26 & awaiting mechanical valve

[earlgrey]

Hi everyone! I was led here after some googling following an appointment with my cardiologist yesterday. I'm 26 and I've had OHS three times so far, as an infant, a young child, and a teenager. Not a fun time but it is what it is. This summer I'm going to have another surgery to revise some repairs that were done 20 years ago and address some arterial blockages (don't ask about specifics, I don't pay nearly as much attention to the specific anatomy stuff as I should).

I currently have a bovine valve that is now 10 years old, put in when I was 16. It's still doing fine but my cardiologist wants to replace it with a mechanical valve while they're in there to avoid having to do another OHS down the line, due to the already significant amount of scar tissue in there. I'm feeling very apprehensive about it but up until yesterday I was feeling even worse, imagining the prospect of a (probably very shortened) lifetime of major surgeries every decade or so. My cardiologist told me yesterday that after this next surgery, I probably won't need to have another OHS again in my life. That's a huge relief and frankly has majorly changed my outlook on my life and lifespan in a way that I have yet to process (I'm hoping to get a therapist soon). On the other hand, I'm not thrilled about having to take blood thinners for the rest of my life -- this sounds silly, but I love my tattoos and always wanted to get more throughout my life. However, reading all of y'all's posts about how it's much less scary than it sounds has helped. I'm otherwise healthy and I'm excited to have as much energy for hiking as I used to.

I might post this to the anticoagulant thread as well but if anyone has any tips for keeping on top of daily medication, that would be much appreciated. I have ADHD and I frequently miss the medication I'm currently supposed to be taking daily, although that one is much more mistake-tolerant than Warfarin.

 

[dick0236]

Welcome "early grey......you'll like this forum. Quite a few younguns on here as well as a number who were young when they got their valves and have lived into "older ages".

As for me.....I was only 31 when I got one of the first valves ever implanted. I still have that same valve.....it is now almost 55 years and the valve is still going strong........although at 86 other "stuff" ain't doing as well.

Warfarin is not a problem......but you will NEED to learn to take it as prescribed......it does not take prisoners....and can/will cause problems if you screw around with it.....been there, done did that. Buy a couple 79c pill boxes.....that will help keep you from missing or overdosing warfarin.

Stick around and become another of the "old farts" who have earned the right to say.......I'll be damned, I make it

 

[pellicle]

Hi and welcome

you seem to have had a similar surgical history to me, although you indeed take the prize with the number of surgeries before 28.

So that drove the first operations? Was it BAV?

I currently have a bovine valve that is now 10 years old, put in when I was 16. It's still doing fine but my cardiologist wants to replace it with a mechanical valve while they're in there to avoid having to do another OHS down the line, due to the already significant amount of scar tissue in there.

Either way that's excellent news and as long as you don't develop any aneurysm that's an entirely likely outcome.

On the other hand, I'm not thrilled about having to take blood thinners for the rest of my life -- this sounds silly, but I love my tattoos and always wanted to get more throughout my life.

I understand that feeling and wasn't entirely thrilled about it myself but really gave it probably no thoughts or dug into it. Which turned out for the best because I discovered after surgery (and commencement on warfarin) I found that what seems to me to be 90% of what's written in the public domain about warfarin to be wrong, bullshlt or just plain misguided fluff. The truth is that the drug is easy to manage now (has been for around 20 years) with the use of Point of Care machines (such as Roche Coaguchek) and those of us who care about our health have been taking advantage of these devices to really maximise our benefits and minimise (to as near as damit zero) the risks.

Here is a good blog post of mine to start you on the career of managing your INR.
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
I wrote that back in 2014 and have continued to round out my knowledge on it since then.

When you get started on it I recommend you begin testing weekly and use a sheet like this to document your INR and from that assist yourself to manage your INR in a methodical way. Feel free to copy that and use it as a template for your own weekly measurements. Reach out if you have any questions.

Best Wishes

 

[earlgrey]

Thank you both so much! I saved that spreadsheet template and I'll definitely ask my doctors about self testing. I have two jobs plus school so I'd hate to have to take more time out of my day to go to a clinic every week! I super appreciate you sharing all this information, it really is a huge comfort.

 

[Al3x]

Welcome! I too used to be terrible at remembering things like medication. I now have a daily alarm on my watch which I refuse to cancel until I've taken my dose, regardless of what I'm doing at the time. My watch never leaves my wrist and the alarm is very obnoxious.

I also keep a dose in a small pill container attached to my keys in case I'm out and about at pill time. I haven't missed or been late for a single dose yet. If I can do it, anyone can! Good luck with your surgery.

 

[pellicle]

firstly "that's the spirit"

secondly

I now have a daily alarm on my watch which I refuse to cancel until I've taken my dose,

every time I've missed a dose is because I've cancelled my alarm and moved on. Now that's not actually a "bad thing" because I usually catch it in the morning (when I simply take it).

Its good to be rigorous but some occasional indiscretions are really "just part of life"

Keep up the good work!!

 

[ValveAdmin]

Welcome earlgrey, and best wishes.

 

[Superman]

Welcome to the forum. Sounds like you could tell us a thing or two about going through and recovering from heart surgery! When you get your mechanical valve, lots of folks here with plenty of experience managing INR, navigating various heath care systems, working with Coumadin clinics, and home testing. Ask plenty of questions. If something doesn’t seem right, ask here. We don’t have all the answers, but we certainly have a sympathetic ear. Someone has probably dealt with similar. Of course work with your providers, but it’s good to know when it might be time for a second opinion.

I’ve lived my entire adult life on warfarin with 20 of those years prior to home testing being available for me. Approaching 32 years now and working on planning a rim-to-rim Grand Canyon hike with my wife. Want to get that in before I turn 50. Warfarin hasn’t slowed me down any.

 

[carolinemc]

Hi everyone! I was led here after some googling following an appointment with my cardiologist yesterday. I'm 26 and I've had OHS three times so far, as an infant, a young child, and a teenager. Not a fun time but it is what it is. This summer I'm going to have another surgery to revise some repairs that were done 20 years ago and address some arterial blockages (don't ask about specifics, I don't pay nearly as much attention to the specific anatomy stuff as I should).

I currently have a bovine valve that is now 10 years old, put in when I was 16. It's still doing fine but my cardiologist wants to replace it with a mechanical valve while they're in there to avoid having to do another OHS down the line, due to the already significant amount of scar tissue in there. I'm feeling very apprehensive about it but up until yesterday I was feeling even worse, imagining the prospect of a (probably very shortened) lifetime of major surgeries every decade or so. My cardiologist told me yesterday that after this next surgery, I probably won't need to have another OHS again in my life. That's a huge relief and frankly has majorly changed my outlook on my life and lifespan in a way that I have yet to process (I'm hoping to get a therapist soon). On the other hand, I'm not thrilled about having to take blood thinners for the rest of my life -- this sounds silly, but I love my tattoos and always wanted to get more throughout my life. However, reading all of y'all's posts about how it's much less scary than it sounds has helped. I'm otherwise healthy and I'm excited to have as much energy for hiking as I used to.

I might post this to the anticoagulant thread as well but if anyone has any tips for keeping on top of daily medication, that would be much appreciated. I have ADHD and I frequently miss the medication I'm currently supposed to be taking daily, although that one is much more mistake-tolerant than Warfarin.

There are times when the Mechanical valve needs replacement. Lifetime is not a guarantee of no replacement but might be years if there is no defect of the valve itself. It is rare but does happen. But most of us can say it has been years with the mechanical valve. And for the medication, has to be taken everyday. What you can do to manage taking meds everyday, you can invest in a timer for meds, or you can get a container that you can place meds for mourning and evening for one day, seven day, or 30 day. Good luck in getting a pill container. And good luck on surgery.

 

[tom in MO]

Hi everyone! I was led here after some googling following an appointment with my cardiologist yesterday. I'm 26 and I've had OHS three times so far, as an infant, a young child, and a teenager. Not a fun time but it is what it is. This summer I'm going to have another surgery to revise some repairs that were done 20 years ago and address some arterial blockages (don't ask about specifics, I don't pay nearly as much attention to the specific anatomy stuff as I should).

I currently have a bovine valve that is now 10 years old, put in when I was 16. It's still doing fine but my cardiologist wants to replace it with a mechanical valve while they're in there to avoid having to do another OHS down the line, due to the already significant amount of scar tissue in there. I'm feeling very apprehensive about it but up until yesterday I was feeling even worse, imagining the prospect of a (probably very shortened) lifetime of major surgeries every decade or so. My cardiologist told me yesterday that after this next surgery, I probably won't need to have another OHS again in my life. That's a huge relief and frankly has majorly changed my outlook on my life and lifespan in a way that I have yet to process (I'm hoping to get a therapist soon). On the other hand, I'm not thrilled about having to take blood thinners for the rest of my life -- this sounds silly, but I love my tattoos and always wanted to get more throughout my life. However, reading all of y'all's posts about how it's much less scary than it sounds has helped. I'm otherwise healthy and I'm excited to have as much energy for hiking as I used to.

I might post this to the anticoagulant thread as well but if anyone has any tips for keeping on top of daily medication, that would be much appreciated. I have ADHD and I frequently miss the medication I'm currently supposed to be taking daily, although that one is much more mistake-tolerant than Warfarin.

Take your warfarin at the same time every day so it becomes a habit. Carry your dose if you won't be home or have extra doses in your backpack, car, locker, etc. Use your phone to remind you of dosing and the testing. Being compulsive about warfarin dosing is a good thing

 

[KLS39]

Welcome to the forum. As I was looking at my second OHS last year, I was hoping for a TAVR. One because I was afraid of warfarin and two because it would be less invasive. When I met my surgeon he explained that a mechanical valve was the best choice at my age and would be most likely the last OHS I would need. That was all I needed to hear. I did miss one dose of warfarin about 6 months post surgery and then began setting an alarm on my watch/phone. I stop what I am doing when it goes off. I also will check my pill case before I go to bed just in case. I have a separate 7 day case just for warfarin and a 7 day morning/night for other meds. I now test at home and that is working well. I like being able to test when I am away and not have to revolve lab testing around travel. I found a anticoagulation journal that I use to record my doses and INR. I also document if I wasn't feeling well or if I had trouble collecting a good sample. Remember you should dose to your diet and not change your diet to your dose. Best wishes.

 

[TomM]

I had my 4th OHS in 2020 and had a mechanical valve inserted. I had a homograft previously. For warfarin, like others I find setting a daily alarm sticking to that time works well as well as using a weekly pill box. I attended a warfarin clinic in the hospital where I had the surgery for about a year and thought that was worthwhile while I got used to taking warfarin. I bought an INR self check device and I'm using this now submitting my readings to the same warfarin clinic where they then let me know if I'm to change dosage until the next check.

In February of this year I started cardiac rehabilitation ( delayed since surgery mainly due to covid) and I would recommend this if available to you at some point during your recovery.

 

[jamessd]

Just piggy backing on this as another newbie here, as our scenarios are similar albeit you have had more surgeries than I. It is always reassuring to hear from younger generations as, like last time, I feel like i'm the youngest one on the ward.

I had my bicuspid AV and ascending aorta replaced with a tissue valve 8 years ago at 21, following a balloon dilatation at 18 months. I have mentally blocked the issue of repeat surgery for 8 years and it's now taken me by surprise, I suppose I was too optimistic.

I am now 2 days ahead of my next OHS, waiting anxiously on the ward. At my consultation a month ago the surgeon came out with 'did we not discuss the ross procedure last time' (no, we didn't) then went on to subtly recommend a mechanical valve this time. In the time it took me to process this and research the ross procedure (as I was so anxious I didn't even ask) I was back out the door and on the way home. They have always stressed it is my choice, so I am now facing up to reality and doing my research.

Mechanical seems favoured by most and I too am concerned about correctly managing INR. Thank you to pellicle for the spreadsheet which i've downloaded. I have frequently read concerns from people that are 'active' and so on when discussing warfarin usage, but they don't state why that's a potential issue and what the risks are. I would like to be more active, and improve my general health, so i'm keen to know what this is about in case it's going to affect my decision (tomorrow!), if anyone can shed any light i'd appreciate that.

 

[pellicle]

Hi

but they don't state why that's a potential issue and what the risks are.

well its my working theory that "they" don't really know either. Its also my working theory that "they" don't really want you to stray from the middle of the court (thinking tennis or squash court here) and remain close to the range of 2.5

"They" are usually inept handlers and are divided into two main groups (with some blurring of the lines in the middle)

1. medical specialists with utterly zero experience in maintaining INR and zero follow-up or long term handling of anyone (let alone anyone under 50)
2. clinicians with very low training in science, not much more in the facts of what they do and also with no actual experience in monitoring individual people over time

both groups lack an ability to think in statistical terms

Pretty sad IMO but that's "Usual Care"

They use fear rather than information because they know from being told it that fear is a motivator (which it is) and that most people can't grasp the information (which reflects on how engaged they are at teaching it IE they aren't).

So, here's a "worst case" scenario (and perhaps there were some other factors like being obese and slovenly already? but hard to actually know as such important factors are usually not mentioned)

https://www.valvereplacement.org/th...-compliance-with-an-on-x-aortic-valve.888128/
I could write a lot about how to manage INR but I'd prefer to just point you at my blog to read (read it a few times, take your time, refer back to it) and to actually provide assistance and guidance to you over time. This results in you "getting the hang of it" pretty quickly.

I would like to be more active, and improve my general health, so i'm keen to know what this is about in case it's going to affect my decision (tomorrow!), if anyone can shed any light i'd appreciate that.

I would say that you can (and should) keep active, eat healty (ditch the diabetes causing foods as a primary diet and reach for ... well normal food, what is called "whole foods" in the USA (which is weird to me but there it is))

Eat greens

https://neurosciencenews.com/vitamin-k-dementia-20321/
because:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4998867/

...the available evidence does not support current advice to modify dietary habits when starting therapy with VKAs. Restriction of dietary vitamin K intake does not seem to be a valid strategy to improve anticoagulation quality with VKAs. It would be, perhaps, more relevant to maintain stable dietary habit, thus avoiding wide changes in the intake of vitamin K. Based on this, until controlled prospective studies provide firm evidence that dietary vitamin K intake interferes with anticoagulation by VKAs, the putative interaction between food and VKAs should be eliminated from international guidelines.​

 

[pellicle]

oh and @jamessd also don't forget to live life normally when you get out, take steady steps (but don't over step) towards return to health. I'd expect that at 6 months you'd be acting like you were before surgery, indeed before you felt sick.

As strange as this sounds I'd say that the best thing that ever happened for my life and its directions was having BAV and having had OHS

Some of my channel to watch while you're in the ward









Live long and prosper ... and watch out for the snakes
*note: viewer discretion advised: content contains coarse natural language when confronted with a highly venomous snake.



Best Wishes

 

[Amy]

I have frequently read concerns from people that are 'active' and so on when discussing warfarin usage, but they don't state why that's a potential issue and what the risks are.

Whenever I let my INR get above 3.5 or so, I tend to bruise. I bump my knee or something and forget about it, but the next day it’s huge and looks awful and takes a long time to go awaand is painful to the touch, which bruises didn’t ever used to be, for me.

I’d love to go skiing like I used to; I mean really really fast - but just imagining what the bruise would be like if I ever caught an edge, has stopped me trying so far.

Having said that, since staying on the low side of my range, I have no bruises at all. So as long as my INR was closer to 2.5 (than 3.5,) I’d probably be fine. I’d definitely check it before heading out to the ski hill though.

(Whether these bruises can cause long-term damage that one needs to worry about, I don’t know.)

I’m the worrying type, though. I actually bought pre-cut salad packs for the first couple months after surgery so I wouldn’t risk cutting myself with the knife. Ha ha ha! Now I can laugh at my poor, past vulnerable self.

You’ll be fine on Warfarin. Just set alarms to remember to take it, check your INR weekly (with a homedevice likeCoaguchek, if possible); keep your greens intake consistent; check for interactions before starting a new drug, & ask questions here on the forum. : ) It really comes to be not such a big deal at all.

 

[Amy]

@jamessd

There are a lot of posts and threads about deciding between a mechanical valve and a biological one and/or the Ross procedure. Look for them to help you make the right decision!

Yoy do have to be able to remember to take the Warfarin every day though, if you go with mechanical. To me, it’s unbelievable that someone could (be so irresponsible as to!!!) forget to take it, thus risking a stroke, but I know there are (a lot of) such people out there.

If you commit to making it a habit though, (and you can, with the help of alarms on your phone and a visual reminder of your pill bottle or case) it’ll become like any other habit - easy.

 

[jamessd]

Thanks, i've been reading those threads to help my decision.

I should be fine remembering the pills, i've been taking ramipril & bisoprolol daily since my last intervention. I am just looking to understand all the pro's & cons, hopefully the consequences of any cons is enough to get me on top of my general health.

Another worry is that I had a (self diagnosed) suspected burst hemmorrhoid, or some kind of bleeding down there, last summer which I didn't follow up as it sorted itself within a day. At the time I didn't expect to be facing this decision soon after, otherwise I'd have wanted some closure on that before getting this far. I will of course be discussing that with my doctor before going down, I suppose the only saving grace is that i'll be able to see if i'm bleeding there again in the future.

 

[jamessd]

I could write a lot about how to manage INR but I'd prefer to just point you at my blog to read (read it a few times, take your time, refer back to it) and to actually provide assistance and guidance to you over time. This results in you "getting the hang of it" pretty quickly.

I will do just that, and note the post re colonoscopy which is probably going to be relevant to me in the future.

 

[pellicle]

I will do just that, and note the post re colonoscopy which is probably going to be relevant to me in the future.

Well there is more to discuss on that, I'm compiling something to be published soon about that.