pellicle
Professional Dingbat, Guru and Merkintologist
Superman;n882957 said:
drum roll ... snare hit
Help Support Valve Replacement Forums:
drum roll ... snare hit
Kristine55
Member
Superbob;n882954 said:
SuperBob, thanks for your good thoughts and recommendations. Like you, I wondered what symptoms I'd experience when my Freestyle valve began to fail. It turns out, in my experience, there were no outward symptoms (shortness of breath, decreased energy, etc). Nothing... m
y husband and I live a very active life and I feel terrific
. I was a runner for 30 years, but moved away from that over the past 5-10 years (mainly to preserve my knees); in addition to golf, yoga, various cardio classes/workouts, I'm now an avid hiker and biker. No symptoms at all. My irregularities presented themselves at my annual cardio visit. My cardiologist saw the change with my echo and ordered the MRI. The MRI told the whole story. As I mentioned earlier, my valve, while leaking slightly, is in pretty good shape. If my aortic root wasn't dilated, my doctor would continue to follow the progression of the valve and consider intervention when necessary. The degeneration of my aortic root is forcing the issue. And so, while they are in there, I'm getting a shiny new valve.
Bob, I think you just continue living your best life, as active as you can be. I'm guessing you see your cardiologist annually and he/she gives you a good check up; I believe that's the most important thing we can all do to monitor the status of our hearts. See a trusted medical professional regularly to look for any changes that may not be apparent yet.
And so, here I am, preparing for surgery. Looking forward to, in your words, "the resumption of a wonderful life". I can't wait.
Best,
Kristine
Kristine55
AVR May 2006, age 43
Medtronic Freestyle Aortic Root Heart Valve 29mm, Ascending Aorta Repair
Northwestern Memorial Hospital, Chicago, IL
"In the Waiting Room", April 2018, age 55
Kristine, I am also a Northwestern patient and Dr. McCarthy did my valve surgery in January 2016, it was my 3rd OHS. I ended up choosing a mechanical mitral valve due to it being my 3rd surgery and my age of 43 at the time. I learned a couple months ago that I will probably be having a 4th OHS this time to replace my aortic valve, so I understand the feelings of facing and upcoming surgery, luckily for me I'm not quite there yet. I will say that choosing a type of valve is definitely a personal choice and my advise is to go with your gut and don't second guess yourself, you know what will be the best for you.
I wish you all the best. If you have any specific questions about Northwestern feel free to PM me.
I wish you all the best. If you have any specific questions about Northwestern feel free to PM me.
pellicle
Professional Dingbat, Guru and Merkintologist
Hi
That sucks ... I'm not sure if you posted this before. I don't recall.
Have your surgeries mainly been about the mitral? I see in your bio that you had some sort of aortic surgery done when you were young.
Best Wishes
rnff2;n882982 said:
That sucks ... I'm not sure if you posted this before. I don't recall.
Have your surgeries mainly been about the mitral? I see in your bio that you had some sort of aortic surgery done when you were young.
Best Wishes
Kristine, welcome back to the group. Sorry you have to have your valve replaced again. Sounds like you knew it was coming eventually. Glad you can find great support and information here. I had my mitral valve replaced at 2 years old and again at 13 years old, both mechanical. I've been on Coumadin since 1982. Coumadin has never held me back from having an active lifestyle. Being on it from such a young age, I never had any "before" to compare it to. Last year I was faced with the fact that I needed my third open heart surgery. I still have my valve from 1993, but needed a Pericardiectomy this time. I'm almost 9 weeks out from that OHS and doing great. Do your research on which valve to choose. Wishing you all the best. Glad you came back to the group. I joined in late 2006 or early 2007.
Kristine55
Member
rnff2;n882982 said:
rnff2 -
I agree: each person needs to listen to his/her heart (pun partially intended) and make a good decision about a valve choice. As I decide between a mechanical and a tissue valve, I'll base my decision on the experience I've had for these twelve great years and what makes sense for the future.
I love that you're a Northwestern guy! There are quite a few of us here on VR. As you know, Dr McCarthy is an exceptional surgeon and, especially with a 4th surgery, you'll be getting spectacular care.
I've met with Dr Chris Malaisrie and we've scheduled him to do my surgery. (The surgeon who did my first procedure moved to the east coast.) We felt great about the meeting and love how his experience sounds perfect for my situation. Honestly, the entire team at Northwestern is top-notch. We had such a good experience the first time, we feel very good about going back.
That's all for now. It's a beautiful weekend and there's a walk in my future.
Kristine
Kristine55
AVR May 2006, age 43
Medtronic Freestyle Aortic Root Heart Valve 29mm, Ascending Aorta Repair
Northwestern Memorial Hospital, Chicago, IL
"In the Waiting Room", April 2018, age 55
pellicle;n882983 said:
Thanks...it does suck. I had sub-aortic membrane removed at age 14, something they should have found earlier in my life, I have always had a heart murmur but they said I would out grow it. So I developed cardiomyopathy and aortic valve damage from the elevated LVOT pressures and the aortic valve hitting the membrane for 14 years.
Surgery #2 was supposed to be myectomy and possible aortic valve replacement but they found a cleft in my mitral valve and decided it needed repaired and they felt my aortic valve was OK so they left it alone. I got the diagnosis of Hypertrophic Cardiomyopathy after this surgery. My mitral repair only lasted 6 years.
Surgery #3 was supposed to be mitral valve replacement and possible aortic replacement and once again thought my aortic valve looked OK. Now 2 years later it is getting worse...so now we are watching and waiting for replacement and surgery number 4 and my cardiologist is concerned it may be sooner than later. I really wish they would have just done when they were in there the last time...so frustrating.
pellicle
Professional Dingbat, Guru and Merkintologist
rnff2;n883013 said:
Thanks for the backfill ... saves me wondering about a few things. Indeed I agree with you, given that they know the risks of things why they won't do "proactive" surgery is a bit of a double standard if you ask me.
Kristine -- just found your post directed to me 5 days ago -- sorry I didn't find it earlier. Just wanted to thank you for your encouraging words to me. Hope all the good words and thoughts for you in this thread are encouraging you, too. Must be kind of frustrating to have the valve in serviceable but aneurysm problem to deal with anew. My cardiologist sees me usually about every 4 months. I have left atria enlargement that she was concerned about -- but I went back and checked old echo reports, and it is about the same dimension as it was when I had OHS 14 years ago. Guess it does carry a risk of a-fib developing. Anyway, all good thoughts go with you -- I am confident you will do well, and I look forward to hearing from you regularly. Best wishes!
kschroed
Well-known member
Like you, Kristine, I was here ten years ago for much appreciated support during my mitral valve replacement surgery. (I'm Kay,) Now I'm back to go round two. Thanks goodness this forum is still here!
One thing my cardiologist has always been very careful to emphasize is that valve deterioration is not a linear process - it speeds up, slows down and changes unpredictably. That's why regular echoes plus an admonition to report any symptoms are prescribed.
And also, that you can urgently need surgery without perceiving symptoms . . .
tigerlily
Well-known member
Hi Pellicle. I'm not challenging you with the question that follows but want to know what would happen. My tissue valve is 12 years old and I'm now 65 but still very active. I just got back from a 3 week trip to Ireland and Scotland. I have severe stenosis in my aortic valve and will have to make a valve choice again probably sometime soon. What if you did fall off the roof or cut yourself with a power tool? Would you be less likely to survive because of warfarin? Changing the subject a bit but it's all related, I've been thinking about scenarios for myself. If I went with another tissue valve and again I was relatively lucky and made it another 12 years, I would be 78. I would have considered that to be ancient when I was younger but now I know a lot of people who are active in their 80s. Say at that point, they offer me a TAVR. Right now, we don't really know if they last beyond 5 or 7 years and if they don't then, I would be looking at another surgery at age 83 or 85. This is all of course assuming I make it fine through the next surgery and like to think I will. My dad is 89 now. He has his health problems but he's not ready to throw in the towel and still works in his garden and enjoys life. A lot of people would say that to do all this pro projecting into the future is ridiculous but I'd like to live as long as I'm healthy and can still remain relatively active.
pellicle
Professional Dingbat, Guru and Merkintologist
Hi
understood ... although actually I don't mind if anyone asks questions which are indeed to verify if something I wrote is backed by any facts.
all good
well I'm sorry to read that you've got stenosis occurring on your valve. I'm sure you've got a lot to think about when deciding what to do about that.
to answer your question of falling or cutting:
Falling: a fall of any significance becomes more of a problem as we age, just as your skin becomes less flexible soo too does other tissue in your body, making it less "resilient to shocks". Falls can be complex things with many factrors (seemingly trivial) making the difference. Thus to me warfarin (which is well managed in the INR range between 2 ~ 3) is not likely to be the most significant one.
Cuts: small and insignificant cuts will only be mildly more annoying (again with INR managed between 2 ~ 3), and I personally have not found any serious differences. The same I've found to be true of burises in general. Of course more serious slashes and deep cut wounds will more or less be the same as without warfarin, in that other factors (did you cut the vein or not) will make the biggest difference. There is a lot of evidence to support that if you have a modern bileaflet valve that you could withhold warfarin for a few days after it to assist the wound (assuming it is very deep and needs stitches) to heal. Then resume as normal. You should read my blog post on my perioperative management of INR around a medical procedure.
[quuote]Changing the subject a bit but it's all related, I've been thinking about scenarios for myself. If I went with another tissue valve and again I was relatively lucky and made it another 12 years, I would be 78. I would have considered that to be ancient when I was younger but now I know a lot of people who are active in their 80s. [/quote]
its an important point and one which is all too often ignored when young. We will either be dead (no problems then) or be in a weakened state and have to confront another surgery ... which may indeed be life changing. I've worked in and around the "retirement industry" (as an electronics tech) for a few years and seen many many healthy active 80yo people essentially take a big dive after a surgery (say hip).
So to my mind that's another benefit of a mechanical valve (like there must be some benefits to them right?)
conjecture is difficult into the future as we all know. I would feel inclined towards the situation that if you did get a run to your 80's and need a surgery (which by the way the evidence suggests that tissue valves last longer in older people than younger people as an average) then it could well be that you can have a TAVI done and get another 4 or 5 years. That reduced orifice diameter may not be a significant problem with reduced activity. But this is conjecture.
At the end of the day one can only make analysis of these things in terms of probability. One must eventually cut the cards and see what YOU actually get. Now you can skew the likelyhood of success (say, if you said "any red card" VS "Queens of Spades") in that cut, but you still may get a black card ...
At the end of the day (just as I do every day when I ride my motorcycle) you have to weigh up the choice you make and live with it. I prefer to think that its important to understand the possibilities, but more important to make that choice in as informed a manner as possible and then be comfortable that you made the best choice you could from then on.
Hit me up with any further discussion if you wish, I'm happy to talk through things on the phone too (as that's often easier for everyone)
tigerlily;n883661 said:
understood ... although actually I don't mind if anyone asks questions which are indeed to verify if something I wrote is backed by any facts.
all good
well I'm sorry to read that you've got stenosis occurring on your valve. I'm sure you've got a lot to think about when deciding what to do about that.
to answer your question of falling or cutting:
Falling: a fall of any significance becomes more of a problem as we age, just as your skin becomes less flexible soo too does other tissue in your body, making it less "resilient to shocks". Falls can be complex things with many factrors (seemingly trivial) making the difference. Thus to me warfarin (which is well managed in the INR range between 2 ~ 3) is not likely to be the most significant one.
Cuts: small and insignificant cuts will only be mildly more annoying (again with INR managed between 2 ~ 3), and I personally have not found any serious differences. The same I've found to be true of burises in general. Of course more serious slashes and deep cut wounds will more or less be the same as without warfarin, in that other factors (did you cut the vein or not) will make the biggest difference. There is a lot of evidence to support that if you have a modern bileaflet valve that you could withhold warfarin for a few days after it to assist the wound (assuming it is very deep and needs stitches) to heal. Then resume as normal. You should read my blog post on my perioperative management of INR around a medical procedure.
[quuote]Changing the subject a bit but it's all related, I've been thinking about scenarios for myself. If I went with another tissue valve and again I was relatively lucky and made it another 12 years, I would be 78. I would have considered that to be ancient when I was younger but now I know a lot of people who are active in their 80s. [/quote]
its an important point and one which is all too often ignored when young. We will either be dead (no problems then) or be in a weakened state and have to confront another surgery ... which may indeed be life changing. I've worked in and around the "retirement industry" (as an electronics tech) for a few years and seen many many healthy active 80yo people essentially take a big dive after a surgery (say hip).
So to my mind that's another benefit of a mechanical valve (like there must be some benefits to them right?)
conjecture is difficult into the future as we all know. I would feel inclined towards the situation that if you did get a run to your 80's and need a surgery (which by the way the evidence suggests that tissue valves last longer in older people than younger people as an average) then it could well be that you can have a TAVI done and get another 4 or 5 years. That reduced orifice diameter may not be a significant problem with reduced activity. But this is conjecture.
At the end of the day one can only make analysis of these things in terms of probability. One must eventually cut the cards and see what YOU actually get. Now you can skew the likelyhood of success (say, if you said "any red card" VS "Queens of Spades") in that cut, but you still may get a black card ...
At the end of the day (just as I do every day when I ride my motorcycle) you have to weigh up the choice you make and live with it. I prefer to think that its important to understand the possibilities, but more important to make that choice in as informed a manner as possible and then be comfortable that you made the best choice you could from then on.
Hit me up with any further discussion if you wish, I'm happy to talk through things on the phone too (as that's often easier for everyone)
pellicle
Professional Dingbat, Guru and Merkintologist
PS tigerlily
I recommend you watch this presentation, sure it is older and sure its aimed more at younger patients, but all the points made about the benefits of modern anticoagulation management making mechanical valve a better choice than it may seem are sound to this day
https://www.youtube.com/watch?v=LlVVxvQafmI
he makes the point too that in many cases people with tissue prosthetic valves require ongoing warfarin therapy due to thrombosis. So thus one would be in the worst outcome for choices, having chosen a valve which will fail to avoid warfarin but then being on warfarin anyway (and not getting a valve which has a very good chance of never needing reoperation).
Shalom
I recommend you watch this presentation, sure it is older and sure its aimed more at younger patients, but all the points made about the benefits of modern anticoagulation management making mechanical valve a better choice than it may seem are sound to this day
https://www.youtube.com/watch?v=LlVVxvQafmI
he makes the point too that in many cases people with tissue prosthetic valves require ongoing warfarin therapy due to thrombosis. So thus one would be in the worst outcome for choices, having chosen a valve which will fail to avoid warfarin but then being on warfarin anyway (and not getting a valve which has a very good chance of never needing reoperation).
Shalom
pellicle
Professional Dingbat, Guru and Merkintologist
mrfox;n883710 said:
Indeed, however due to point of care machines such as the coagucheck that I use weekly at home and take with me when I travel we do indeed have exactly better outcomes with warfarin (as mentioned in that video)
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So the grass we have already is the greener grass
