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!

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Daneen Douglas
Mesa, Arizona
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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

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

Victor,

Thank you so much for your message. I always knew I had a bicuspid valve due to my mom's condition.  She has had innumerable heart surgeries, ablations, and a v node pace maker.  She's even in Cleveland clinic textbooks from the cutting edge surgery she had to repair her valve at 14 in 1960.  she's still alive and kicking, lol!  

I just met with the surgeon this past Wednesday.  I definitely researched before and he was so thorough he answered 99% of my questions during his explanations, ha! I will be getting the Freestyle aortic root/valve replacement along with my aortic resection/graft if my root is dilated, which they suspect.  Otherwise it may be the Epic Plus which is great for a TAVR later on.  They said the Freestyle has lasted 19 years so far.  So that's promising.  I won't be on blood thinners but we didn't  talk about rehab.  So I will definitely be mentioning this to him in March when I get my heart cath closer to my surgery date.   

I am hoping I will be feeling better than ever!  

This is an awesome place to find people who have overcome so much. 

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

Original Message:
Sent: 11-27-2023 06:16
From: Victor Fabry
Subject: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

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
------------------------------

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

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Ira Reid
Hoboken NJ
------------------------------

Original Message:
Sent: 11-27-2023 06:16
From: Victor Fabry
Subject: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

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
------------------------------

Hi Ira,

Thanks so much for your message.  That's great news about tge latest blood thinners.  I will be having tissue replacements so I won't be needing blood thinners myself.  Glad to hear you are recovered 6 years.  I wish you well and very much appreciate them information.  

Daneen

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

Original Message:
Sent: 11-28-2023 06:43
From: Ira Reid
Subject: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

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

------------------------------
Ira Reid
Hoboken NJ
------------------------------


Original Message:
Sent: 11-27-2023 06:16
From: Victor Fabry
Subject: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

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

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 

------------------------------
Ed M
------------------------------

Ed,

 Thank you so much for your message.  I have watched many videos on heartvalvesurgery.com and am familiar with the founder having the Ross procedure.   I'm not confident I want to pursue this due to the fact that it's even more involved than what I'm facing and much more specialized.  I think it is an amazing procedure, though and have briefly considered it.  I'm not wanting to do more invasive surgery than what will already be required.  

Thank you so much for your concern and support, 

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

Original Message:
Sent: 11-27-2023 10:50
From: Ed M
Subject: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

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 

------------------------------
Ed M
------------------------------

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
------------------------------

Hi Kat!

That must have been such a shock! I’m glad you are on the other side of your surgery. I would love to talk with you further about your experience. 

Thank you so much for reaching out!

Daneen

Sent from my iPad

Original Message:
Sent: 11/28/2023 3:20:00 AM
From: Kat Edwards
Subject: RE: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

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
------------------------------

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

------------------------------
Dmitrii Markitanov
------------------------------

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 

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

Original Message:
Sent: 12-02-2023 22:26
From: Dmitrii Markitanov
Subject: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

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

------------------------------
Dmitrii Markitanov
------------------------------

Vic,

That is great information to know.  It's amazing how our  bodies regenerate tissue to help heal and strengthen.  That makes me feel more confident in the procedure.  

Thank you,

Daneen

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

Original Message:
Sent: 12-03-2023 07:26
From: Victor Fabry
Subject: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

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 

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


Original Message:
Sent: 12-02-2023 22:26
From: Dmitrii Markitanov
Subject: Upcoming open heart surgery to have aortic valve/root replacement and aortic graft in May, 2024

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

------------------------------
Dmitrii Markitanov