Choosing valve for surgery #2

[tezza]

Hi, I have recently joined this forum. I am 11 1/2 years post surgery, having chosen a biological valve to replace a bicuspid valve at age 45, in the hope that technology will provide an alternative answer when the time comes to replace it and also in the hope that I would get longer out of it than I actually did. I am now facing another surgery, with severe stenosis of the valve, and symptomatic with shortness of breath, fatigue, dizziness, angina. And now have the decision to make re which procedure/valve to choose again.
Both my surgeon and cardiologist are less enthusiastic about a mechanical valve, due to complications with warfarin. I am a "bleeder" - all 5 of my births resulted in haemorhaging despite no other complications, my first OHS surgery I had to go back in within 24 hours due to bleeding, every dental procedure results in hematomas with followup lancing, etc. and I am constantly bruised - I just have rest my elbows on the desk and I bruise or carry something on my forearms and I am bruised. I am constantly reassuring people that I am not a battered wife! The bruises last 3-4 weeks. My bloods are fine and no reason can be found. Anyway, for those reasons, I am wary about having to go on warfarin, along with the lifestyle changes I would need to make, but I am also wary about having to have a redo surgery down the track.
Another option presented to me is to have the TAVR done now, but with the caveat that they have no idea how long it will last, and then I will be faced with the option of OHS (their suggestion is to go biological) and do another TAVR when the next biological valve that wears out, which should then see me to the end of my days as the technology improves.
The other option presented is to do a biological now, then TAVR when that wears out, and then perhaps another TAVR if the technology improves some more, or if not, yet another OHS.

Whatever I choose, I do have one more OHS to have. I am so undecided, I'm chopping and changing my mind everyday. All 3 options present their own pros and cons, and my brain is tired of thinking through it all. Everyone tells me to choose what is right for me, but I just can't decide what to do, and time is running out for me - my surgery is imminent in the next 3-4 weeks, with a full battery of tests being done next week to see if I am actually a good candidate for a TAVR. I also have mod-severe coarctation of the aorta, so there is some question over whether that will present a difficulty or not. At this stage, that has caused me any grief, so nothing will be done to repair that until it does. I actually asked about having the whole kit and kaboodle fixed at the same time, but my surgeon, Dr Jalali said that no surgeon would do that.

I would love to hear your opinions and thoughts, and what helped you make a decision on what valve you chose. We have a very active lifestyle and are close to early retirement (in the next 2 years), with intentions of travelling (once COVID settles) to more remote locations. We also love to ski and hike etc. So I want to make a choice that will suit our lifestyle. For this reason, I am also wary of warfarin. However, I am also wary of further surgery and the slow decline and change to lifestyle as the valve starts to fail - the past 2 years I have had to steadily slow down until I have gotten to the point that surgery is warranted and that has been a pain in the backside. The decision making process is driving me crazy and the clock is ticking! Thanks for any input.

 

[Superman]

Challenging situation overall, but one finds things to be grateful for. I would be grateful that you know about your bleeding challenges and didn’t find out after going mechanical. And five kids too? I’m lucky that my wife did all the hard work for our five.

As far as your question, it’s obviously a very personal decision, but if a second surgery is in the cards regardless of choice today, I’d opt for the second surgery while I was younger vs older. They don’t get easier. That’s not telling you what to do. But it is what I would do if I were in your position and knowing what it was like going through a second surgery.

My first was when I was 17 and my second was when I was 36. First was a lot easier to bounce back from. I’m not interested in a third if I can at all help it. I went mechanical both times, but an aneurysm drove the second surgery. As far as lifestyle goes, many will be along to tell you all they do on warfarin. I’ve been skiing, we hike regularly, road trip all over the place, I was a pretty avid mountain biker in my 20’s taking warfarin. I eat what I want and test regularly. Adjust my dose as needed. I bring my meds and testing supplies on vacation and email my results in.

One of my favorite photos I took this year at half way point of a 9 mile hike up 2,200 ft in elevation.

 

[tezza]

Challenging situation overall, but one finds things to be grateful for. I would be grateful that you know about your bleeding challenges and didn’t find out after going mechanical. And five kids too? I’m lucky that my wife did all the hard work for our five.

As far as your question, it’s obviously a very personal decision, but if a second surgery is in the cards regardless of choice today, I’d opt for the second surgery while I was younger vs older. They don’t get easier. That’s not telling you what to do. But it is what I would do if I were in your position and knowing what it was like going through a second surgery.

My first was when I was 17 and my second was when I was 36. First was a lot easier to bounce back from. I’m not interested in a third if I can at all help it. I went mechanical both times, but an aneurysm drove the second surgery. As far as lifestyle goes, many will be along to tell you all they do on warfarin. I’ve been skiing, we hike regularly, road trip all over the place, I was a pretty avid mountain biker in my 20’s taking warfarin. I eat what I want and test regularly. Adjust my dose as needed. I bring my meds and testing supplies on vacation and email my results in.

One of my favorite photos I took this year at half way point of a 9 mile hike up 2,200 ft in elevation.
View attachment 887522

Great pic! Thanks for your reply. Yes, lots of things to be grateful for...I'm interested to hear in what ways surgery was different second time around...I actually found first time round pretty rugged, and my thinking has also been that it would be better to be younger to go through a redo than older, although my surgeon disagrees and doesn't think that is a factor at all.

 

[ottagal]

Hi Tezza, I so feel for you. These are not easy decisions. I am in a very similiar predicament as you except I am not currently exhibiting symptoms. The echo shows severe stenosis as well and I am 11 years 3 months out since my last and similiar in age to you.
I have been going back and forth with my decisions; however, I have another wrench thrown in as I was also dealing with a cancer diagnosis this past year. I am trying to figure out what the best choice would be (especially if I have to deal with CA moving forward and impacts of warfarin or future surgery ). I, too am an active individual and would like to remain that way moving forward.

Of course, none of us has a crystal ball, but I am inclined to agree with Superman that I may choose 'surgery' over TAVR at a younger age than the other way around (although they "think" I "may" be a candidate for TAVR). What makes me pause is the unknown of how long TAVR will last. If I were in my 80's then I would likey choose that. Of course, these are just my 'thoughts' right now and I have not arrived at a definitive decision. I may not be a candidate for TAVR as I have a 21 mm valve which may be too small. So, it will be a toss up between mechanical rest of my life or OHS and possibly another redo down the road.
I am going to ask about the Inspiris Resilia valve as well.
Each individual situation is unique and one has to look at your own health issues vis a vis valve choice.
Have you written down the pros and cons of both?
Then weight the importance of each to you.

Remember, that whatever surgery you choose, it will be lifesaving so don't be too hard on yourself.

If we had a crystal ball, it would make it easier, but we don't.

Sending you the most positive thoughts for peace moving forward.

All the very best,

 

[tezza]

Hi Tezza, I so feel for you. These are not easy decisions. I am in a very similiar predicament as you except I am not currently exhibiting symptoms. The echo shows severe stenosis as well and I am 11 years 3 months out since my last and similiar in age to you.
I have been going back and forth with my decisions; however, I have another wrench thrown in as I was also dealing with a cancer diagnosis this past year. I am trying to figure out what the best choice would be (especially if I have to deal with CA moving forward and impacts of warfarin or future surgery ). I, too am an active individual and would like to remain that way moving forward.

Of course, none of us has a crystal ball, but I am inclined to agree with Superman that I may choose 'surgery' over TAVR at a younger age than the other way around (although they "think" I "may" be a candidate for TAVR). What makes me pause is the unknown of how long TAVR will last. If I were in my 80's then I would likey choose that. Of course, these are just my 'thoughts' right now and I have not arrived at a definitive decision. I may not be a candidate for TAVR as I have a 21 mm valve which may be too small. So, it will be a toss up between mechanical rest of my life or OHS and possibly another redo down the road.
I am going to ask about the Inspiris Resilia valve as well.
Each individual situation is unique and one has to look at your own health issues vis a vis valve choice.
Have you written down the pros and cons of both?
Then weight the importance of each to you.

Remember, that whatever surgery you choose, it will be lifesaving so don't be too hard on yourself.

If we had a crystal ball, it would make it easier, but we don't.

Sending you the most positive thoughts for peace moving forward.

All the very best,

Hi Ottagal, I'm so sorry to hear of your CA diagnosis, not an easy thing. Good luck with that, I hope everything goes well. Thank you for your thoughts...it is good to hear from people who have been there, are there and have done that. Yes, a crystal ball would be wonderful! I have got some pros and cons written down, but just not helping me nail the decision yet..I guess once the tests re the TAVR come back that will shed a little more light on things and perhaps knock one option off the list, who knows?

 

[MdaPA]

I also have mod-severe coarctation of the aorta, .....I actually asked about having the whole kit and kaboodle fixed at the same time, but my surgeon, Dr Jalali said that no surgeon would do that.

Did your surgeon give a reason why "no surgeon would do that"? Although I hear coarctation can be repaired via catheterization I think I would try to get another opinion on getting it taken care of in the same OHS.

My wife, who has had 3 OHS's for valve replacement and repair (the 3rd one at age 50), encountered a similar issue. For her 3rd surgery, she visited two very reputable and experienced valve surgeons. One surgeon wanted to just replace her worn out bovine MV with another tissue valve and leave the other leaking/stenotic valves for another day (means a likely 4th or more OHS down the road). The objective here was no need for anti-coagulation therapy and to limit the complexity and duration of the surgery. The other surgeon strongly pushed for mechanical replacements to the MV and AV and then see once inside how to deal with the PV and TV (to repair or replace). She opted for the later (to use your words, the "whole kit and kaboodle") and if she does need a 4th OHS on her PV or TV (if she's not a candidate for TAVR), the expectation and hope is that it will be further down the road.

 

[Superman]

Great pic! Thanks for your reply. Yes, lots of things to be grateful for...I'm interested to hear in what ways surgery was different second time around...I actually found first time round pretty rugged, and my thinking has also been that it would be better to be younger to go through a redo than older, although my surgeon disagrees and doesn't think that is a factor at all.

Hard to say if anything will definitely be different for any one individual. I’m 48 now. I was a teenager for my first, so my ability to bounce back was probably higher than most who don’t have to deal with this until they’re my current age or older. At 36, I just wasn’t a skinny teenager anymore. With four young kids at the time, I wasn’t in the best shape of my life.

But even without that, the gory details include sawing through bone scar tissue, which is much harder than fresh bone. I was on the table a lot longer just from that. My body didn’t get rid of all the fluid as easily the second time around either. Then, during recovery I developed pancreatitis. Eating anything sweet was disgusting. Just overpowering. My teeth hurt like crazy and became very sensitive where anything other than room temp water hurt to drink. The good news was with those two issues, I lost a lot of weight afterwards!

 

[ottagal]

Hi Ottagal, I'm so sorry to hear of your CA diagnosis, not an easy thing. Good luck with that, I hope everything goes well. Thank you for your thoughts...it is good to hear from people who have been there, are there and have done that. Yes, a crystal ball would be wonderful! I have got some pros and cons written down, but just not helping me nail the decision yet..I guess once the tests re the TAVR come back that will shed a little more light on things and perhaps knock one option off the list, who knows?

Thank you! I forget to tell you that I also have a bioprosthetic valve and was dealing with some bleeding issues back then...hence on of the reasons I went that route versus mechanical. Please keep us posted! Thinking of you...

 

[pellicle]

Hi
and welcome to the joint. Firstly let me express surprise to see my last Surgeons' name raised here. Queenslander?

Anyway based on this point alone:

I am a "bleeder" - all 5 of my births resulted in haemorhaging despite no other complications, my first OHS surgery I had to go back in within 24 hours due to bleeding, every dental procedure results in hematomas with followup lancing, etc. and I am constantly bruised - I

I would second your choice of a tissue prosthetic. While you say:

Whatever I choose, I do have one more OHS to have. I am so undecided, I'm chopping and changing my mind everyday.

I think this simply shows that you are across all the options and see the benefits and hazards of each in a clear and unbiased way. I think that's great.

So your current age is about 56 is that correct, and this coming one would be your second OHS right?

I can say that having had 3 surgeries that three is doable (here I am) but equally I was cautioned about a 4th (especially with the given of complex aneurysm surgery on my 3rd making a 4th even worse.

I'm not prone to bleeding and I picked mechanical to mitigate against a 4th. My first was a "repair" (about age 12) my second a cryo preserved homograft (28yo) and my 3rd the (ATS) mechanical.

I'm obviously different to you and have had no problems in managing my warfarin / INR as yet (coming up on 10 years) and have lived (and continue to lead) an active life.

Were I you (taking into account the above factors) I'd go the option you proposed here:

The other option presented is to do a biological now, then TAVR when that wears out, and then perhaps another TAVR if the technology improves some more, or if not, yet another OHS.

As I do the maths and probability assessment you should anticipate about 18 years from the valve you get next, putting you at 74 (or so) in which case a TAVR option would likely be "improved" over todays tech (fingers crossed).

However I'm curious why you'd lean towards a mech valve. Iterating that here may even help you self clarify it.

Best Wishes

reach out by PM if you want a phone based chin wagg

 

[tezza]

Hi
and welcome to the joint. Firstly let me express surprise to see my last Surgeons' name raised here. Queenslander?

Anyway based on this point alone:


I would second your choice of a tissue prosthetic. While you say:



I think this simply shows that you are across all the options and see the benefits and hazards of each in a clear and unbiased way. I think that's great.

So your current age is about 56 is that correct, and this coming one would be your second OHS right?

I can say that having had 3 surgeries that three is doable (here I am) but equally I was cautioned about a 4th (especially with the given of complex aneurysm surgery on my 3rd making a 4th even worse.

I'm not prone to bleeding and I picked mechanical to mitigate against a 4th. My first was a "repair" (about age 12) my second a cryo preserved homograft (28yo) and my 3rd the (ATS) mechanical.

I'm obviously different to you and have had no problems in managing my warfarin / INR as yet (coming up on 10 years) and have lived (and continue to lead) an active life.

Were I you (taking into account the above factors) I'd go the option you proposed here:


As I do the maths and probability assessment you should anticipate about 18 years from the valve you get next, putting you at 74 (or so) in which case a TAVR option would likely be "improved" over todays tech (fingers crossed).

However I'm curious why you'd lean towards a mech valve. Iterating that here may even help you self clarify it.

Best Wishes

reach out by PM if you want a phone based chin wagg

Hi there Pellicle,
In answer to your questions, yep, I'm a Queenslander, 56 right now, and this will be my second valve.

Why I'm leaning towards a mech valve? Probably because I don't want to risk having to have more than one more surgery, I guess. I also have struggled with the decline in function again, and it is 2 years out of my life gradually wearing down until I am bad enough to have the surgery/procedure again. A mechanical valve is done with, no more decline to go through, no more OHS...BUT for me, it would be dealing with the effects of being at risk of bleeding perhaps more than most.

My docs are heavily leaning on me to do the TAVR now, see how long it lasts, and then follow up with a biological valve and then another TAVR when that wears out. I see it as buying time before the next surgery, and not as a "fix", which of course, it isn't, nothing is really when you get down to it. I hate the thought of an OHS even now, let alone when I am older. And to me, that is just too many surgeries/procedures...can you tell I'm getting very nervous about the whole procedure, the memory of the last surgery has not dimmed any!
I guess I am also wary about the TAVR right now, given that I am led to believe that it is only in the last couple of years that it has been used on younger patients. 3 years ago, when I started to deteriorate, I was told then that I wouldn't be a candidate as it wouldn't last and the redo later on would be much more difficult (more scar tissue, etc). Now I'm told that isn't an issue now, as they have improved since then. Nevertheless, when I am told that it could only last 12months, or it could last 10 years, I just don't like that level of uncertainty!

Sorry, I am rambling, but it is good to chat with those who really understand what it is like to face this type of surgery...most of my acquaintances just shrug their shoulders and tell me I have a lot of thinking to do!
Might take you up on your very kind offer for a chat at some stage. Thanks so much.

 

[tezza]

Did your surgeon give a reason why "no surgeon would do that"? Although I hear coarctation can be repaired via catheterization I think I would try to get another opinion on getting it taken care of in the same OHS.

My wife, who has had 3 OHS's for valve replacement and repair (the 3rd one at age 50), encountered a similar issue. For her 3rd surgery, she visited two very reputable and experienced valve surgeons. One surgeon wanted to just replace her worn out bovine MV with another tissue valve and leave the other leaking/stenotic valves for another day (means a likely 4th or more OHS down the road). The objective here was no need for anti-coagulation therapy and to limit the complexity and duration of the surgery. The other surgeon strongly pushed for mechanical replacements to the MV and AV and then see once inside how to deal with the PV and TV (to repair or replace). She opted for the later (to use your words, the "whole kit and kaboodle") and if she does need a 4th OHS on her PV or TV (if she's not a candidate for TAVR), the expectation and hope is that it will be further down the road.

No he didn't really, just made a vague reference to it becoming too big a surgery when it isn't necessary. The coarct hasn't changed in about 20 years now, so I think they expect that it probably isn't going to and if it ain't broke, it don't need fixin'. I hope your wife is going well!

 

[pellicle]

Sorry, I am rambling, but it is good to chat

rambling is what its all about :-D

My docs are heavily leaning on me to do the TAVR now, see how long it lasts,

well there's nothing like having a younger lab rat to try this stuff on.

Having said that you'll probably get at least 7 years out of it (given your youth and active life style, So then if you had an OHS and a bioprosthesis at that point you'd probably get 20 (and be younger).

you will of course naturally suffer Structural Valve Degredation and you now have some idea how that onsets and what the outcomes are.

Best Wishes

 

[MdaPA]

No he didn't really, just made a vague reference to it becoming too big a surgery when it isn't necessary. The coarct hasn't changed in about 20 years now, so I think they expect that it probably isn't going to and if it ain't broke, it don't need fixin'. I hope your wife is going well!

In your original post, you mentioned you "also have mod-severe coarctation of the aorta". As you are getting OHS to address your aortic valve as that's the pressing issue today, I would still want some explanation, not a vague reference, as to why the coarctation also can't/shouldn't be addressed. If they are confident that it's stable and can be addressed later by other methods (i.e. via catheterization) if/when needed, then fine. That should alleviate your concerns then. But know that there may be other surgeons that would tackle repairing it in same OHS when they are working on your valve if indicated. It may be a longer and more difficult surgery for the surgeon but in the long run it may be a better option for you.

Aortic Coarctation Management and Treatment | Cleveland Clinic

Yes, my wife is doing very well, thank you!

Best of luck!

 

[vitdoc]

There are other considerations in the decision. What is the status of the aorta? My third open heart was driven by the need to repair my 6.5 cm aneurysm not the valve which was a mechanical St. Jude that had been in for 23 years. So all the discussion about tissue/TAVR/tissue could be made moot if you develop an aneurysm or need other surgery for the coarctation.
Assuming that mechanical is off the table due to your apparent non diagnosed bleeding issues one could make a case for TAVR now and open heart later. Has there been any enlargement of the aorta?
Have you been to a hematologist for a thorough evaluation of your bleeding issues?
Aside from the unpleasantness of surgery (which I detest after 3 open hearts)
every procedure has some risk including TAVR. So minimizing the number of procedures should also be a consideration.

 

[CarolM]

Hi, I have recently joined this forum. I am 11 1/2 years post surgery, having chosen a biological valve to replace a bicuspid valve at age 45, in the hope that technology will provide an alternative answer when the time comes to replace it and also in the hope that I would get longer out of it than I actually did. I am now facing another surgery, with severe stenosis of the valve, and symptomatic with shortness of breath, fatigue, dizziness, angina. And now have the decision to make re which procedure/valve to choose again.
Both my surgeon and cardiologist are less enthusiastic about a mechanical valve, due to complications with warfarin. I am a "bleeder" - all 5 of my births resulted in haemorhaging despite no other complications, my first OHS surgery I had to go back in within 24 hours due to bleeding, every dental procedure results in hematomas with followup lancing, etc. and I am constantly bruised - I just have rest my elbows on the desk and I bruise or carry something on my forearms and I am bruised. I am constantly reassuring people that I am not a battered wife! The bruises last 3-4 weeks. My bloods are fine and no reason can be found. Anyway, for those reasons, I am wary about having to go on warfarin, along with the lifestyle changes I would need to make, but I am also wary about having to have a redo surgery down the track.
Another option presented to me is to have the TAVR done now, but with the caveat that they have no idea how long it will last, and then I will be faced with the option of OHS (their suggestion is to go biological) and do another TAVR when the next biological valve that wears out, which should then see me to the end of my days as the technology improves.
The other option presented is to do a biological now, then TAVR when that wears out, and then perhaps another TAVR if the technology improves some more, or if not, yet another OHS.

Whatever I choose, I do have one more OHS to have. I am so undecided, I'm chopping and changing my mind everyday. All 3 options present their own pros and cons, and my brain is tired of thinking through it all. Everyone tells me to choose what is right for me, but I just can't decide what to do, and time is running out for me - my surgery is imminent in the next 3-4 weeks, with a full battery of tests being done next week to see if I am actually a good candidate for a TAVR. I also have mod-severe coarctation of the aorta, so there is some question over whether that will present a difficulty or not. At this stage, that has caused me any grief, so nothing will be done to repair that until it does. I actually asked about having the whole kit and kaboodle fixed at the same time, but my surgeon, Dr Jalali said that no surgeon would do that.

I would love to hear your opinions and thoughts, and what helped you make a decision on what valve you chose. We have a very active lifestyle and are close to early retirement (in the next 2 years), with intentions of travelling (once COVID settles) to more remote locations. We also love to ski and hike etc. So I want to make a choice that will suit our lifestyle. For this reason, I am also wary of warfarin. However, I am also wary of further surgery and the slow decline and change to lifestyle as the valve starts to fail - the past 2 years I have had to steadily slow down until I have gotten to the point that surgery is warranted and that has been a pain in the backside. The decision making process is driving me crazy and the clock is ticking! Thanks for any input.

Hi,

I had 1st at age 57 to replace a BAV, 2nd at age 65, both OHS and I/my surgeon chose a bovine valve. I only had 7.5 years before my replacement valve became severely stenotic. The most recent valve is the Inspiris Resilia (sp?) which is expandable (for TAVR next time) and has an anti-calcification coating.

I agree, the 1st surgery wasn't easy. So, I made sure I was in better shape physically/mentally before the 2nd surgery. I worked full time and went to the gym right up to the day before my surgery in February 2020. I found my recovery the 2nd time to be smoother, even with delayed cardiac rehab due to Covid restrictions. Knowing what to expect was helpful. I still walked every day to regain my strength and stamina.

If possible, don't allow the mental back-and-forth dilemma to take over. As everyone here says, there is truly no wrong choice. Do what you feel most comfortable with right now. No one has a crystal ball for the future.

Best of luck getting back to good health.

 

[tezza]

So I have just spent the best part of a week going through a number of pre-surgery tests...CT Scan, Angiogram, TOE, blood tests, lung function test, etc, etc. My results were sent to case conference yesterday, because I am so undecided on making the decision, with 3 surgeons, 3 cardiologists, and a range of other doctors for discussion and recommendations, which I will get next week when I see the cardiologist again.

In the meantime, have been told I have thrombocytopenia, low platelets, which is apparently is the cause of the excessive bleeding and bruising, and is just something that is my normal - on looking back at all blood work over the years, that has been a constant. My coarctation continues to be stable and they are not expecting that to change, as it hasn't changed in such a long time, so not expecting any nasty surprises there.

I also found out that I would be the youngest they have done a TAVR on in my area, if I chose to go that way, so somewhat a guinea pig in that regard. So I think I have made the decision not to do the TAVR right now, simply because I don't want to live with the constant uncertainty as to how long this thing might/might not last, and I would rather have some more data around how it goes in younger people who are active and fit, because I certainly intend to get back to that once the surgery is over! Right now, can't make it up the stairs in my house without getting short of breath and dizzy!

So still making a decision between biological again or mechanical. The mechanical is compelling in the thought of not having to have any more surgery, but the contraindications for warfarin for me are an issue. I'm not concerned about learning how to manage it...I am capable of doing that, but the bleeding issue is probably a bigger risk factor that needs more consideration. But the biological route does carry the legacy of further surgery of one kind or another, which is troubling to me.

I will let you know what gems of wisdom I am fed on Monday with the cardiologist visit!
Thank you all for your input and support, I appreciate it very much.

 

[dick0236]

So I have just spent the best part of a week going through a number of pre-surgery tests...CT Scan, Angiogram, TOE, blood tests, lung function test, etc, etc. My results were sent to case conference yesterday, because I am so undecided on making the decision, with 3 surgeons, 3 cardiologists, and a range of other doctors for discussion and recommendations, which I will get next week when I see the cardiologist again.

In the meantime, have been told I have thrombocytopenia, low platelets, which is apparently is the cause of the excessive bleeding and bruising, and is just something that is my normal - on looking back at all blood work over the years, that has been a constant. My coarctation continues to be stable and they are not expecting that to change, as it hasn't changed in such a long time, so not expecting any nasty surprises there.

I also found out that I would be the youngest they have done a TAVR on in my area, if I chose to go that way, so somewhat a guinea pig in that regard. So I think I have made the decision not to do the TAVR right now, simply because I don't want to live with the constant uncertainty as to how long this thing might/might not last, and I would rather have some more data around how it goes in younger people who are active and fit, because I certainly intend to get back to that once the surgery is over! Right now, can't make it up the stairs in my house without getting short of breath and dizzy!

So still making a decision between biological again or mechanical. The mechanical is compelling in the thought of not having to have any more surgery, but the contraindications for warfarin for me are an issue. I'm not concerned about learning how to manage it...I am capable of doing that, but the bleeding issue is probably a bigger risk factor that needs more consideration. But the biological route does carry the legacy of further surgery of one kind or another, which is troubling to me.

I will let you know what gems of wisdom I am fed on Monday with the cardiologist visit!
Thank you all for your input and support, I appreciate it very much.

 

[Chuck C]

Hi Tezza,
You said: " In the meantime, have been told I have thrombocytopenia, low platelets, which is apparently is the cause of the excessive bleeding and bruising, and is just something that is my normal - on looking back at all blood work over the years, that has been a constant."
This would explain your easy bruising and bleeding. After a vaccination, my oldest daughter developed ITP, which is a rare, but known, reaction to the MMR vaccine. ITP involves a low platelet count, and she was covered in bruises- they actually had to have someone from social services check us out to make sure that we weren't giving her the bruises. They sent us to a pediatric oncologist who put her on a medication, which brought her platelet count up to normal within a couple of weeks. Have you and your doctors discussed therapeutics that might raise your platelet count? If you could bring your platelet count to normal, perhaps going mechanical would be something you and your medical team may want to consider to reduce your risk of future operations.

 

[Superman]

So I have just spent the best part of a week going through a number of pre-surgery tests...CT Scan, Angiogram, TOE, blood tests, lung function test, etc, etc. My results were sent to case conference yesterday, because I am so undecided on making the decision, with 3 surgeons, 3 cardiologists, and a range of other doctors for discussion and recommendations, which I will get next week when I see the cardiologist again.

In the meantime, have been told I have thrombocytopenia, low platelets, which is apparently is the cause of the excessive bleeding and bruising, and is just something that is my normal - on looking back at all blood work over the years, that has been a constant. My coarctation continues to be stable and they are not expecting that to change, as it hasn't changed in such a long time, so not expecting any nasty surprises there.

I also found out that I would be the youngest they have done a TAVR on in my area, if I chose to go that way, so somewhat a guinea pig in that regard. So I think I have made the decision not to do the TAVR right now, simply because I don't want to live with the constant uncertainty as to how long this thing might/might not last, and I would rather have some more data around how it goes in younger people who are active and fit, because I certainly intend to get back to that once the surgery is over! Right now, can't make it up the stairs in my house without getting short of breath and dizzy!

So still making a decision between biological again or mechanical. The mechanical is compelling in the thought of not having to have any more surgery, but the contraindications for warfarin for me are an issue. I'm not concerned about learning how to manage it...I am capable of doing that, but the bleeding issue is probably a bigger risk factor that needs more consideration. But the biological route does carry the legacy of further surgery of one kind or another, which is troubling to me.

I will let you know what gems of wisdom I am fed on Monday with the cardiologist visit!
Thank you all for your input and support, I appreciate it very much.

Curious if you could request a trial run of warfarin prior to your surgery to see if you can manage a consistent range? If not, stop taking it and go with a tissue valve. Nothing magical happens with warfarin when you get a valve and plenty of folks are on anti-coagulation therapy without mechanical valves. A test drive prior to making a lifetime commitment seems reasonable given your blood concerns.

 

[tom in MO]

In other parts of the world, warfarin is not used as an anticoagulant. Maybe you should ask if there is an alternative drug that may fit you better. If you decide on mechanical, there are also valves that tolerate lower INR, maybe you should ask about those. "One shoe does not fit all."