At a CROSSROADS. (31 years of age)

[pellicle]

oh, and @Meanjellybean just in case you're getting hung up about which valve and why, this post is perhaps worth reviewing

https://www.valvereplacement.org/threads/aortic-valve-choices.887840/post-902334

 

[dornole]

No prior surgery for me, in fact I had no idea I had any heart issues whatsoever until I got pregnant with twins, at that point there was too much strain on the stenotic valve and I developed shortness of breath, CHF, pulmonary edema and coughing up blood by 27 weeks gestation. They did an early C-section to deliver the twins and after I recovered from that, the valvuloplasty. They think I must have had rheumatic fever based on the kind of damage but I don't remember any experience of that.

I guess I will see how long I can push things, I'm 53 now . . . I would probably still go mechanical because being young(ish), female, and having rheumatic heart disease all tend to cause lower valve life on tissue. But my new cardiologist (the old guy retired to research) says hey, maybe I will just keep going forever with the repaired native valve. That's definitely my vote but we shall see!

 

[Jamey T]

I have to agree with everything that has been said here. I have over nine years on my St. Judes aortic valve and the only change to my very active life is I have to take a very small pill every morning. That and now I can use the excuse that I am on warfarin to not eat green vegetables. If you like them, eat them, but I am not a fan of them, and my wife laughs when I say that because now I have an excuse, even if it is only in my mind.

In the nine years I have been on warfarin, I have a spreadsheet of every single INR test I have ever had. I offered to let my general doctor see it a couple of weeks ago, and he chuckled and turned me down. I also am one who self tests and self adjust my warfarin dose. My GP trusts me to do it even though the local warfarin clinic is not a fan of me doing that because "I don't understand what warfarin can do to you" (their words, here in the USA) even though they are not on it.

I was asymptomatic when I needed my aortic valve replaced, but I had known since I was 25 years old that it was needed. I made sure I lived an active life so that I would go into the surgery in as good of shape physically as I could. Well I am over nine years in and I am in my upper 50s and I have just quit downhill skiing because the local ski slope here got over priced for poor skiing conditions. I also kayak fish, I ride my motorcycle as much as I can and I also ride my bicycle often.

My post is getting very long, but the point is warfarin is not a hinderance to a very normal life. I actually feel sorry for a young coworker and a close cousin that are diabetic because of the way they have to live their life compared to the way I live mine. My life is much more normal than theirs, and this is something you will probably not hear anywhere else, so be at peace with your decision. I as well as everyone else here know firsthand the stress you can feel going in to this. I just wish I would have found this place before my surgery to help me feel at ease with my decision. I didn't come across this group until a few weeks after my surgery and I still check in quite often even if I don't post, just for people like you that are unsure of what to expect.

 

[Meanjellybean]

I have to agree with everything that has been said here. I have over nine years on my St. Judes aortic valve and the only change to my very active life is I have to take a very small pill every morning. That and now I can use the excuse that I am on warfarin to not eat green vegetables. If you like them, eat them, but I am not a fan of them, and my wife laughs when I say that because now I have an excuse, even if it is only in my mind.

In the nine years I have been on warfarin, I have a spreadsheet of every single INR test I have ever had. I offered to let my general doctor see it a couple of weeks ago, and he chuckled and turned me down. I also am one who self tests and self adjust my warfarin dose. My GP trusts me to do it even though the local warfarin clinic is not a fan of me doing that because "I don't understand what warfarin can do to you" (their words, here in the USA) even though they are not on it.

I was asymptomatic when I needed my aortic valve replaced, but I had known since I was 25 years old that it was needed. I made sure I lived an active life so that I would go into the surgery in as good of shape physically as I could. Well I am over nine years in and I am in my upper 50s and I have just quit downhill skiing because the local ski slope here got over priced for poor skiing conditions. I also kayak fish, I ride my motorcycle as much as I can and I also ride my bicycle often.

My post is getting very long, but the point is warfarin is not a hinderance to a very normal life. I actually feel sorry for a young coworker and a close cousin that are diabetic because of the way they have to live their life compared to the way I live mine. My life is much more normal than theirs, and this is something you will probably not hear anywhere else, so be at peace with your decision. I as well as everyone else here know firsthand the stress you can feel going in to this. I just wish I would have found this place before my surgery to help me feel at ease with my decision. I didn't come across this group until a few weeks after my surgery and I still check in quite often even if I don't post, just for people like you that are unsure of what to expect.

I appreciate the time you took to write and detail your experience. When you had were due for your surgery, did you have any other options?
Did you have to wait long from when you spoke to your surgeon?

I do feel alot more at ease now after finding this forum and hearing the peoples stories.

 

[Superman]

My GP trusts me to do it even though the local warfarin clinic is not a fan of me doing that because "I don't understand what warfarin can do to you" (their words, here in the USA) even though they are not on it.

That’s funny. I recall telling one clinician who was obviously quite young, “I’ve been doing this for over 20 years, how much experience do you have?” Only pulled that once. Now they tend to be much more cooperative with dosing. I tell them what I did or plan to do. They update my chart.

 

[Chuck C]

" I just wish I would have found this place before my surgery to help me feel at ease with my decision."

As a person who was fortunate enough to have found this forum before my surgery, which I will be having in about 10 days, I can say that it has been a tremendous help. The extremely valuable input from the members, like you and so many others, has helped to remove the unwarranted fear of warfarin, along with so many other areas that are extremely helpful in assisting one make the best decision and removing the fear going into surgery.

 

[Jamey T]

I appreciate the time you took to write and detail your experience. When you had were due for your surgery, did you have any other options?
Did you have to wait long from when you spoke to your surgeon?

I do feel alot more at ease now after finding this forum and hearing the peoples stories.

Yes, I was given the option of a tissue valve or an artificial valve, and I chose to go through surgery once instead of about every ten years. One thing that helped with my decision was one of the surgeons assistants was on warfarin and he told me pretty much what everyone here has already said. Taking warfarin is only a blip, not a life changing event. As it turns out, he was right.

I only waited a couple of days from meeting the surgeon to having surgery, partially because the aortic aneurism was getting worse and they wanted to get it taken care of.

Kind of a funny story, at least to me. About a year after my surgery I was visiting with my cardiologist and I mentioned that my sternum would "crack" like a knuckle will do. He said they could fix it, but "you know what that means". I told him it didn't really bother me that much, and he just chuckled. By the way, that "cracking" is also gone now.

 

[Chuck C]

Yes, I was given the option of a tissue valve or an artificial valve, and I chose to go through surgery once instead of about every ten years. One thing that helped with my decision was one of the surgeons assistants was on warfarin and he told me pretty much what everyone here has already said. Taking warfarin is only a blip, not a life changing event. As it turns out, he was right.

I only waited a couple of days from meeting the surgeon to having surgery, partially because the aortic aneurism was getting worse and they wanted to get it taken care of.

Kind of a funny story, at least to me. About a year after my surgery I was visiting with my cardiologist and I mentioned that my sternum would "crack" like a knuckle will do. He said they could fix it, but "you know what that means". I told him it didn't really bother me that much, and he just chuckled. By the way, that "cracking" is also gone now.

" I was given the option of a tissue valve or an artificial valve, and I chose to go through surgery once instead of about every ten years "

This is exactly my reasoning as well. I'm 53. Although it is not a certainty that I will never need another procedure, a mechanical valve will give me the best chance to avoid future surgeries. A tissue valve, on the other hand, will certainly lead to future surgeries.

And, warfarin, the biggest reason that people choose tissue over mechanical valve, turns out to be not such a scary thing when you listen to others share how life is normal on warfarin. Additionally, the possibility of a future warfarin related event is reduced drastically with self management of INR.

So, I'm going with a mechanical valve in 10 days.

 

[tom in MO]

That’s funny. I recall telling one clinician who was obviously quite young, “I’ve been doing this for over 20 years, how much experience do you have?” Only pulled that once. Now they tend to be much more cooperative with dosing. I tell them what I did or plan to do. They update my chart.

I had to have a special meeting with my cardio to allow me to self-dose since the clinic wouldn't allow it. When I used the example of diabetes and home testing and dosage, a light went on in his eyes and he said, "Yeah I know what you mean, my son has diabetes." The risks are comparable for insulin and anticoagulation therapy. Now when my warfarin prescription needs refill, his nurse calls and documents what my last INR was, what my current dose is, and I go onward.

 

[pellicle]

He said they could fix it, but "you know what that means".

what was the fix?
I reckon that at least @Warrick will be interested to hear

 

[pellicle]

Additionally, the possibility of a future warfarin related event is reduced drastically with self management of INR.

or worse, the sad irony of being one of those who comes out of a AVR having chosen a tissue prosthesis specifically to avoid warfarin and discovers they are needing it indefinitely. Of course AFib is a known reason, but interestingly:

https://jamanetwork.com/journals/jama/fullarticle/1456069

Current guidelines1-3 of anticoagulation treatment after bioprosthetic AVR surgery recommends 3 months of warfarin treatment. However, this recommendation is primarily based on results from 1 retrospective study4 with limited number of events hampered by the observational design as well as low power like all other studies within this scope.​

​

In this nationwide study, we investigated whether discontinuation of warfarin treatment within prespecified periods after bioprosthetic AVR surgery was associated with increased risk of thromboembolic complications, cardiovascular death, and bleeding incidents during a period of 13 years.​

​

that would make warfarin a bitter pill for those people

I've read of members here who have bioprostheses and are on warfarin because it was throwing clots.

 

[Meanjellybean]

The wait is hard... wish i could speed up the clock and have my surgery already...

I was at work sitting in a meeting when i get chest pain that starts to radiate to my neck. Lasting a while with a few extra issues like SOB and i think... best to get it checked by the GP.
I know my body pretty well and this was not my "normal" or baseline.. the GP does a ECG and compares with a old one on file.. looking a little more erratic.. right off i go to hospital..

After they run a few more tests (bloods and CT with contrast) things are looking ok.. they decide to keep me the night to see the cardiologist in the morning.. so here i am unable to sleep.

How quickly does aortic stenosis progress?
It took less then 12 months for it to go from mild to severe for me. That was in early Jan2021.. it would progress that much in 3 months, right?

 

[pellicle]

The wait is hard

It is, I can't offer more.

I'm sorry

How quickly does aortic stenosis progress?

Usually more rapidly at the end

 

[Meanjellybean]

It is, I can't offer more.

I'm sorry


Usually more rapidly at the end

Thanks @pellicle

Welp i got 2 people in my room that snore.. lol i swear they are in sync.. or they are in competition with each other haha

Is it possible for the surgeon to bring the date forward if a new echo shows progression?

 

[Meanjellybean]

Just want to ask about troponin?
What are levels that are considered for a event to have occurred?
Is Aortic Stenosis considered a cause to have a higher troponin level? Or is something happening and thats why the troponin is showing?

Any clarity is appreciated.

 

[EMJEF]

Hi,

what an eventful journey you’ve had so far. I had my mechanical valve (19mm St Jude) when I was 4 in 1986. I am now at a point where it needs replacing but that’s more due to the growth from small child to adult and going through a pregnancy. I plan on having another mechanical valve as I want to reduce to chance of further surgeries. I’ve taken warfarin for as long as I can remember and have not had many hiccups along the way. I have been self-testing for about 15 years which has made it just easier from a work point of view (I’m a teacher). I only have to go once every 6 months to the hospital to make sure my machine is still accurate against there’s. I am more than happy to take warfarin for the rest of my life as I do not feel there is anything I have wanted to do that I have missed out on. I definitely think there is misinformation out there about certain things to do with warfarin but I have not really experienced any issues in 34 years that haven’t been quite easily solved.

 

[Meanjellybean]

Hi,

what an eventful journey you’ve had so far. I had my mechanical valve (19mm St Jude) when I was 4 in 1986. I am now at a point where it needs replacing but that’s more due to the growth from small child to adult and going through a pregnancy. I plan on having another mechanical valve as I want to reduce to chance of further surgeries. I’ve taken warfarin for as long as I can remember and have not had many hiccups along the way. I have been self-testing for about 15 years which has made it just easier from a work point of view (I’m a teacher). I only have to go once every 6 months to the hospital to make sure my machine is still accurate against there’s. I am more than happy to take warfarin for the rest of my life as I do not feel there is anything I have wanted to do that I have missed out on. I definitely think there is misinformation out there about certain things to do with warfarin but I have not really experienced any issues in 34 years that haven’t been quite easily solved.

Thank you for sharing your journey. Reducing surgeries is a key factor and choice between the mechanical or alternatives.. to get a mechanical so young i find very interesting. Especially pregancy and wafarin as that can be very complex.
For me I do not want to be 50 and due for more surgery.. thats my choice and if i can avoid it with the mechanical then that is my best chance..
This community has helped to clarify all my concerns regarding warfarin and i am sure that once it is my turn, i can help someone else in their journey and remove the false perception and misinformation.

 

[Meanjellybean]

After my brief visit in hospital last week my surgical team looked over the discharge papers and report from the cardiac team and have decided to expedite my surgery.

I am booked into the preadmission clinic this monday and from there i have a green light for surgery. It is usually 1 or 2 weeks after preadmission.

I was relieved and freaking out at the same time haha.. happy i will soon have a date but now starting to hit home.. welp better sooner then later.
Keeping you all posted

 

[Chuck C]

was relieved and freaking out at the same time haha.. happy i will soon have a date but now starting to hit home.. welp better sooner then later.

I can totally relate. For me, I was very eager to get going with things and to get on with the healing. When it really got real was when I was in the pre-op area and then they said "It's time to go" and started wheeling my bed towards the OR. No turning back now.
Please keep us posted. We are with you!

 

[Chuck C]

After my brief visit in hospital last week my surgical team looked over the discharge papers and report from the cardiac team and have decided to expedite my surgery.

I am booked into the preadmission clinic this monday and from there i have a green light for surgery. It is usually 1 or 2 weeks after preadmission.

I was relieved and freaking out at the same time haha.. happy i will soon have a date but now starting to hit home.. welp better sooner then later.
Keeping you all posted

I want to share with you what worked for me:
1. Look forward with great anticipation to getting on with it and waking up in the recovery room. You will wake up in the recovery room.
2. Don't think about the details of the surgery. You are in the hands of gifted individuals who know what they are doing- you will be asleep as they do their magic.
3. Embrace your recovery with joy, expecting to feel a little better each day. Be excited about small victories, like getting your catheter out, or being able to get up and walk a few steps.
4. The days will pass quickly. Personally, I tried to stay ahead of the pain with pain killers. I know that some believe that the possible constipation is worth laying low on the pain killers. This was not my experience. Staying ahead of the pain made my recovery very bearable, and the constipation has many solutions- was never an issue at all for me. You may need to be a little assertive in asking for the heavy narcotics, if you feel that you need them. Having a PCA (patient controlled administration) was a game changer for me during days 2 and 3 in recovery, then it was not needed anymore.

Looking forward to hearing about your successful recovery!