Early 20's, going to have a second OHS to replace my aortic valve

[Atreus]

Good day everyone! I am a 21 years old guy, diagnosed with BAV and diabetes T1 both at 12 years old, who had a valvuloplasty 1 year and 6 months ago. At my last echo I was informed that I must have second OHS in the summer for a replacement of my aortic valve with a mechanical one, I know about taking anticoagulants, keeping my INR in range, and having a balanced diet, but I am scared, terribly scared, I am afraid that I might suffer some complications during the second procedure, scared that I am going to miss out on the once per month party time where I get most of my fun time, that I can't exercise anymore, having an active lifestyle or keeping people close to me, also I am scared because I may have a short and painful life and I am pretty tired of pain for the next 100 years. I will be glad if anyone has a support guide on what can you still do with the mechanical valve, what should I avoid and some encouraging words to reduce my anxiety would also work well.
And I have one more question can you live a "normal life" like having fun drinking, motorcycling, playing football, and running with this illness?
Thank you in advance and sorry for my terrible English.

 

[tommyboy14]

Hello,

I had two OHS now. The good news is that according to the statistics the mortality risk of surgery is low.

If you look at EuroScore Website - calculator
That website gives the risk of surgery based on your characteristics, the risk is between 0.5-1.5% depending on whether you count valvuloplasty as a surgery. (I think this isnt OHS). Your actual risk will be even lower than that because of your very young age relative to the age of people getting the surgery.

Now with respect to your other questions, I will summarise quickly:

- Life expectancy: There is a lot of very good evidence to suggest that your life expectancy after valve surgery is normal (like not having the surgery), especially if it is for genetic (biscuspid valve) and not life style reasons. There are older studies out there which claim that mechanical valve implementation leads to shortened life expectancy. Most of these studies have both patients that needed surgery due to genetic and life style reasons, and also other diseases. Pretty much all of these studies come from an era when warfarin management was done by a doctor, while nowawadys you can self-manage. All of the self-management evidence shows that you can half the risks. So I wouldnt worry at all about this in your case.

- Activity and what you can do: Almost anything within reason. I.e. Probably no more boxing or American football, i.e. any sport where you could get a hard knock to the head. But other than that there are no restrictions. There is a famous case in Switzerland of a Lady doing Mount Everest with a mechanical valve.

- You are doing the right thing by getting a mechanical valve at your age. I had tissue first, only lasted 8 years and needed to get a second OHS. This took 6 months out of my life. Time I will not get back. One and done with the mechanical is the best choice.

Hopefully @Superman will weigh in. I think he surgery at a similar age to yours. and @dick0236 is has lived with his mechanical valve for over 50 years now.

 

[tom in MO]

I've had a mechanical valve for >10 years and live a normal life. You can motorcycle, drink, play football, etc. You will be on an anticoagulant that will make your blood take about 2x more time to clot. So you might not want to get falling down drunk and stay away from headers in football. Outside of surgery, there's nothing painful about living life with a mechanical heart valve.

Don't worry - be happy, because w/o the operation you won't be here but with the operation you can have a long full life.

Your English is good

 

[nobog]

You can do anything you want - even climb Mt. Everest - look it up.

 

[pellicle]

Hi

"lots of stuff"

well I was diagnosed at 5, had my first OHS (a repair) at 10, second at 28 and third at 48.

From all of what I've learned in that process I can say with confidence: get a mechanical valve now or you'll regret it later. You will not get a lifetme out of any other valve type. Its possible you may need another surgery, but you can be sure that won't be from the valve, if you get a mechanical.

The biggest improvements in valve surgery outcomes are in the area of monitoring of the AntiCoagulation Therapy (ACT). So as soon as possible after surgery switch over to using a Roche CoaguChek and managing your own therapy (exactly as you will need to do with your insulin therapy anyway). Managing ACT is easier than Insulin because in the main you only need to measure once a week (not 5 times a day).

@brachikaa is from just around the corner from you (in Bosnia) and he can perhaps attest to

1. how ****** the management of ACT is in (at least his) parts of the world
2. how much better and more confident about it he feels now that he is managing his own ACT
3. how much better informed he is about ACT than any of the doctors he meets

You're a bit early for the book I'm writing on self managing ACT but when you're on it, reach out and I can guide you.

Lastly if you've ever done any mountain climbing you'll know what this means as proof that you can do anything:
https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
I do as much as anyone my age (probably more than most my age).

 

[Chuck C]

Welcome to the forum!

I am a 21 years old guy, diagnosed with BAV and diabetes T1 both at 12 years old

Sorry to hear that. That's a tough hand that you were dealt, but many of us here, perhaps most, were dealt tough hands. Hopefully, this board can be a source of information and encouragement for you. It is not the hand you were dealt that will determine if you have a meaningful life, it is your attitude.

I am afraid that I might suffer some complications during the second procedure

All I can say is don't be. This is a low risk operation. The number that is talked about is often around a 2% mortality, rate, but the reality is that as a young person your odds are far better than that. You will come out the other side and be on your way to recovery. The good news is that because you are getting a mechanical valve, this will likely be your last one.

scared that I am going to miss out on the once per month party time where I get most of my fun time, that

Having a mechanical valve and being on warfarin does not mean that you can't drink. Many of us drink from time to time. There have been some occasions where I have had many drinks in one day. As someone else has pointed out, don't drink so much that you fall down and hit your head. However, you are a Type 1 diabetic. This is probably much more of a concern and risk when in comes to consuming alcohol, due to risk of having a hypoglycemic episode. I hope that you are aware of the steps that can be taken to reduce the risk of consuming alcohol for T1D.

that I can't exercise anymore, having an active lifestyle

I would suggest reading all the threads you can find on this forum about life on warfarin. You absolutely can have an active life. Today I did Brazilian Jiu Jitsu for 90 minutes in the morning. I had to wrestle this 240 pound (109 kilo) 6 foot 5 inch guy that we call the Viking. He's a beast and my mechanical valve and warfarin did not hold me back. Later in the day I went to my other gym and swam relatively hard for 25 minutes. Ask around and read the threads, you will find that folks on warfarin are as active as they want to be. Use common sense. Maybe not taking up machete juggling would be a good idea.

I am scared because I may have a short and painful life and I am pretty tired of pain for the next 100 years

You should not have a painful life. You will have some discomfort after surgery, but they will have pain medication to help this and the recovery time passes quickly. And, you can have a normal long lifespan. It will be key for you to pay attention to your INR and manage it properly. Also, those who are T1D can have totally normal lifespans if they manage their diabetes properly. Dr. Bernstein has type 1 diabetes and is 88 years old and still going strong. He has written books about managing diabetes. The low carb diet he promotes is now accepted by the ADA (American Diabetes Association)
https://en.wikipedia.org/wiki/Richard_K._Bernstein
Oh and as far as evidence that you can have a long normal life with a mechanical valve on warfarin, you need to look no further than this forum. @dick0236 is 86 years old and has had had a mechanical valve and been on warfarin for over 55 years.

And I have one more question can you live a "normal life" like having fun drinking, motorcycling, playing football, and running with this illness?

Of course you can. Just be sensible about how aggresively you play football and take precautions while drinking, mostly related to your diabetes.

Feeling anxiety is normal for a young person facing what you're facing. But, I believe that you can work through it and realize that most, if not all, of the things that are causing your anxiety are due to misunderstandings about life on warfarin.

We are here for you to help with any questions that you might have. Spend some time reading up on the warfarin threads and fire away with any questions that you have for us.

 

[Chuck C]

You're a bit early for the book I'm writing on self managing ACT but when you're on it, reach out and I can guide you.

I really hope he takes you up on your generous offer. You have helped so many people to manage their INR.

 

[dick0236]

Welcome to the forum. I agree with the earlier posters that a valve replacement will do little to alter your life and lifestyle in the future. I got my "one and only" mechanical valve when I was 31, in the very early days of valve replacement surgery, and have lived a nearly normal life since. Now I am 87 and that valve is still functioning normally......so, yes you can have a normal life expectancy after surgery. I have done most normal things, and a few stupid things while living with the valve. You have experience with anti-coagulants which puts you ahead of nearly all new mechanical valve patients......so you already have a leg up on nearly all new members of the "zipper club".

Glad to see you posting your concerns and questions.

 

[pellicle]

I really hope he takes you up on your generous offer. You have helped so many people to manage their INR.

thanks for the kind words Chuck. Personally I feel that someone has got to want to do it, because one has to in some ways fight the system. This takes a personality type OR it takes being ignored, frustrated, scared and a few close calls.

I wrote to a friend today about this issue and "someone I may be able to help". I said something like:

I'll do what I can for them, but there are a few "pre requisites":

1. have a mechanical valve or even just an INR range given by their doctor
2. have to have a disciplined head on their shoulders
3. be willing to purchase a Roche Coaguchek INR monitor (about $500)
4. be capable of adherence to a method
5. be basically computer literate

I anticipate (being realistic) that probably globally about 5,000 people will pass all of the above selection criteria and using some criteria (Estimated number of patients in the United States (2020) 2,424,821) I figure my sales estimate is about 0.2% of the people on warfarin in the USA.

You can see I'm an optimist on sales ;-)

 

[tommyboy14]

@pellicle I would like to pre-order my copy please. This is a fantastic public service that you are providing.

 

[pellicle]

I would like to pre-order my copy please

firstly thanks for the kind words, but just to let you know there are some interesting problems arising on Amazon now days with books being stolen, republished by someone else, then Amazon declaring you are in breech of their "exclusivity clause" and de-listing your book then not paying you anything.

So its lose lose for the author
https://goodereader.com/blog/electr...se-causing-issues-for-authors-who-are-pirated
a reasonably recent issue (like this year). I'm still getting to the bottom of that to see if its related to unsafe practices by authors and how to ensure I mitigate against that.

So this sort of detail is proving interesting to understand and resolve

 

[dornole]

Atreus, hopefully these folks have reassured you somewhat. Did you have open heart surgery before? My valvuloplasty was just done through a vein which I think is typical. If you haven’t had full OHS before, that should be very much in your favor.

Also your English is close to flawless. However you learned it, you have learned it very well.

 

[Deepak khanka]

I fully agree with all the heart warriors. I would say rather have the OHS when your diabetic risk is low

 

[Timmay]

A common reop for BAV aortic people is due to aortic aneurism.

Make sure that you emphasize HEAVILY to your surgeon that if there is any doubt whatsoever that your aorta won’t take the abuse over the next 60 years, then do a replacement of your aortic valve with a mechanical one that comes preattached to a replacement conduit. This is often termed the Bentall procedure. Again, make sure they use a one piece prosthesis with the valve already preattached to the replacement “synthetic” aorta

Some of the best outcomes that I have read about here were by individuals that have had the aorta replaced at the same time with the one-piece prosthesis.

 

[Atreus]

That website gives the risk of surgery based on your characteristics, the risk is between 0.5-1.5% depending on whether you count valvuloplasty as a surgery. (I think this isnt OHS). Your actual risk will be even lower than that because of your very young age relative to the age of people getting the surgery.

At my valvuloplasty it was decided that it should be done via OHS. So the risk will be a little higher, I think

Pretty much all of these studies come from an era when warfarin management was done by a doctor, while nowawadys you can self-manage. All of the self-management evidence shows that you can half the risks. So I wouldnt worry at all about this in your case.

In this corner of the world, warfarin management is still done by a doctor, where supposedly the patients monotorises his INR only once per month.
Thank you for your kind response

 

[Atreus]

The biggest improvements in valve surgery outcomes are in the area of monitoring of the AntiCoagulation Therapy (ACT). So as soon as possible after surgery switch over to using a Roche CoaguChek and managing your own therapy (exactly as you will need to do with your insulin therapy anyway). Managing ACT is easier than Insulin because in the main you only need to measure once a week (not 5 times a day).

Thank you, I looked into it a little bit, and when the time comes I will buy it already saving money for it (here it costs aproximativley 841$), and if you say managing ACT is like managing my insulin therapy then it seems a little more approachable problem.

 

[Atreus]

Brazilian Jiu Jitsu for 90 minutes in the morning.

Wow BJJ with a mechanical valve, you are amazing sir, this gave me hope for leading a better life, when you put it like this, it doesn't look scary anymore.
The pain I felt after my first surgery was horrible and persisted for nearly 2 months post-op and I took many pain meds mostly anti-inflammatory meds. That was the most excruciating part.
About diabetes problems, I am aware of every situation and possibility of having hypoglycemia and thank you for telling me about Dr Bernstein, I never heared of him until now, I will look into his low carb diet.
Thank you for your kind response.

 

[Atreus]

Atreus, hopefully these folks have reassured you somewhat. Did you have open heart surgery before? My valvuloplasty was just done through a vein which I think is typical. If you haven’t had full OHS before, that should be very much in your favor.

Also your English is close to flawless. However you learned it, you have learned it very well.

Yes I had open surgery before for my valvuloplasty, 1 year and a half ago. To quote from my surgeon "I have to open you for having more access to the valve, and if it goes wrong I will easily put a mechanical valve" and when I woke up the first thing I asked was if the surgery was a success or not.

 

[TGM]

Good day everyone! I am a 21 years old guy, diagnosed with BAV and diabetes T1 both at 12 years old, who had a valvuloplasty 1 year and 6 months ago. At my last echo I was informed that I must have second OHS in the summer for a replacement of my aortic valve with a mechanical one, I know about taking anticoagulants, keeping my INR in range, and having a balanced diet, but I am scared, terribly scared, I am afraid that I might suffer some complications during the second procedure, scared that I am going to miss out on the once per month party time where I get most of my fun time, that I can't exercise anymore, having an active lifestyle or keeping people close to me, also I am scared because I may have a short and painful life and I am pretty tired of pain for the next 100 years. I will be glad if anyone has a support guide on what can you still do with the mechanical valve, what should I avoid and some encouraging words to reduce my anxiety would also work well.
And I have one more question can you live a "normal life" like having fun drinking, motorcycling, playing football, and running with this illness?
Thank you in advance and sorry for my terrible English.

Hello there,

My son is 20 years old and has had a mechanical valve since aged 4. He has required 4 OHS, his most recent at aged 15. His limitations include no contact sports and he needs to limit his weightlifting to lighter weights. He does not avoid any foods due to his anticoagulant. He doesn’t really drink alcohol much but I have heard that excessive drinking can impact INR. Because he’s had the valve almost his whole life, he has avoided risky activities like riding motorcycles but did ride bikes and electric scooters with a helmet (at least that’s what he’s reported). For the most part, he lives like many other young adults. He attends college, lives in a dorm, drives, has had jobs, friends, travels and exercises. He checks his blood a few times a month with a home INR monitor.

Best wishes on your surgery and recovery. If you ever want a young person to talk to about it, let me know. My son may be willing to communicate with you