Hello all, I am 51 years old and have a bicuspid aortic valve that needs to be replaced. Have just met surgeon and I’m in the process getting all my testing done before surgery. Angioplasty in a couple of weeks. I am considered severe because my mean gradient is currently at 46 and my valve area is 1.1 cm. A little background on me. I am currently 4 years cancer free from colorectal cancer and have discovered I have a genetic gene abnormally called lynch syndrome. It makes me susceptible to several cancers , but colon being the predominant one. Now on to the cardiac surgeon. He has said since I have lynch and I need a colonoscopy yearly along with the possibility of future surgeries that I am a candidate for both a tissue or a mechanical valve. I am not sure what to do . The thought of blood thinners and surgery scares me. He said he would recommend an on X valve and I would have to use injections to bridge the blood thinners. On the other hand with a tissue valve he said I would probably need a second open surgery , then possibly a third through tavr. I’d gathered from his body language and demeanor he was favoring a tissue, but he wanted me to do some research and then we could decide on my next visit. On a side note how long did you go from first meeting with surgeon to surgery? I’m looking at having surgery in mid January. I do have heart palpitations almost daily, they scare me sometimes, but my heart is in good condition according to the echocardiogram done on me. Right and left side both looked good. I was looking at the inspirius resilient by Edwards as the possible tissue valve. Any advise and information would be greatly appreciated. Thank you all.
Heading for a new aortic valve.
- Thread starter Buckeye
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pellicle
Professional Dingbat, Guru and Merkintologist
Hi
what to pick and why are personal reasons, however (perhaps they'll also comment) there have been people here who have found (if I'm remembering it correctly) that cancer treatments and mechanical heart valves are not bad bed partners.
I know that some additional thinking and planning are required to manage warfarin (Anti-Coagulation Therapy) but it can be done in almost all situations.
Its more common now to recommend for a tissue prosthesis and as I interpret it this is because of things like:
Myself I've had 3 OHS, the last one (when I was 48) was a mechanical valve. I actually administer my own doses and do my own testing, so I'm what one calls "self managing".
I get palipations occasionally as well as "extra beats" or "missed beats" ... have had most of my life and I manged to live on 3 continents and learn a few languages (and then forget some).
I think that the best we can do for you in this forum is to allow you to ask questions and re-enforce what's true and dispel any misconceptions. However the decision as to what valve to pick and why is really up to you. If you were 10 years younger I'd steer you towards a mechanical, but at your age I see that the differences are minor.
May I recommend you take a cup of tea or coffee and listen to this carefully (take notes)
Lastly on managing INR I've got a few points on my blog which you may find helpful reading:
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
https://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html
Best Wishes
what to pick and why are personal reasons, however (perhaps they'll also comment) there have been people here who have found (if I'm remembering it correctly) that cancer treatments and mechanical heart valves are not bad bed partners.
I know that some additional thinking and planning are required to manage warfarin (Anti-Coagulation Therapy) but it can be done in almost all situations.
Its more common now to recommend for a tissue prosthesis and as I interpret it this is because of things like:
- patient concern about ACT
- lack of patient compliance with taking their doses
- need for monitoring INR to properly administer ACT dose (which is essentially a revenue issue with clinics not liking to loose that income stream to the increasingly used Point of Care machines {like I use})
Myself I've had 3 OHS, the last one (when I was 48) was a mechanical valve. I actually administer my own doses and do my own testing, so I'm what one calls "self managing".
I get palipations occasionally as well as "extra beats" or "missed beats" ... have had most of my life and I manged to live on 3 continents and learn a few languages (and then forget some).
I think that the best we can do for you in this forum is to allow you to ask questions and re-enforce what's true and dispel any misconceptions. However the decision as to what valve to pick and why is really up to you. If you were 10 years younger I'd steer you towards a mechanical, but at your age I see that the differences are minor.
May I recommend you take a cup of tea or coffee and listen to this carefully (take notes)
Lastly on managing INR I've got a few points on my blog which you may find helpful reading:
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
https://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html
Best Wishes
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Agian
Well-known member
I have an on-x. It clicks, but I don't care. I understand why a young woman might consider it 'unattractive', but it makes no difference to this bearded, middle-aged fat-arse. It gives me peace of mind.
Warfarin is no problem. Just another tablet, amongst others. I eat whatever I want, including spinach. Don't know what kale is anyway (the other no-no). One or two glasses of red wine nightly.
I'm 51 like you. No probs with the On-X. Can't comment on tissue valves.
Warfarin is no problem. Just another tablet, amongst others. I eat whatever I want, including spinach. Don't know what kale is anyway (the other no-no). One or two glasses of red wine nightly.
I'm 51 like you. No probs with the On-X. Can't comment on tissue valves.
Thanks guys for the information. I know the choice is mine, and I want to make the right decision. The other factor I have to consider is I drive professionally for UPS. I have a CDL and according to DOT regulations I would have to keep my INR in check before I can get a recertification card. I have to be off work a minimum of 3 months then be cleared by my cardiologist before taking the physical. How hard would the INR be to keep in check daily or after a procedure like a colonoscopy or going to the dentist? Is bleeding a big issue if I get hurt at work? I don’t want to loose my job and income. Just another cog in the wheel I am dealing with. Any information I can gather before talking to surgeon again in about 3 weeks would be helpful. The best tissue/ mechanical ? Thanks for all your help.
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LoveMyBraveHeart
Well-known member
Hello!
My sweet fiance, Mathias, has had both the Edwards Inspiris Resilia valve and the On-X valve. His surgeon in Cleveland spoke highly of the Edwards valve, saying it could last into the 15-20 year range. However, it has not been used in the US for very long, so the evidence isn't definitive. Mathias' 2018 AVR was unsuccessful with the Edwards because the valve chosen for him was too small and was causing severe paravalvular leak. He was re opened this past August and an On-X valve was placed.
The On-X valve does click, we are finding I hear it more than he does, but it's reassuring for me. I can take his pulse from across the room! He has been INR testing once a week through his clinic, and has been in range about 60% of the time (mostly due to changing of his medications after surgery). He eats what he wants, drinks alcohol and really doesn't think much of taking his warfarin...I get his dose ready and am the one to track his results and dosing anyway. My recommendation on this is to be your own advocate. Try not to fall into the low INR facade that the On-X valve has been FDA approved for...The valve has been used since 1996, and with great success, but the approval for a lower INR has only been around since I think 2015 or so? (Someone else probably knows more about this than I). The studies (for me) aren't extensive enough to be risking a lower INR (like in the 1.5 range) when the St Jude valves have been used for decades with INR ranges from 2.0-4.0 with little ill effect. I have had conversations with his Cardiologist about this, and we are shooting for the 2.0-2.5 range for his INR. She is a very flexible and collaborative and encourages her patients to be their own advocate, but sometimes that is hard to find in a doctor. I hope you have a good and supportive medical team behind you.
As far as injuring yourself, since Mathias' last operation, he has fallen out of the back of a truck, cut his hands open, bonked his head, stubbed his toes, etc etc and has very little to show for it. Yes, his bleeding lasts a little longer, but nothing holding a bit of pressure to the wound hasn't fixed. He still heals as fast as he used to. We just keep extra bandaids and gauze around for any bumps and cuts.
I can't offer any advice on surgery while on warfarin, but can tell you that Mathias had to have an emergency surgery for cardiac tamponade about 6 days after his AVR with the On-X valve. He was on warfarin and was bridging with Lovenox at the time of the emergency surgery and his INR was 2.6 when they cut him back open. He did not need blood products (transfusions etc.) during that surgery. Since it seems that your procedures and surgeries can be planned for, I don't think you will have any problems, a doctor should be able to advise you appropriately.
I know how challenging the limbo period is, we've been there more times that we care to acknowledge. As far as picking the best valve, there are pros and cons to each, nothing is perfect and no one can really prepare you for the whole process as everyone handles things differently and has a different recovery process. Do your research, be armed with knowledge and questions, and get as much information from your medical team as possible until you feel confident in them before, during and after surgery. Many here have done this whole thing way more than once and have so much knowledge to share. I am hoping the best for you...these peeps are always here for comfort and questions!
You say your cardiac surgeon told you that you need yearly colonoscopies for lynch syndrome. You might want to check this with your colon doctor who orders the colonoscopies for lynch syndrome.
From what I've been told by my colorectal surgeon (in 2012), a colonoscopy alone requires no change in your INR. It's the biopsies and poly removals that require a lower INR. If you don't drop your INR, and during the colonscopy they discover tissue they want to biopsy or polyps to remove polyps, then you have to have to drop your INR and have a second colonoscopy.
Per On a side note how long did you go from first meeting with surgeon to surgery? My cardiologist made the appointment when I visited him to hear it was time for surgery. I was told not to wait more than 2-3 months to have it. It was a few weeks to the surgeon's appointment. We set the date. I went back to the cardiologist and surgeon each before surgery to ask questions and help with valve choices. I have hemorrhoids so I also visited a colorectal surgeon to see if warfarin would effect this condition. I dislike operations and didn't want any redos so I wanted mechanical. He did a colonoscopy and said no worries with warfarin. He told me what I mentioned before, that the colonoscopy is easy if you have a high INR, it's the polyp removal and biopsies that require intervention with your anti-coagulation.
From what I was told, you should not have to wait 3-months for a stable INR to drive a UPS truck. Your INR does not effect your driving. However, to carry the packages, you probably have to wait 3-months for your sternum to heal. This is pretty common for those that get their sternum cracked and do manual work.
Tom, I miss spoke if I said my cardiologist wanted a yearly colonoscopy. It is my gastroenterologist who wants them yearly because of lynch. I have had polyps almost every time. Only one year was I polyp free. As for UPS I drive the semi trucks and according to the DOT it says you must have your INR in check with a mechanical valve.
Sorry to steer you wrong Buckeye. You may want to check out any restrictions if you have a tissue valve. I've read that some with tissue valves are on warfarin for a few months after surgery.
Since it's your livelihood, you might want to meet with your cardiologist and ask specifically what it would take for them to deny or recommend certification given a tissue or mechanical valve.
pellicle
Professional Dingbat, Guru and Merkintologist
I've been in range >95% of the time since 2012 when I took management away from the clinic.
Bleeding has never been observably different to before warfarin, indeed my dentist comments that if I hadn't told him I was on warfarin he would never know by how my bleeding is during dental procedures.
My father (who was never on warfarin or blood thinners) from about the age of 50 started finding that he'd scratch or abrade his fore-arm while working and that would be an annoying bleed which would go on for some time (stopping and starting). It got worse as he aged. In my mid 50's I've begun to notice the same, and I can't say its different for me than I observed on him. I've discovered that the best way for me to handle these things now is to apply pressure with a small bit tissue paper (toilet paper is often convenient) moistened with some alcohol to disinfect and help settle the wound (we have methylated spirits here which I use in my camping stove). When the wound gets to be such that bleeding is more about a clear liquid that slowly reappears after swabbing, I apply a drop of Super Glue to it and spread that around a bit with the cap of a pen (or some other simlar smooth spatula that doesn't matter).
By the time that is ready to exfoliate by itself the wound is pretty well OK. As a bonus I don't have a scab (clotted blood) that inevitably catches on the sheets in bed or something and makes a mess there. I keep my superglue in a small zip seal bag in the fridge (where it seems to last years).
HTH
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pellicle
Professional Dingbat, Guru and Merkintologist
I loved your post, but one single point stood out worthy of comment
get him involved and taking responsibility ... just sayin
LoveMyBraveHeart
Well-known member
I reread my post and can see where my wording comes across as I do it all for him and he would be SOL without me making his meds up. This is untrue, thankfully. He participates in his own care and is an advocate for himself, so of course he can make his meds up, understands what dosage he is taking of each, and knows what each is for. I guess what I meant was that making his medications up myself is my way of contributing to his care when I can't contribute much more than that. It helps me memorize why he takes which pill, what they look like, what the dosages are, and ensure we always have a refill ready and wont run out of anything he really needs. Better two sets of eyes on it than one I think. I like to do it, so he let's me. That doesn't mean he can't or won't it all himself though, he is very independent. I hope that all make sense, I feel like I rambled.
pellicle
Professional Dingbat, Guru and Merkintologist
I wasn't meaning that level extreme ... but just that I believe that the patient themselves needs to be the one who's fired up and motivated to get it right ... like that's how I've lived my entire life about everything that's important to me (and long long ago I knew that my health was #1 on my list of importance, eventually my wife would become equal #1, but before I met her I mean).
And doing a double check on everything helps ... and rambling is totally fine ;-)
How loud is the clicking? I am most probably going with the on x as well. What level do you keep your inr?
Agian
Well-known member
I know it's there, I can't quantify how loud it is, as I have no reference to compare it to. When it comes from inside your body, it's not like the volume on headphones. I feel it more than hear it.
On-X has a rep for being quiet, but it's the luck of the draw. I don't think they can predict these things. I think this has more to do with perception and build.
I keep my INR around 3ish.
On-X has a rep for being quiet, but it's the luck of the draw. I don't think they can predict these things. I think this has more to do with perception and build.
I keep my INR around 3ish.
Agian
Well-known member
No probs. Ask away.
pellicle
Professional Dingbat, Guru and Merkintologist
Me too
Agian
Well-known member
Other people can hear it sometimes. When I went for my echo, the technician told me it was working, because she could hear it.... baahahaha.
I click therefore I am. I reckon a whole bunch of us should go to the opera (or some other wanky place) and sit in the front row. We could all look around annoyed and glare at people, like we don't know where that **** is coming from.
I click therefore I am. I reckon a whole bunch of us should go to the opera (or some other wanky place) and sit in the front row. We could all look around annoyed and glare at people, like we don't know where that **** is coming from.
rwsp768
Well-known member
I was the first person at St. Peter hospital to get a O-X here in Olympia. This was back in 2005 and every nurse had to come in with a stethoscope when the word got out that this was a quite valve with no noticeable clicking. Has stayed that way ever since.
Superman
Well-known member
I have a St Jude. It’s loud enough that I can’t be the tooth fairy at my house. The kids hear me sneak in.
