Aortic valve and root replacement

Posted by meh0001 @meh0001, Jan 4, 2022

Hello All, a year ago I, 37 year old male, very active 6 day a week weight lifting schedule and 3 day a week full court basketball player, was diagnosed with Congestive heart failure after a long misdiagnosis of a "bicuspid aortic valve" was found to have been a [unicuspidal aorta valve]. After I was able to leave my local hospital for a much bigger hospital, I was recommended to get a mechanical valve (which I was very against), We spent 3 hours discussing what could be done, although I offered to sign any paperwork stating I would take a pig a valve they refused and said mechanical is all they would do for someone in my position completely ignoring my lifestyle. I later found out after much research about the [Ross Procedure] I am very angry that they Lied (by omission) to me of other options. I also later found out they replaced my aortic arch with a prosthetic (also not discussed when talking with the surgeons and cardiologist.), further limiting my lifestyles and leading to nothing but unhappiness. I want to know what can be done, I would like the whole thing removed, I can’t take the constant clicking of the valve day in and day out. Also now knowing I have other options I do not wish to contact my old doctors. I saw they now can stem cell clone hearts, but I am not sure if I can obtain those. Anyone have any ideas of what I can do to have my old lifestyle back?

Stem cell heart link if interested: youtube.com/watch?v=UcoH7R7EkyY

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

Jennifer, Volunteer Mentor | @jenniferhunter | Jan 9, 2022

@meh0001 I appreciate that you have shared your experience and been through some extensive heart surgery. My dad was a heart patient, and I also had a friend who had a serious congenital heart defect. His heart was upside down and backwards, and all the great vessels were in the wrong place. The larger left side of the heart was sending blood to his lungs instead of his body, and the smaller right side was sending blood to the rest of his body. He had been through several heart surgeries as a child, and as an adult, he was in heart failure. He was not a candidate for a heart transplant because of the high pulmonary blood pressure that the lungs that couldn't handle if a normal heart was put in place. Medicine hasn't advanced enough to be able to clone new hearts and give them to patients in clinical practice. That would be headline news if it were possible now. I hope that will be something that the future of medicine can do.

My friend was named Pete, and he had to rely on technology to keep him alive. When his situation became critical, he was airlifted from Vanderbuilt University to the Texas Heart Institute and he became the first patient to use an internal heart pump assist with an external battery box as a permanent solution to his problem. That was designed as a temporary pump for people who were waiting for heart transplants. I was one of a lot of people who responded to fundraising efforts to help pay Pete's medical bills. With his battery box on a shoulder strap, he did something that I wouldn't have been able to do. He trained for and completed a half marathon of walking instead of running. Pete could have been angry about his situation and ask why it had to happen to him, but instead he embraced the medical advancements and technology that he received and he made his life count. He gave lectures and said, "Don't just live.... live well." He wrote a book with his wife about his journey as an experimental heart patient. He recorded a musical masterpiece to illustrate his short story called McGuire's Landing about a fictional town in the American west that was founded by an Irish immigrant. It's beautiful music and listening to it really helped me at a time when I was fearful about the spine surgery that was to be in my future. Pete was quite a musician and composer and played guitar and other stringed instruments for his own recordings and those of some other well known recording artists and I have been in his audience for many concerts, and that is the reason that we met. Pete hosted people at camps out west for fly fishing and playing guitar. Some of the concerts he played in after his recovery from the stroke and heart surgery donated all the profits toward his medical bills. That is what friends do.

I wish Pete were still here. Prior to the intervention that installed the heart pump, his heart failure caused a stroke. It was in recovering from that stroke, that he had to relearn how to play guitar again, and he did and performed again onstage in musical concerts and also backed other singers onstage in their concerts and even played backup for LeAnn Rimes who was singing on live television on Dancing with the Stars. A second stroke about 5 years later took his life. Everyone who knew Pete bought CDs, instructional DVDs and his book from his website to support his wife, Erin.

I would recommend reading his book if you are interested. https://www.petehuttlinger.com/shop#!/Joined-At-The-Heart-Book/p/54146149/category=11003218

I was terrified of my spine surgery initially, and one of my own self directed therapies toward that was to read Pete's book, "Joined at the Heart". I was having panic attacks and I started using Pete's music with deep breathing to learn to lower my blood pressure and calm me down while I worked on my emotional issues of learning how to face my fear. I have been able to call on my ability to hear music in my head and breathe deeply any time I need to get control over anxiety. The guitar camps are still held in Pete's memory.

As much as I could tell you about Pete, it is best if you hear it from him. Please listen.