Mended Hearts Open Forum

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!

Daneen,
You're wise to ask other heart patients about their experiences. I received a new aortic valve in 2007 as part of aortic aneurysm surgery. Bicuspid valves are not common but a defect that surfaces in some woman in their 40's. The latest surgical aortic valves will last over 15 years and can be replaced, when required with a TAVR valve, without additional surgery. Prepare your questions about the procedure for your consult with your heart surgeon.  Ask about the types and makers of surgical aortic valves and which they recommend for you. Also ask about post surgery recovery, blood thinners and cardiac rehab.  You wil feel much better after your procedure. 
Good luck,
Vic

------------------------------
Victor Fabry, Founder
Healed Hearts of New Jersey
Short Hills, New Jersey
fvfabry@gmail.com

Original Message:
Sent: 11-26-2023 21:47
From: Daneen Douglas
Subject: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!

------------------------------
Daneen Douglas
Mesa, Arizona
------------------------------

Daneen,
You're wise to ask other heart patients about their experiences. I received a new aortic valve in 2007 as part of aortic aneurysm surgery. Bicuspid valves are not common but a defect that surfaces in some woman in their 40's. The latest surgical aortic valves will last over 15 years and can be replaced, when required with a TAVR valve, without additional surgery. Prepare your questions about the procedure for your consult with your heart surgeon.  Ask about the types and makers of surgical aortic valves and which they recommend for you. Also ask about post surgery recovery, blood thinners and cardiac rehab.  You wil feel much better after your procedure. 
Good luck,
Vic

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!

Hi Daneen,

Best of luck with your surgery.  Did not have a valve issue but I did have occasion to take a blood thinner after my coronary artery bypass surgery six years ago.  I recommend that you find out from your cardiologist whether you can take one of the newer blood thinners such as Eliquis, rather than Coumadin/Warfarin.  They both work fine but Coumadin requires constant blood level monitoring and avoiding some normally very healthy greens, while Eliquis does not require any blood monitoring or dietary issues and poses less of a bleeding risk.

Please keep us posted.

Ira

Daneen,
You're wise to ask other heart patients about their experiences. I received a new aortic valve in 2007 as part of aortic aneurysm surgery. Bicuspid valves are not common but a defect that surfaces in some woman in their 40's. The latest surgical aortic valves will last over 15 years and can be replaced, when required with a TAVR valve, without additional surgery. Prepare your questions about the procedure for your consult with your heart surgeon.  Ask about the types and makers of surgical aortic valves and which they recommend for you. Also ask about post surgery recovery, blood thinners and cardiac rehab.  You wil feel much better after your procedure. 
Good luck,
Vic

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!

Daneen,

I don't have what you have, but I know several individuals who have dealt with this.  It's not uncommon.  Many folks in your situation are never told about the Ross Procedure.  I recommend you look into this.  To lend some perspective, Arnold Schwarzenegger had the Ross Procedure many years ago and Adam Pick, founder of heartvalvesurgery.com also had this done.  To be clear, I am not certain if the Ross Procedure is done for folks in your age group.  What does it have to offer?  It is usually a life-long solution with no future surgeries, no coumadin, no mechanical valves.  There are considerations.  Many cities do not offer this procedure.  In those cases, there is a real NIH (not-invented-here) attitude about the Ross, so it may be difficult to get good information from those who don't offer it.  To get accurate information, you may need to have a consult with a surgeon who does a lot of these.  The operation is involved so if its in your future you should only consider specialists who perform the Ross on a regular bases.  I know of a few doctors who do the Ross procedure and I can pass these on to you should you wish to persue this.  In this case contact me privately and I'd be happy to help. 

Best of luck in dealing with your bi-cuspid valve.

Ed 

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!

Hello Daneen,

I am sorry to hear of your need for valve surgery.  I was also born with a bicuspid aortic valve that was only diagnosed by a cardiologist in Oct 2020 (with an 85% regurgitation rate).   I had open heart surgery in August 2021 at Cedars Sinai with a bovine aortic valve and subsequently completed an extensive  cardiac rehab program.  I would be happy to share any information regarding my pre and post op process.  Wish you the best as you move through this journey.....

kat

kemile.cotter@gmail.com

------------------------------
Kat Edwards
CA
------------------------------

Original Message:
Sent: 11-26-2023 21:47
From: Daneen Douglas
Subject: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!

------------------------------
Daneen Douglas
Mesa, Arizona
------------------------------

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!

Daneen,

I also was born with bicuspid aortic valve and had 50 mm ascending aortic aneurysm.

Surgery was done on Northwestern Memorial Hospital in Chicago on August 31st 2023.

I had two choices: On-X valve or bicuspid valve repair. I chose repair because instead of warfarin I have to take 80 mg aspirin.

There was  some fear before surgery, but I do not remember anything about it, I lost consciousness before I was rolled into the operation room. 

I had complications from being on artificial circulation. MRI showed very small micro stroke in cerebellum. Luckily there is no neurological deficit.

However I had frequent visual migraines for the first 2 months. 

3 months later I feel much better, shortness of breath was gone.

Artificial aorta has one side effect. There is a loud  audible sound of heartbeat, especially during deep breathing in.

It took me 3 years to agree for the surgery. I was hoping that aneurysm would stop growing, but it only  grew larger. I had shortness of breath and pressure inside my chest, especially when l was lifting heavy items.  

Surgeon told me that after several weeks of surgery the scar tissue starts to grow into the small pores of articial aorta  and that is how this connection becomes much stronger and more durable.

Regards,

Dmitrii

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!

Dimitri,

An excellent account of your experience. I asked my heart surgeon the same question about the Dacron aortic sleeve used to repair my ascending aortic aneurysm. He said the accretion or gradual growth of aortic tissue occurs with in a month to strengthen and reline the inside of the artificial aorta.

Vic 

Daneen,

I also was born with bicuspid aortic valve and had 50 mm ascending aortic aneurysm.

Surgery was done on Northwestern Memorial Hospital in Chicago on August 31st 2023.

I had two choices: On-X valve or bicuspid valve repair. I chose repair because instead of warfarin I have to take 80 mg aspirin.

There was  some fear before surgery, but I do not remember anything about it, I lost consciousness before I was rolled into the operation room. 

I had complications from being on artificial circulation. MRI showed very small micro stroke in cerebellum. Luckily there is no neurological deficit.

However I had frequent visual migraines for the first 2 months. 

3 months later I feel much better, shortness of breath was gone.

Artificial aorta has one side effect. There is a loud  audible sound of heartbeat, especially during deep breathing in.

It took me 3 years to agree for the surgery. I was hoping that aneurysm would stop growing, but it only  grew larger. I had shortness of breath and pressure inside my chest, especially when l was lifting heavy items.  

Surgeon told me that after several weeks of surgery the scar tissue starts to grow into the small pores of articial aorta  and that is how this connection becomes much stronger and more durable.

Regards,

Dmitrii

Does anyone have a similar condition?  I would love to hear your story.

 I was born with a bicuspid aortic valve.  I'm now 52 years old and my condition has progressed and is now severe.  My cardiologist sent me to a specialized surgeon who also agreed it was time for surgery.  

My mother had a bicuspid valve too, but she had rheumatic fever, which destroyed her valve at an early age.  I have grown up around heart issues my mother has dealt with all of her life and is still dealing with 60 years later.  

I would love to connect with people who have similar stories.

thank you and I look forward to talking with you!