who had TAVR and even do a zoom chat.   What are your concerns?  It's perfectly normal to be scared but if you trust your surgeon and team, it makes all the difference.  Im not sure what you mean by the cbal f the local hospital, is your surgeon part of a hospital?

Hi Sarah,

My mom had a valve replacement via TAVR about ten years ago. She did not have a BAV but had developed a problem with one of her other valves  It was amazing, really, as she was in the hospital for surgery one day and when I went to visit her the next day, I was told that she was being released and could go back home.

She's never had a problem since and though she has developed other medical issues as she ages (she's now 86 going on 87), her heart remains strong and her vitals are always good.

I am monitored for a Biscupid Aortic Valve regularly and have been told many times that if you have to have a heart issue, this is the one to have since in many cases it can be corrected easily with little interuption to your life.

Best wishes as you approach your TAVR date. Keep us posted.

Hi Sarah. Good luck with your TAVR! Mine was tricuspid that gradually fused into a bicuspid. I went along fine for years with just a murmur and watching it, had CABG in '21 and they evaluated it then with a trans-esophogeal US even, and said it wasn't bad enough to do anything with at the time of my surgery. Then over the last year or 18 months, started noticing more shortness of breath with exertion, and the US showed worsening stenosis. I felt a lot of pressure in my upper chest and neck with exertion as well. I am so glad TAVR is available. My cardiologist was the one who did it, in concert with a cardiac surgeon, as is usually the case. She was all for not opening my chest again, but the surgeon tried to talk me into a SAVR I was 69 when I had mine on Oct 13th, and everything has been fine since. I am going through a cardiac rehab program, which your doc will hopefully recommend, to increase my endurance. Yes, they are finding that it could start to go bad after 8-10 years because of the compression wrapping it around the balloon for insertion, but the technology is better and better, and if I'm still around when I'm almost 80, it will be even better. And they have already been doing TAVR within TAVR for years. So I opted to definitely go for the TAVR rather than a 2nd open heart procedure. Went for a long walk in the hall the night of my procedure, was only in the hospital overnight. At my post-op visit a month and a half later, she was very pleased with everything. 

It is very understandable to be nervous. It's still a major procedure, and I, being a retired nurse, was scared to death of waking up with a stroke or a pacemaker. But everything was fine and those complications are quite rare. I was so relieved when I woke up from the sedation and they had me doing neuro checks--and everything was perfect! Laying flat for 6 hours is a bitch, but it is so much better than having your chest opened. 

Keep us posted on here how you are doing, and don't hesitated to ask questions--especially to your doctor, and on here as well. It always helps to talk to someone who has been there. Just do what they tell you, no lifting for a couple of weeks, give those groin sites plenty of time to heal up.They have this down to a fine science.