At a CROSSROADS. (31 years of age)

[Meanjellybean]

Hello All,

Found this community the other day and have been reading many of the stories and advice that has been given regarding cardiac issues.
I want to share my story and where I am at currently.

Brief history:
I have congenital heart disease and was born a twin (identical). The best way to describe it is my brother was the Arnold Schwarzenegger and I - the Dani DeVito. I reside in Australia, live a pretty standard life, wife with two young kids and two dogs. Work full time as a Service manager for disability house and studying to be a Occupational Therapist (3 year).

I have a bicuspid aortic valve (current issue)
My fight for life started early with the following surgeries:
- 6 weeks of age - Coarctation repair of Aorta
- 2 years of age - resection of sub-aortic membrane
- 3 years of age - resection of sub-aortic membrane (redone)
- 3 years of age - laryngeal cleft - repaired
- 4 year of age - fundoplication and PEG feeding tube inserted. removed PEG at 6 years of age.
- 20 years of age - resection of sub-aortic membrane (guy kept coming back!)

Thankfully after removal of the PEG i was able to live a typical life with out any long term medication. I am currently 31 years old and have started to have symptoms daily such as SOB, fatigue, palpitations and then also had the one episode of chest pain and emergency rush to the hospital (1 year ago).

Currently the pressing issues:
- My bicuspid aortic valve has progressed from moderate to severe
- 4.3 m/s peak velocity
- 70 mmHg peak with mean of 40 mmHg
- Valve area 0.8 cm2
- I have left bundle branch block and sinus rhythm (

My cross road options 1:
Surgeon says best option is to have the mechanical heart valve and living on warfarin for life

Benefit: no symptoms any more, able to live typical life and normality.
Cons: living on warfarin and lifestyle changes, heightened risk due to 4 sternotomy, extra risk if there is a need to redo the subaortic membrane if it returns (hope not)

My crossroads option 2:
Another surgeon says he would like to do a valvuloplasty to buy time (typically lasts 3 - 5 years). Keep repeating the valvuloplasty procedure until I am around 50 - 55 years old and by then I would have a tissue valve or similar. Once the tissue valve breaks down I would have a TAVR inserted or small procedures to keep repairing as needed. '

Benefit: no warfarin, no lifestyle changes, less invasive
Cons: may lead to emergency surgery if balloon overstretches and causes perforation or excessive regurgitation. have to keep repeating, may alleviate symptoms periodically, still have to live moderated life once symptoms return.

That's briefly my story. I would like to get any feedback on what living on warfarin is life? Also, anyone had option number 2 presented to them? anyone who had a valvuloplasty and how long it last on a bicuspid aortic valve?
I know I am a complex case and not looking for you to make a decision but would like to hear peoples real life experiences, the good and the bad.

Many thanks in advance
Andy

 

[pellicle]

Hey Andy

Surgeon says best option is to have the mechanical heart valve and living on warfarin for life

I'm in Queensland, while my history is not as extensive as yours I've had OHS 3 times now, first at something like 12 (I get confused) which was a repair, then at 28 (a homograft) then at 48 a mechanical and an aneurysm repair. I'm now 57.

to be honest probably nothing you've heard about warfarin has been reported to you properly. I was sufficiently motivated about this level of ******** that I wrote this blog post
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
reach out by personal message and I'm happy to chat about things ...

your option 2 has more cons than you think and option one is not as bad as you think.

Which State are you in?

 

[Meanjellybean]

Hey Andy



I'm in Queensland, while my history is not as extensive as yours I've had OHS 3 times now, first at something like 12 (I get confused) which was a repair, then at 28 (a homograft) then at 48 a mechanical and an aneurysm repair. I'm now 57.

to be honest probably nothing you've heard about warfarin has been reported to you properly. I was sufficiently motivated about this level of ******** that I wrote this blog post
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
reach out by personal message and I'm happy to chat about things ...

your option 2 has more cons than you think and option one is not as bad as you think.

Which State are you in?

That sounds like a pretty crazy journey for you also. Good to hear im not alone in this experience

Im in NSW.

Happy to hear more pros and cons of each if you would have the time to detail.
Ill have a read of the link.

 

[pellicle]

Happy to hear more pros and cons of each if you would have the time to detail.

happy to listen and insert my own experiences.

I know a few other New South Welshman whom I've discussed things with, and who've had surgery and are pretty much just living normal lives.

I live a "sort of" normal life as an elderly heart condition warfarin patient







send me a "message" (the little envelope icon) here and I'll call or you can call me (don't put your number in public)

 

[pellicle]

just while its quite I'll also add that since my surgery in 2011 (when I commenced warfarin therapy) I've travelled as I wished and the modern INR measuring tools are compact and allow you to take it on the road (including my mates workshop).

In Australia self management is entirely possible and these tools allow you to live an entirely normal life. Warfarin is not the ball and chain it once was.

I've been skiing back in my beloved Finland

enjoying beer and sausage in Prague

Ireland, Sweden ...

I eat greens (just had a large curry of butter chicken with spinach {not a trad combo but so?})

Life is pretty normal ...

 

[dick0236]

Hi Andy and welcome. I was also 31, with two small children, when I had Aortic Valve Replacement surgery with a mechanical valve. My sons are now old men.....I now have a handful of great grandkids.....and the same artificial valve. Warfarin, in the olden days, 1960s-70s was a guessing game and a pain in the ***......not so anymore. It's a pill a day with a simple finger stick once every week or two with no hindrance to my life, lifestyle, or diet.

PS: I wouldn't trade my life with my mechanical valve for the life you have described with all the multiple procedures you've outline. That said, do your homework and make a decision that works for you. I thank God there were few if any, options in 1967 better than a simple valve replacement.......that the docs told me would last 50 years. Actually, it has laster over 53 and seems to be going "strong".......but, alas, other problems that come with old age are beginning to show up......but that's to be expected at age 85

 

[Meanjellybean]

just while its quite I'll also add that since my surgery in 2011 (when I commenced warfarin therapy) I've travelled as I wished and the modern INR measuring tools are compact and allow you to take it on the road (including my mates workshop).

View attachment 887610

In Australia self management is entirely possible and these tools allow you to live an entirely normal life. Warfarin is not the ball and chain it once was.

I've been skiing back in my beloved Finland
View attachment 887611
View attachment 887612

enjoying beer and sausage in Prague

View attachment 887613
View attachment 887614

Ireland, Sweden ...

I eat greens (just had a large curry of butter chicken with spinach {not a trad combo but so?})

Life is pretty normal ...

Thats very encouraging to see you are able to travel. Also the explaining of self monitoring in your blog was great.
I do enjoy a excel spread sheet ahah. I am a stock trader in my spare time, so charts are like gold to me. I will look into this once i have a date for surgery.

The at home kit i am interested in.
Do we get any money back on medicare? For the cost of ongoing strips? Or on a health fund.

Also does the warfarin cost alot?

How long would it take roughly after surgery to get the INR levels right. Are you still on pain killers the whole time?

Also, I read that wafarin may lead to bleeding if INR levels are too high. What does that look like and mean?

 

[Meanjellybean]

Hi Andy and welcome. I was also 31, with two small children, when I had Aortic Valve Replacement surgery with a mechanical valve. My sons are now old men.....I now have a handful of great grandkids.....and the same artificial valve. Warfarin, in the olden days, 1960s-70s was a guessing game and a pain in the ***......not so anymore. It's a pill a day with a simple finger stick once every week or two with no hindrance to my life, lifestyle, or diet.

PS: I wouldn't trade my life with my mechanical valve for the life you have described with all the multiple procedures you've outline. That said, do your homework and make a decision that works for you. I thank God there were few if any, options in 1967 better than a simple valve replacement.......that the docs told me would last 50 years. Actually, it has laster over 53 and seems to be going "strong".......but, alas, other problems that come with old age are beginning to show up......but that's to be expected at age 85

Thank you for the encouraging story.

I have to admit when i first was told about my valve failing i was so misunderstood. I thought it was a death sentence after 10 to 15 years. How wrong i was.
I was not a stranger to cardiac issues but i thought my subaortic membrane had grown back. Which would be a familiar issue and i know what they look like for recovery. I didnt think my valve was the issue.
Hearing the success stories and way of life after is so helpful.

 

[pellicle]

Hi

Thats very encouraging to see you are able to travel.

the fact that you even think that is encouraging is a testimony to how miserably the whole process is communicated. Top points are awarded to the medical system for so systematically by just poor wording instil a feeling in so many patients that "your life is over, but we'll keep you breathing"

Also the explaining of self monitoring in your blog was great.
I do enjoy a excel spread sheet ahah. I am a stock trader in my spare time, so charts are like gold to me. I will look into this once i have a date for surgery.

happy to help

Do we get any money back on medicare? For the cost of ongoing strips? Or on a health fund.

Nope, nothing. But to me it was gold because after my surgery in 2011 I was put on to a lab and signed up with a Medicare clause to allow labs to essentially bulk bill the government where you pay (then) $250 up front and nothing more for the rest of your life. See Rule 3 exemption.

This seemed the only way forward and I quickly grew to hate it. Why? Well as you may know pathology labs are sprinkled all around, and when you go there (say, on the way to work), you are faced with two choices: be there early and jockey for position with all the pensioners (and be ruthless or they'll just walk in front of you every time) and inevitably spend an hour there. Then I still got to work late. Then you have to wait for 2 or so days for the Lab to call or SMS you with your INR results. Then if there is anything which they feel needs to be altered they'll dose you and schedule another test.

I don't think I ever had it run smooth.

Also does the warfarin cost alot?

if you shop at somewhere like Chemist Warehouse its about $7 a bottle of 50 pills. I keep stock of 5, 3 and 1's here so I can make my dose as I determine from my reading. Its typically around 7mg per day

How long would it take roughly after surgery to get the INR levels right.

it depends who's doing it ... they never quite got it right, and you can see my typical results here
http://cjeastwd.blogspot.com/2017/01/2016-inr-data.html

Are you still on pain killers the whole time?

is this a joke? What kind of messed up view of the outcomes do you have there? No, I'm not on pain killers for the rest of my life.

Also, I read that wafarin may lead to bleeding if INR levels are too high. What does that look like and mean?

another of the myths, man maybe I should write a book. Lets put it this way when I go to my dentist for a scale and clean he often observes that I bleed at my gums less than most patients who aren't on warfarin.

Really, call me ... clearly we've got more to talk about than I care to type.

 

[dick0236]

..........Thank you for the encouraging story
I have to admit when i first was told about my valve failing i was so misunderstood. I thought it was a death sentence after 10 to 15 years. How wrong i was.

LOL, I thought I would get about 20 years. I thought that it was a "one time surgery" and if, or when, that initial valve "wore out" I would die. Doomsday thought are very normal especially when you are young and get "gut punched" with something that is not supposed to happen to a young person.

This surgery is only a "speed bump".....it is not like driving off a cliff.

 

[Meanjellybean]

is this a joke? What kind of messed up view of the outcomes do you have there? No, I'm not on pain killers for the rest of my life.

haha i should of put in a little more detail in that statement. I thought about my question in my head but didn't put it into the words well. I was talking about post OP and having to be on pain relief to manage the short term pain. Does this typically interfere with INR? and would they continue you on pain relief even though it is interfering?

Ill send you a private message soon

 

[pellicle]

Hi

I was talking about post OP and having to be on pain relief to manage the short term pain.

ahh ... well myself I wasn't taking much more than paracetamol. The chest is quite sensitive soon after surgery (first few weeks) but by a week I only felt "slammed down" and pain only happened when coughing, sneezing or laughing.

Does this typically interfere with INR? and would they continue you on pain relief even though it is interfering?

well again this is difficult to be sure, but if you're talking about the immediate post op situation its not even on the radar. Plus typically you're also getting some heparin.

There is a massive misunderstanding about anticoagulation therapy in the community. You don't suddenly have a stroke and die the second your INR goes low.

I think I covered this pretty well in this specific response
https://www.valvereplacement.org/threads/my-self-management-results-for-2020.887821/post-901804

 

[Meanjellybean]

LOL, I thought I would get about 20 years. I thought that it was a "one time surgery" and if, or when, that initial valve "wore out" I would die. Doomsday thought are very normal especially when you are young and get "gut punched" with something that is not supposed to happen to a young person.

This surgery is only a "speed bump".....it is not like driving off a cliff.

Thank you for normalizing the feelings. Yes, 100% went through these emotions. And the googling* does not help at all really.
Love the analogy.

 

[pellicle]

mainly because @leadville seems to chortle a bit



my other scooter

 

[Superman]

Meanjellybean,

Welcome to the forum. That’s some history you have. Glad you’re getting some good answers.

Can’t really add too much to what’s already been shared. You seem to be getting the message that the people who are most afraid of warfarin far those that have never taken it.

I’ve been taking warfarin since I was 17; for over 30 years. My family and I do road trips all over the continental United States. I’ve been less limited since having my valve replaced than I was before. Married. Five great kids. Other than for weight, I never think about diet. Folks with allergies and diabetics have a lot more to worry about than we do. I self test and work with my provider on dosing.

Good luck on your journey. Looking forward to updates. Looking at what you’ve faced already, I feel like this will be the easy part.

 

[Meanjellybean]

I just booked in my operation for the AVR with my Surgeon. As I am on public patient I will have to go on the short wait list.
How long do you usually wait?
The surgeon said he uses the carbomedics valve.
Read a few articles and it looks rather similar to St judes valve with similar expectations.
Anyone had experience with the carbomedics valve?

I was hoping for a On-x but he did not offer this valve.

Also Thanks Superman - sounds like your journey has been amazing. 5 kids! I have 2 kids and i cant keep up with their energy levels..

 

[dornole]

I had a mitral valvuloplasty at age 35 to address severe stenosis. My cardiologist came out in the waiting room and told my hubs “well that went about as bad as it could without killing her” (he’s a laugh a minute, my doc). Despite his despondency at his lack of perfection I have been living my life for 18 years now with no need for a repeat. They told me to expect regurgitation to get a degree worse and that happened, I now have mod or mod severe regurgitation but so far no symptoms or damage to the heart indicating surgery. I just get yearly echos and take a full strength aspirin daily.

The risk of a screw up and needing emergency replacement is real but to me, since I was in a major heart hospital with access to emergency heart surgery, it was worth it to buy time and it for sure worked out for me. My stenosis is creeping back up a bit (I have rheumatic heart disease) but so far so good. Original cardiologist said repair would probably last 7-10 years, new guy said it might last forever at this point. The feasibility of a valvuloplasty repeat isn’t good for me because they can’t afford to have the side effect of more regurgitation to treat any stenosis.

This is all for mitral of course, I don’t know about aortic but hope this helps nonetheless.

 

[dornole]

Oops, just saw you booked avr. Never mind! Best of luck!

 

[Meanjellybean]

Oops, just saw you booked avr. Never mind! Best of luck!

Hi Dornole,
Thats not a statement you want to hear coming oit of a operation lol.
Thank you for your lived experience.
Did you have any prior surgery or scarring of the heart before the valvoplasty?

So 18 years is a very long time. Do you plan to transfer to a tissue valve now?

Yes i have decided the mechanical mainly due to my history and fact that i have many scars already on my heart which will make stretching a higher risk. That and my own personal reasons.

 

[pellicle]

The surgeon said he uses the carbomedics valve.
Read a few articles and it looks rather similar to St judes valve with similar expectations.

with modern bileaflet valves, the valve choice makes less difference than the makers would like you to think. I would suggest that the ones with the biggest marketing campaigns have a reason why they spend that money ... and its not about you.