choosing right valve

[geff]

Hi! I just had my aortic valve and root replaced with a mechanical valve + conduit a month ago.

As far as lifestyle goes, we have people here who ride motorcycles, do manual labor, and lift very heavy weights at the gym and they are doing just fine. A woman climbed to the top of Mt. Everest with a mechanical valve. Realistically, there aren't any absolute lifestyle restrictions just for having a mechanical valve. You should just be conscious of the risks of a given activity and take the appropriate safety measures, but people should be doing that anyway.

In terms of diet, cranberry juice and grapefruits are the only common things I've heard to avoid. Other than that, there isn't any dietary restrictions. The main recommendation is to just keep the amount of food you eat with Vitamin K in it (dark leafy greens, broccoli, herbs, etc) fairly consistent from week-to-week. You shouldn't avoid those foods, and in fact there is some evidence that consistent Vitamin K intake can help to stabilize INR levels. I don't drink but many people here do without any issues.

It seems to me that the perception of the risks and "lifestyle modifications" associated with mechanical valves is overblown by some people (and medical professionals.)

Edit: Also, personally, the ticking is very minimal and I don't find it to be a problem at all. If anything, it's reassuring. And this is coming from someone who is sensitive to certain sounds and sensory over-stimulation.

Thank you very much Deidra you have reassured me as to pretty well decide as to what valve to have, I have only joined this forum recently and already amazed of the helpful and kind people out there who take the time to reply and help new members, sadly I still have to wait a few weeks to have the operation and the fear seems to get worse and possibly even worse as it gets much closer to the time if there is any solution on how to try and ease the fear of the operation please let me know, again thank you for your reply and to others who have helped me

 

[pellicle]

nd the fear seems to get worse and possibly even worse as it gets much closer to the time if there is any solution on how to try and ease the fear of the operation please let me know

the only thing that helps me is to simply not think about it ... I just mark it in my calendar as a place I have to be at a time and that's it.

I don't do anything, so there is no preparation I need to do (if there is they tell me and I do that)

From a book called Dune (by Frank Herbert):

remember; how many things have you done and been through that are now mostly forgotten?



in 2 years this will also be like that.

Best Wishes

 

[Deidra]

Thank you very much Deidra you have reassured me as to pretty well decide as to what valve to have, I have only joined this forum recently and already amazed of the helpful and kind people out there who take the time to reply and help new members, sadly I still have to wait a few weeks to have the operation and the fear seems to get worse and possibly even worse as it gets much closer to the time if there is any solution on how to try and ease the fear of the operation please let me know, again thank you for your reply and to others who have helped me

The thing that helped me the most was reading the pre and post surgery sections of the forum, and seeing so so many people come out on the other side and recover just fine.

Other than that, I think it's important to keep in mind that you have done your part (seeking out medical care, gathering info & making decisions), and now it's all in the hands of the surgeon and their team, who do this every day and have had years of training and practice. For us it's a life-changing experience; for them it's another day of the week.

If you're having trouble relaxing at the hospital before the surgery, mention it to the surgeon/anesthesiologist. They can give you something for that, and it helps a lot. There's no shame in asking. Whatever they gave me made me totally calm as I was wheeled into the OR. Then it was lights out and it felt like I instantly woke up in the ICU.

 

[Deidra]

I just wanted to throw in that the "overblown" aspect comes from a combination of the following (add some weighting between 0 and 1):

• failure to take doses
• failure to take correct doses
• lying about this to the medical practitioner
• failure to mention taking other drugs (to the clinic) which can effect INR
• general slackness

I hear all the time from people I know (pharmacists and doctors who are trying to work with patients) that these are the main problems. If you are a patient who knows these things and wants to follow what's needed then

1. you're rare
2. doctors will love you.

Best Wishes

This is an excellent point. I often think about the rates of thromboembolism and bleeding events quoted in studies on mech valve patients, and how many of those are probably a result of the factors you mentioned. If everyone was in range 90%+ of the time, like many people here are, I imagine those rates would be much much lower.

Mechanical valves really do reward you for being diligent and honest. Anyone faced with the choice of what valve to get should be sure they can handle that kind of responsibility.

 

[Timmay]

Mechanical valves really do reward you for being diligent and honest. Anyone faced with the choice of what valve to get should be sure they can handle that kind of responsibility.

100% what pellicle said and then Deidra supported. 1000%

Use a pill box. Take it seriously. Set alarms on your phone (and even backup alarms on other devices if you must).

In over 2 years with my mechanical valve I have never missed a dose of Warfarin.

 

[mecretired]

I’ve had a st Jude grafted valve for 14 yrs and am doing great. Warfarin has been pretty much a nonissue. I test weekly and self dose for the most part. Good luck to you.

 

[3mm]

• failure to take doses
• failure to take correct doses
• lying about this to the medical practitioner
• failure to mention taking other drugs (to the clinic) which can effect INR

I've found it best to:

• write information in a message,
• read the message from the viewpoint of the medical office,
• rewrite your message for clarification,
• send the message,
• followup with a phone call in case anything needs to be clarified.

 

[geff]

Again thank you all for your wonderful support and time to respond if everyone in our world were the same as you all, we all would have the perfect world thank you so much. Everything you have shared helps me 100% I am so grateful to all of you

 

[ATHENS1964]

https://www.dicardiology.com/conten...eered-ease-use-implant-and-lifetime-patient-0

 

[geff]

Thank you athens1964 for all the information regarding the Avalus Ultra valve unfortunately the valve has only been approved for the USA and not in Australia as yet unless there is some type of miracle that it gets approved over here within the next 7 weeks then I'm still back to the other two choices thank you for your time and the information

 

[Bonnie Kieda]

hi i need to have my aorta valve replaced as its severely enlarged and the valves are not working properly and finding it very hard to decide whether a cow tissue or mechanical would be best both have problems i am 67 the mechanical you have to live with the ticking noise and also blood thinners and have also found out that very important to keep your oral health checked as if you were to get an infection it can cause a heart attack ,i already have receding gums so often i have to have a tooth pulled out or take antibiotic's for gum infections also there can be complications as to whether your body will accept the mechanical device then the cow tissue will only last approx. 10 maybe 15 years which would make me 83 years if I'm lucky to get to that age to have another operation my surgeon has suggested the tissue because of my age its very scary even thinking about the operation let alone trying to decide which one to have can someone please help me as i am will be admitted to a hospital soon thank you

I understand the difficulty in making such a major decision. My son had that dilema 16 months ago. He did a ton of research & talked to different people about the different valves.
He chose the cow tissue valve & is extremely happy with it. If I understand it properly, the valve is put into a very special solution before it's transplanted in place. The solution helps to keep it from calcifying & helps to maintain its durability.

A friend of his has the mechanical valve & said that he personally can't stand the loud ticking sound. He said it drives him crazy. Another person told him that he chose the cow tissue valve because the pig valve can tear easily.

I know as you stated, you must take medication for the rest of your life with the mechanical valve. My son now takes only a baby aspirin & a cholesterol tablet. He had high blood pressure for a very long time, even post-op he needed it. After completing cardiac rehab, he became very disciplined about exercising. That has made a huge difference in his life. His blood pressure is perfectly normal & he is off the BP meds completely. Exercise makes him feel energized both physically & mentally.

This isn't an advertisement but perhaps a good tip. Some of the patients at the rehab told my son about the gym, Planet Fitness. That's the gym he joined for $10.00 a month. He absolutely loves working out there.

Good luck to you! If you'd like anymore information, I know my son would be more than happy to talk to you.

I just discovered this site yesterday while I was looking up information about riding the new, wild roller coaster at Cedar Point after AVS. My son is going to ride it tomorrow. Hopefully he'll be okay.

 

[geff]

Thank you so much for taking the time and explaining to me in detail about the two valves originally i was leaning towards the mechanical valve but now after reading your response i am looking at the cow valve the only thing which sometimes put me back to the mechanical is the fact that the cow valve only lasts approx. 10 to 15 years if they could make a cow valve that lasts a lot longer then i`m sure everyone would not have this dilemma in making such a hard choice it is a tough decision i just hope on the day i make the right decision, you are very kind in taking the time to reply to my listing and really appreciate it thank you

 

[geff]

Hi Geff - I'm sorry to hear that you need heart surgery. However, I am glad you are researching this while you have time. There are many reputable places to learn about your options. Mayo Clinic and Cleveland Clinic are 2 major hospitals in the USA which have excellent websites with educational material. As Pellicle said above, search the valve selection threads on this forum. I'm sure there are other sources as well. Please use reputable sources of information, and not just random youtubers! Always ask yourself what scientific evidence a person has for what they say.

I do not know what is best for you; please remember that guidelines are GUIDELINES, and you need to consider your individual situation. For example, I choose a mechanical aortic valve 9 months ago at age 65. I am very active, and I worried about wearing out a bioprosthetic valve which could lead to a 2nd open heart surgery. Remember, not everyone will be eligible for a TAVR when they need a replacement valve.

thank you so much for the information i do worry about what valve as i`ve heard bad reports on both of them some dont last long yet others do very confusing i`m terrified of the operation and knowing that if i have the bioprosthetic valve i would need another operation at a later date i am going towards the mechanical valve and i know i would be fine taking the tablets but worried that the older you get your blood gets thinner with age so i`m not sure if the warfine would be an issue can you tell me are there really any life changes you have to make besides the warfine like food exercise and the ticking noise etc thank you

 

[pellicle]

I've found it best to:

Self managing just seems so much easier.

No communication needed.

 

[3mm]

geff said "...so i`m not sure if the warfine would be an issue can you tell me are there really any life changes you have to make besides the warfine like food exercise and the ticking noise ..."

I've always been conscious of my diet, so I Warfarin has not required any changes to my eating habits. The only impact of Warfarin on my exercise and/or lifestyle is that I am now more careful about small cuts. I am NOT bleeding out; but when my INR is running high (say, above 3.0), a small cut from a thorn bush or sharp edged grass will drip a little which makes a mess on sheets during the night. So I am a bit more careful when doing yard work, etc. I rarely notice the ticking noise; I only hear it in a very quiet room. Even then, after a few minutes my mind filters out the noise.

 

[pellicle]

but when my INR is running high (say, above 3.0), a small cut from a thorn bush or sharp edged grass will drip a little which makes a mess on sheets during the night

https://cjeastwd.blogspot.com/2021/06/superglue-wound-dressing.html

others will mention more commercial products available from your pharmacy, but I've always got at least a couple of tubes of that around.

 

[geff]

you guys are great and so helpful i`m tossing back and forth as they are both good but both have issues, i just hope on the day i make the right choice I hope there's not much prior to the surgery as i had to go and get my teeth done ooch three out and one had to have 6 stitches and in a lot of pain especially when i thought my teeth were okay nothing worse having teeth out when they don't hurt same as my valve i have no signs yet its seriously dilated

 

[newarrior]

Hi! I just had my aortic valve and root replaced with a mechanical valve + conduit a month ago.

As far as lifestyle goes, we have people here who ride motorcycles, do manual labor, and lift very heavy weights at the gym and they are doing just fine. A woman climbed to the top of Mt. Everest with a mechanical valve. Realistically, there aren't any absolute lifestyle restrictions just for having a mechanical valve. You should just be conscious of the risks of a given activity and take the appropriate safety measures, but people should be doing that anyway.

In terms of diet, cranberry juice and grapefruits are the only common things I've heard to avoid. Other than that, there isn't any dietary restrictions. The main recommendation is to just keep the amount of food you eat with Vitamin K in it (dark leafy greens, broccoli, herbs, etc) fairly consistent from week-to-week. You shouldn't avoid those foods, and in fact there is some evidence that consistent Vitamin K intake can help to stabilize INR levels. I don't drink but many people here do without any issues.

It seems to me that the perception of the risks and "lifestyle modifications" associated with mechanical valves is overblown by some people (and medical professionals.)

Edit: Also, personally, the ticking is very minimal and I don't find it to be a problem at all. If anything, it's reassuring. And this is coming from someone who is sensitive to certain sounds and sensory over-stimulation.

How do others regarding the ticking ? Would this be awkward if dating again as a single person ? Does it affect your sleep ? How is your INR doing ? Best Dave

 

[Deidra]

How do others regarding the ticking ? Would this be awkward if dating again as a single person ? Does it affect your sleep ? How is your INR doing ? Best Dave

My partner finds it reassuring. I don't think my roommate has even noticed it. It's very hard to hear without focusing on it in a quiet room, and only if I'm not wearing layers. I'd imagine if I was dating it would just be another cool fact/conversation starter.

It doesn't affect my sleep, I hardly notice it. My INR has been in range the whole time except this past week where it dropped out of range a bit, partly due to clinic incompetence. I upped my dose and it's on the way back up.

 

[3mm]

dropped out of range a bit, partly due to clinic incompetence

Is there a lesson we should all learn from this?

For example, I use a phone App to report my INR to the Coagulation Clinic. Easy to use, but no comment field. So, when my INR went a bit high because of antibiotics for a pulled tooth, I had to share this information with the clinic via a phone call.