Need a Aortic Valve Replacement before year ends

[Dunwanted]

Forgot to add, can someone share me an amazon link or tell me where to buy a INR home tester i cant find them in amazon and where to buy the strips as i do not live in the USA it is a bit hard for me to find these things in my home country (Dominican Republic).

 

[ValveAdmin]

this has been very hard for me these past few days, everything was going so good with my life and now suddently i have to put a temporary stop to everything, but atleast im glad its something that has a solution

Prayin' for your successful surgery and quick recovery.

 

[pellicle]

Hi

pretty scared about bleeding issues, clotting etc with the mechanical valve, but it is what it is i will try and do my best to prevent it.

just to add to this, the bleeding is only caused by injury or illness. Warfarin does not cause bleeds, it only exacerbates them; it does not cause any harm to the vascular system.

You can find yourself at INR 9 (it happens to the best of us, like fellow Australian Ski Girl's Samon Mousse event) and you don't just rupture into blood like a scene from Carrie.

its just not like that... the scared feeling you have is a direct outcome of the medical system which wants to instil fear in you to motivate you. Its a blunt instrument and akin to beating someone instead of encouraging someone.

Now first I'll give you a reference (here) to my complete blog publication list of every article I have written (and will write) on warfarin and INR management, there is a lot to it but my purpose is not to overwhelm you, but to give you confidence (skim through it) that every situation can be dealt with (we call it 'managed') and as well a reference for future reading as you actually progress to self management and seek a reference for "how to" or "has someone faced this".

Lastly I want to say "on warfarin you can just go on with your life" some examples of me doing just that (and yes, all of these are post mech valve and of course on warfarin):







and this is 5km


from where I parked the car


so one more myth blown about being able to tolerate the cold.

Some good threads in the ACT forum here
https://www.valvereplacement.org/threads/i-love-working-with-young-people.887961/
https://www.valvereplacement.org/threads/freedom-to-roam-or-unusual-inr-testing-locations.877523/
There's a tone of stuff there to quell your fear and instil instead in its place a sense of control and ownership. Self testing gives you the ability to acquire knowledge about yourself and confidence springs from that knowledge

Enjoy

Best Wishes

 

[Dunwanted]

@pellicle thank you so much for the information a did a quick read, but will give a full read soon to you blog.

you´re like a database of mechanical valve and warafin, very intresting the part of having medical procedures done while on warafin as i will have to do some in the near future.

Saw your videos riding bike, this is somehting i really look foward too as i get tired way to fast doing any physical activity.

kinda looking foward to my operation, yet still very scared lol.

thanks for all the info and support.

 

[Sue]

Hello again, everyone thank you so much for the information i have done a lot of research as well everything looks like i will be choosing the mechanical valve, already have seen somevideos on INR home testing to be prepared and also saw @pellicle video on it.

pretty scared about bleeding issues, clotting etc with the mechanical valve, but it is what it is i will try and do my best to prevent it.

just started talking to the cleveland hospital to schedule and start doing some tests and then schedule my operation date, im hoping for a mini thoracotomy for this operation due to the scar and recovery time but will see what the surgeon recommends.

thank all of you soo much for all the information and support.

this has been very hard for me these past few days, everything was going so good with my life and now suddently i have to put a temporary stop to everything, but atleast im glad its something that has a solution .

Please let us know how it goes.

 

[pellicle]

kinda looking foward to my operation, yet still very scared lol.

thanks for all the info and support.

hey, glad I could help in any way. The reaction of being scared is totally normal, but that you are stepping up to the even and moving forward as you clearly are is a very positive thing.

Not everyone takes it like a human, some remain just whinging self absorbed snails pulled into a shell of denial.

I wish you all the best for the 99.9% probability that it will go well.

 

[tom in MO]

Being a whining, self absorbed snail, pulled into a shell of denial is a completely human condition experience by many if not most people.

 

[DJ-Rae09]

@Dunwanted good luck with your procedure! Choosing a mechanical valve is wise considering your age.
You'll bounce back quick at your age don't worry, stay positive and do what the doctors say!

I'm 42, I've just had my bicuspid valve replaced with a new mechanical valve, plus a graft installed to replace my aortic aneurysms. In my OHS experience, I felt back to normal around end of week 3 into week 4. I'm now week 9 out of surgery and feel like I was pre surgery but with a shiny new valve and a better functioning heart already

Once you get the hang of Wafarin, it's easy. If @pellicle offers you help with INR management take it.

See you on the other side!

 

[pellicle]

Once you get the hang of Wafarin, it's easy. If @pellicle offers you help with INR management take it.

thanks for the mention.

Actually I'd say to @Dunwanted that the offer is there if you choose it. My goal and role will be to help you to learn self management. To give you a structure to record data and a method of how to make decisions from that.

Best Wishes

 

[Dunwanted]

Thanks @pellicle, i will DM you if needed but first i have to read your entire blog about warafin use and control.

 

[pellicle]

i will DM you if needed

welcome ... and even if you had surgery yesterday it may be 3 months before your able to have a go yourself.

That's not the case in Australia, nor (say Thailand) where the following situation could occur
https://www.valvereplacement.org/threads/how-scared-should-i-be.888016/

My aortic valve was replaced Feb 3 this year, so I am about 10 weeks post op. Don't ask me anything technical I don't yet have enough knowledge to answer you.
Now to the real question. I am struggling to get my INR up to the recommendation of between 2 and 3. I have a local lab and test weekly. I started on 4mg of warfarin daily and through recommendations from my cardiologist I have been increasing at 10% so that I am now up to 6mg a day. My INR is sitting at 1.39 and won't budge!!!!

Moddey is now comfortably looking after his own INR with only very occasional interactions with me.

The basics are simple:

1. test
2. evaluate result and (if needed) adjust dose
3. make sure you take each dose

rinse and repeat. Mostly dose adjustments are minor if anything at all.

Hit me with any questions or "what the hell does this mean"s from the blog posts.

Best Wishes

 

[treichert0312]

Welcome dumwanted - like tommyboy I had the tissue valve in 2014 - failed in May so I had a mechanical valve On-X installed June - 3rd open heart surgery. First when I was a wee lad of 11 for sub aortic stenosis.
I have been very fortunate - 90 days post surgery feeling very good. Can sometimes hear the valve but no one else can - quiet.
You’ve heard a lot of good information and headed to Cleveland- best of luck to you.
If I knew then what I know now - mechanical valve 100%. Daily warfarin has stabilized for me after 40 days, dosage got dialed in to 2.4 INR level.

 

[Timmay]

Hi dumwanted,

I’m a fresh mech-valver too. Replacement about 4 months ago with an On-x mechanical. Yes, it’s scary going into it. Of course. It’s a big deal. That said, trust me when I say you got this. You do. I’m now back to running, lifting weights, shooting, working on cars, house stuff, etc. Although the operation is kinda a big deal, you’re gonna be surprised about how quickly you bounce back. The first week is a bit rough. But after that it just keeps getting better and better. For reals man. Seriously, you got this. You’re over 2 decades younger than me so you’ll recover quicker (and look at all that I am doing at 4 months). There’s tons of success stories here from Chuck C doing martial arts and hiking mountains quickly after surgery to ThatGymGuy returning to competitive powerlifting unbelievably quickly. You really do have this in check man. It’s gonna be good. And you’ll be yet another mech valver success story here.

Using “blood thinners” (I fracking hate that term because they do NOT thin the blood!!!) is not an issue. It is MENTALLY when you first start. Now it’s just something that I remember to take each day and test myself once a week (which is far less than a diabetic).

 

[Dunwanted]

Thanks for sharing your story, it really dos help me stay clam that life is going to be just as normal or even better, cant wait to so more active stuff without getting tired as fast.

Also wanted to ask, i need to remove my wisdom teeth should i do that before my valve replacement surgery or after?

 

[Timmay]

Get everything done prior to surgery that you can (so long as time and health allows). If you can get your wisdom teeth done and be fully recovered prior to surgery - then definitely do it now. JMHO.

Having an artificial valve - whether tissue or mechanical - increases risk during dental procedures and you have to go on antibiotics prior to all dental work. Additionally, if you’re on warfarin then you *may* have to adjust INR or do “bridging” using heparin. So - best to just get everything done prior to surgery if your situation allows for it.

 

[Chuck C]

Also wanted to ask, i need to remove my wisdom teeth should i do that before my valve replacement surgery or after?

Try to get it done before. Anytime one gets dental work with a prosthetic valve in place, there is a very small risk of endocarditis. The risk is small and is somewhat mitigated by anti-biotics to be taken before any dental procedure, but still best to get any dental work taken care of before valve surgery.

You will probably also need to get a dental exam and a signed letter from your dentist clearing your dental condition before your operation- I did.

 

[thomas999]

Using “blood thinners” (I fracking hate that term because they do NOT thin the blood!!!) is not an issue. It is MENTALLY when you first start. Now it’s just something that I remember to take each day and test myself once a week (which is far less than a diabetic).

Well when I cut myself and bleed, my blood sure looks very thin, much thinner than it was without blood thinners, to the point where it makes an impression. I don't know why you would hate that terminology, it's just a way people relate when they are taking warfarin. Also, taking Warfarin is a big issue, so much that it can save a life! Also, because you do not test your blood thinness as often as a diabetic takes their tests, doesn't mean it lacks importance. I have been taking blood thinners for 35 years now, I am used to it, but I would sure love the freedom of being off of it. I have been bruised badly from time to time and it is amazing how much swelling and internal bleeding one can have while taking this medicine.

 

[DJ-Rae09]

Also wanted to ask, i need to remove my wisdom teeth should i do that before my valve replacement surgery or after?

I had to remove one of my wisdom tooth prior to surgery, as the tooth had come through the gum and was prone to infection. My surgeon wanted it out.

So I'd say yes if you can. But get your dentist to provide a thorough check of you teeth/mouth before surgery.

 

[pellicle]

Also wanted to ask, i need to remove my wisdom teeth should i do that before my valve replacement surgery or after?

missed this

if the tooth is not infected and not causing issue, then either. Extraction is not actually as messy for infection as sub-gingival cleaning, because the tooth is removed (not scraped down in situ) and all the gunk is growing on the tooth

 

[Dunwanted]

Thanks for all information and feedback, finally arranging some test at the Cleveland Clinic to later set an operation date.

Im a bit scared about the cost since i have no international insurance, but i guess we will see, i think ill do the teeth extration depending on what they tell during the Tests.