Getting Ready For 2nd AVR - 29 Years Old

[John-3919]

Hello All,

I just wanted to create a post to put myself out there on the forum to share my experience, and express my appreciation for all those active members who have helped others with their perspectives, stories, and information.

A bit about me: I had an Aortic Valve repair for a unicuspid aortic aortic valve with severe regurgitation at Cleveland Clinic in 2014 at the age of 24. They did the best they could, but ultimately the repair didn't take fully and the valve returned to a moderate/severe regurgitation. I avoided re-operation for a few years, but at my yearly post-echo checkup with my cardiologist he recommended that I get re-operated on in the next 3-6 months. I went for a second opinion at Northwestern Memorial and they agreed that I needed to replace the valve.

Immediately after the news I began researching which valve replacement option was best (tissue vs. mechanical). I certainly was biased toward wanting a tissue valve with the notion of getting TAVR as a follow up to its inevitable degeneration. The Doctor at Northwestern explained a few things that made this idea clear that it wasn't a good one. First, a tissue valve in a person of my age would very likely fail in under 10 years. At which point they would put in a TAVR valve which also doesn't have a proven long term life, so with each subsequent valve degeneration they would have to put in progressively smaller TAVR valves creating a Russian nesting doll type scenario, all the while shrinking the passage through the aortic valve smaller and smaller. Until ultimately, they would have to go in with another open heart procedure and pull that whole mess out and replace the valve again. (He had clearly explained this situation to a lot of people who thought it was a viable solution for younger patients). Clearly, in my situation, that was far from an ideal treatment plan. He said the best choice was a mechanical valve. I was apprehensive about a mechanical valve given everything I had heard about anti-coagulants, but I've since come to realize that my concerns with ACT appear largely unfounded.

After finding this forum and hearing the first hand experiences of people living with mechanical valves, and how little anti-coagulation drugs effect their day to day lives has really brought me around to getting a mechanical valve. Also, seeing members who have lived with mechanical valves for over 50 years (the cardiologist at Northwestern mentioned that he had multiple patients with 50+ year mechanical valves as well) has been truly inspiring, and has given me the perspective that this is truly the best way forward. I was a big runner in the last few years before I started experiencing various symptoms in the last few months which caused me to stop, but I'm extremely excited to get back to running and exercising - and living a normal life again!

I still have a few tests to go through, and have yet to finalize my meeting with the surgeon, but it's looking like early to mid September will be my operation date (fingers crossed).

Thank you to everyone involved with the forum. It has really given me solace that I'm making a good choice for me, and that I have lots to look forward to!


Best,


John

 

[tom in MO]

Good luck on your new adventure. Thanks for providing a clear explanation of the risks of TAVR for a patient who is not in the "high-risk group" that it was initially designed for. Godspeed!

 

[Protimenow]

I'm glad that we our experiences were able to help you overcome the fears and lies about how being on an anticoagulant will ruin your life. It won't.

And, personally, I'm glad that, at your age, you've chosen a type of valve that will probably last you the rest of your life until, at 125 years old, you trip on your cat and break a hip (or something).

Please keep us posted on your surgery. Feel free to ask any questions -- a lot of us have a LOT of experience with this surgery and anticoagulation (some have had to get more than one AVR), and we're here to support you. (I know, I can't really speak for this group, but I know them - we'll be there for you).

 

[Keithl]

I am 58 and still went mechanical because I wanted a once and done even though my cardio and surgeon were leaning tissue. Mine was 15 weeks ago and anti-coagulation and self test has been a piece of cake. Good luck!

 

[Protimenow]

Above a certain age, they seem to push tissue over mechanical. As I understand it, they figure 'he's old, he won't die from a failed tissue valve' - but I'm not sure about this. As we age, tissue valves seem to last longer than when put into a youmg person.

Perhaps it's easier for the surgeon to place a tissue valve in an older person than it is for a prosthetic. I don't know.

If I had to do it again today, I don't think I'd want a tissue valve AT ANY AGE because the cloud of valve failure and TAVI or replacement would be hanging over my head. I don't want to be thinking 'hey, I won't live another ten years, so why not get a tissue valve?'

Keithl, I don't advise people about tissue versus mechanical, but, since you've already done it, I think you made the right choice.

 

[Keithl]

I just stated my choice and reason, many people choose tissue as they are afraid of warfarin. I spoke to people that had mechanical values 20 years and weighed what was important to me, others that are very active and afraid of bleeding might pick tissue. The good news we each have our choices, there is no one single right answer.

 

[dick0236]

Hi John and welcome. I am one of those that have lived more than 50 years on one mechanical valve. In fact, in a week it'll be 52 years. I was 31 when I got it and would do it today if I was 31 again. If and when they come up with the "magic bullet" in the future you can take advantage of it then.........I'm still waiting. This is probably the best forum for a new valve patient. We've all been there and usually can answer your questions and take some of the mystery out of OHS (Open Heart Surgery)

Dick

 

[Protimenow]

I was 41 years old when I got my mechanical valve. I didn't even consider a tissue valve at the time. I knew that I would have to be anticoagulated for the rest of my life, I knew that the valve would click, but I saw it as my only choice if I didn't want to go through another open heart surgery a decade or so down the line.
I've never regretted my decision.

 

[cewilk]

Good luck to you John! I was in a similar situation as you 4.5 years ago (age 26) as I was getting ready to have my second OHS. First OHS I had a Ross procedure and the second time around I was really struggling with coming to terms with choosing a mechanical and having to be on warfarin. I ultimately chose the mechanical and I am so glad I did. The proven longevity is what sold me and doing whatever possible to hopefully avoid a third OHS in my lifetime. Warfarin therapy has had very little impact on my lifestyle and hobbies. I am very glad I chose the mechanical, but I do remember 4.5-5 years ago how difficult of a decision it was for me at the time.

 

[jmo3]

Good call, John. I am 49 and had my ON-X valve put in 3 years ago with no regrets. Best of luck to you with the surgery!

 

[LoveMyBraveHeart]

Good luck, John! As a recent member myself (fiance just had his second OHS/AVR yesterday...all in the span of 8 months), this forum has been a godsend. The people are so forthcoming with gritty recovery details and answer questions a lot of medical professionals dont know the answers to because they havent experienced the situation for themselves. They encourage me so much. Soon, you'll be able to look back at the whole thing as a distant memory. Btw, we chose the mechanical valve yesterday, it replaced a tissue valve which they discovered during surgery was faulty. I am anticipating some hurdles we still have to jump, but we are very content with this decision, partially because of the people on this forum. Sending all of the positivity your way, please keep us updated on your progress pre and post op!!

 

[John-3919]

Thanks, all! I will be sure to update when I get more news pre-op and afterwards.

 

[carolinemc]

Hello All,

I just wanted to create a post to put myself out there on the forum to share my experience, and express my appreciation for all those active members who have helped others with their perspectives, stories, and information.

A bit about me: I had an Aortic Valve repair for a unicuspid aortic aortic valve with severe regurgitation at Cleveland Clinic in 2014 at the age of 24. They did the best they could, but ultimately the repair didn't take fully and the valve returned to a moderate/severe regurgitation. I avoided re-operation for a few years, but at my yearly post-echo checkup with my cardiologist he recommended that I get re-operated on in the next 3-6 months. I went for a second opinion at Northwestern Memorial and they agreed that I needed to replace the valve.

Immediately after the news I began researching which valve replacement option was best (tissue vs. mechanical). I certainly was biased toward wanting a tissue valve with the notion of getting TAVR as a follow up to its inevitable degeneration. The Doctor at Northwestern explained a few things that made this idea clear that it wasn't a good one. First, a tissue valve in a person of my age would very likely fail in under 10 years. At which point they would put in a TAVR valve which also doesn't have a proven long term life, so with each subsequent valve degeneration they would have to put in progressively smaller TAVR valves creating a Russian nesting doll type scenario, all the while shrinking the passage through the aortic valve smaller and smaller. Until ultimately, they would have to go in with another open heart procedure and pull that whole mess out and replace the valve again. (He had clearly explained this situation to a lot of people who thought it was a viable solution for younger patients). Clearly, in my situation, that was far from an ideal treatment plan. He said the best choice was a mechanical valve. I was apprehensive about a mechanical valve given everything I had heard about anti-coagulants, but I've since come to realize that my concerns with ACT appear largely unfounded.

After finding this forum and hearing the first hand experiences of people living with mechanical valves, and how little anti-coagulation drugs effect their day to day lives has really brought me around to getting a mechanical valve. Also, seeing members who have lived with mechanical valves for over 50 years (the cardiologist at Northwestern mentioned that he had multiple patients with 50+ year mechanical valves as well) has been truly inspiring, and has given me the perspective that this is truly the best way forward. I was a big runner in the last few years before I started experiencing various symptoms in the last few months which caused me to stop, but I'm extremely excited to get back to running and exercising - and living a normal life again!

I still have a few tests to go through, and have yet to finalize my meeting with the surgeon, but it's looking like early to mid September will be my operation date (fingers crossed).

Thank you to everyone involved with the forum. It has really given me solace that I'm making a good choice for me, and that I have lots to look forward to!


Best,


John

Welcome to the board, we are all here to help you with advice and answers to any questions you might have. Repairs are never totally guaranteed. But you are so lucky to be young and healthy otherwise. You will be fine and do fine. Hugs for today.

 

[John-3919]

Met with my surgeon at Northwestern and officially got my surgery date: November 8th.

After looking at my MRI it appears I have an aneurysm at my aortic root, and mild dilation of my ascending aorta.

The surgeon is going to do a Bentall procedure (valve, root, and ascending aorta replacement). He's planning to use the On-x with Vascutek graft.

He said that while my ascending aorta isn't at the size to require intervention, he is going to replace it anyways to hopefully avoid another surgery down the road - which I'm absolutely fine with.

While discussing the valve and anti-coagulation, he was quite excited about the upcoming trials for mechanical heart valve patients using anti-coagulants that don't require INR monitoring. The drugs are targeting Factor Xa (pronounced "Ten"a). I could't speak to how it works, and I haven't had much time to research it, but he said the trial paperwork has already come across his desk.

Personally, for the time being, I'm much more comfortable sticking with Warfarin and home monitoring. I'll let someone else be the guinea pig.


Now I just have to bide my time for the next two months waiting for surgery!

 

[Protimenow]

I haven't heard about a new anticoagulant that targets Xa. I know that there's a lot of work to find an alternative to Warfarin.

If the FDA is still relatively independent, and effective, it'll take many years to finally bring this to market. If/when it gets clearance for use in humans with mechanical valves or other indications requiring anticoagulation, it will undoubtedly be EXTREMELY expensive.

In addition to eliminating the need for warfarin, I hope that it will be a drug that can be easily and inexpensively reversed -- I wouldn't want to be taking a $10 pill and have to pay $20,000 to reverse the effects in an emergency.

Although the marketing machine will paint the 'horrors' of warfarin and managing the anticoagulation, it may still be a bit difficult to challenge a medication that costs far less than $1.00 a day, can be easily managed, requires a simple finger stick to test its effects, and whose effect can be easily and inexpensively reversed.

Good luck to you, John-3919

 

[Bradley White]

Met with my surgeon at Northwestern and officially got my surgery date: November 8th.

After looking at my MRI it appears I have an aneurysm at my aortic root, and mild dilation of my ascending aorta.

The surgeon is going to do a Bentall procedure (valve, root, and ascending aorta replacement). He's planning to use the On-x with Vascutek graft.

He said that while my ascending aorta isn't at the size to require intervention, he is going to replace it anyways to hopefully avoid another surgery down the road - which I'm absolutely fine with.

While discussing the valve and anti-coagulation, he was quite excited about the upcoming trials for mechanical heart valve patients using anti-coagulants that don't require INR monitoring. The drugs are targeting Factor Xa (pronounced "Ten"a). I could't speak to how it works, and I haven't had much time to research it, but he said the trial paperwork has already come across his desk.

Personally, for the time being, I'm much more comfortable sticking with Warfarin and home monitoring. I'll let someone else be the guinea pig.


Now I just have to bide my time for the next two months waiting for surgery!

John - sounds like we're going to be having the exact same surgery a little more than a month apart. Good luck!

My doc told me the same thing about one of the novel oral anti-coags (NOAC) that has already been approved for afib going into a large clinical trial for mechanical heart valves. The first NOAC they tried a few years back performed much worse than warfarin, so fingers crossed this new one does well.

He complained that the marketing teams for these NOACs view a drug effectiveness assay (like INR) as a bug and not a feature. Whereas he views an assay as critical to getting dosing right early on for patients of different weights etc. Apparently there are assays for many of the NAOCs but they aren't commercializing them for marketing purposes.

 

[Ladybug]

Hello All,

I just wanted to create a post to put myself out there on the forum to share my experience, and express my appreciation for all those active members who have helped others with their perspectives, stories, and information.

A bit about me: I had an Aortic Valve repair for a unicuspid aortic aortic valve with severe regurgitation at Cleveland Clinic in 2014 at the age of 24. They did the best they could, but ultimately the repair didn't take fully and the valve returned to a moderate/severe regurgitation. I avoided re-operation for a few years, but at my yearly post-echo checkup with my cardiologist he recommended that I get re-operated on in the next 3-6 months. I went for a second opinion at Northwestern Memorial and they agreed that I needed to replace the valve.

Immediately after the news I began researching which valve replacement option was best (tissue vs. mechanical). I certainly was biased toward wanting a tissue valve with the notion of getting TAVR as a follow up to its inevitable degeneration. The Doctor at Northwestern explained a few things that made this idea clear that it wasn't a good one. First, a tissue valve in a person of my age would very likely fail in under 10 years. At which point they would put in a TAVR valve which also doesn't have a proven long term life, so with each subsequent valve degeneration they would have to put in progressively smaller TAVR valves creating a Russian nesting doll type scenario, all the while shrinking the passage through the aortic valve smaller and smaller. Until ultimately, they would have to go in with another open heart procedure and pull that whole mess out and replace the valve again. (He had clearly explained this situation to a lot of people who thought it was a viable solution for younger patients). Clearly, in my situation, that was far from an ideal treatment plan. He said the best choice was a mechanical valve. I was apprehensive about a mechanical valve given everything I had heard about anti-coagulants, but I've since come to realize that my concerns with ACT appear largely unfounded.

After finding this forum and hearing the first hand experiences of people living with mechanical valves, and how little anti-coagulation drugs effect their day to day lives has really brought me around to getting a mechanical valve. Also, seeing members who have lived with mechanical valves for over 50 years (the cardiologist at Northwestern mentioned that he had multiple patients with 50+ year mechanical valves as well) has been truly inspiring, and has given me the perspective that this is truly the best way forward. I was a big runner in the last few years before I started experiencing various symptoms in the last few months which caused me to stop, but I'm extremely excited to get back to running and exercising - and living a normal life again!

I still have a few tests to go through, and have yet to finalize my meeting with the surgeon, but it's looking like early to mid September will be my operation date (fingers crossed).

Thank you to everyone involved with the forum. It has really given me solace that I'm making a good choice for me, and that I have lots to look forward to!


Best,


John

John,

You’re an excellent communicator. I can “see” what you’re going through. I think it sounds like you’ve gotten excellent advice. I’m wishing you the best. Please keep us updated.
I’m having TAVR in two days, here in Atlanta. It helps me to focus on how lucky I am to be needing this in 2019, rather than the 1950’s when my grandmother died of her third heart attack at age 57.
I am especially wishing you well because you are young to be on this journey.

Bless you...
Ladybug (otherwise known as Granny Meg)

 

[pellicle]

Hey John
Sorry I'm late to the party.

Best Wishes on a unremarkable recovery

 

[Protimenow]

Met with my surgeon at Northwestern and officially got my surgery date: November 8th.

After looking at my MRI it appears I have an aneurysm at my aortic root, and mild dilation of my ascending aorta.

The surgeon is going to do a Bentall procedure (valve, root, and ascending aorta replacement). He's planning to use the On-x with Vascutek graft.

He said that while my ascending aorta isn't at the size to require intervention, he is going to replace it anyways to hopefully avoid another surgery down the road - which I'm absolutely fine with.

While discussing the valve and anti-coagulation, he was quite excited about the upcoming trials for mechanical heart valve patients using anti-coagulants that don't require INR monitoring. The drugs are targeting Factor Xa (pronounced "Ten"a). I could't speak to how it works, and I haven't had much time to research it, but he said the trial paperwork has already come across his desk.

Personally, for the time being, I'm much more comfortable sticking with Warfarin and home monitoring. I'll let someone else be the guinea pig.


Now I just have to bide my time for the next two months waiting for surgery!

Bidin' My Time - from the Gershwin show Girl Crazy. It's amazing how phrases stick around for a LONG time. (I wasn't allowed to upload the song).

 

[pellicle]

Bidin' My Time - from the Gershwin show Girl Crazy. It's amazing how phrases stick around for a LONG time. (I wasn't allowed to upload the song).

link it from youtube ... don't upload files here and blow out their (probably limited) storage.