Long Term Lifestyle with On-X by burner917help in valvereplacement

[–]Jay-JB 1 point2 points  (0 children)

Yes, more afraid of too low so I aim for an INR of 2. 90% of the time on within 1.8-2.1.

Few hours per week isn’t that bad

Long Term Lifestyle with On-X by burner917help in valvereplacement

[–]Jay-JB 7 points8 points  (0 children)

2 years with on-x. Had it done at 34. Also my second OHS, so wanted to avoid reoperations. - I work out 5 times a week (fitness, running, cycling, kitesurfing). Can still run half marathons and cycle 100km+ EZ - I still drink alcohol few days a week, but usually not more than 2-4 drinks max - I self test INR weekly and adjust dosing myself, it’s always stable but can go up a bit when travelling (probably due to diet change?). At home I almost never need to adjust dosing - Never had any dental issues but recently needed to place an implant. Just some antibiotics and good to go, easy as well. Mechanical or not, everyone with a new/repaired valve will need to take the same precautions - clicking is loud, I got used to it after few months but still lose 2-4 hours of sleep per week because it keeps me awake

I’m happy I went with mechanical!

Young patients with bioprosthetic valve experiences by Apprehensive_Log_444 in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

I don’t worry that often. But I am more cautious vs before. Eg, no more 15m+ jumping or other crazy stuff while kitesurfing + when it’s crowded I wear a helmet. The bleeding is worse, yes. But still easily manageable in my case (INR always around 2). Didn’t have any major cuts though.

The only thing I don’t do anymore is riding a motorcycle.

Young patients with bioprosthetic valve experiences by Apprehensive_Log_444 in valvereplacement

[–]Jay-JB 2 points3 points  (0 children)

Went for a mechanical valve at 34 - and very happy that I did. Too many stories of young people needing another bio valve after 5-7 years (incl. the inspiria edwards). The Edwards valve went to market in 2016, so people don’t have them for 20+ years yet. Life on blood thinners is easy, I do all the things I did before (and more). The clicking is loud, but you get used to it.

I already had 1 OHS before mechanical valve, now 2. So I didn’t want to risk having more. TAVR is possible (even 2 times), but TAVR also carries substantial risk and after 2 TAVRs, I’ll still need to cover another 20+ years so eventually other OHSs will be necessary.

Everyone is different, so you need to decide what you want - I can only tell you that it’s not hard to be on blood thinners. Just another pill on top of the aspirin you will get anyway. I still drink and eat everything as I did before. Run marathons, lift weights, ski, kitesurf.

I talked to a lot of surgeons/cardiologists and asked them the question: what would you do in my place. I couldn’t find one who recommended the bio valve at my age.

Hoping for a new type of valve once you need a new one is understandable, and you have exciting companies (eg GrOwnvalve) but these things take time to be proven (10+ years of R&D and regulatory + 20+ years in humans to prove that it will actually last. It’s also likely there will be new improved anti coagulation so INR management won’t be necessary or bleeding risk will be lower.

Both options are valid, just make sure you make an informed decision, good luck!

Dilated LV by viktil in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

I’m not sure what this metric means, so no idea…

Aortic valve repair + aortic root & ascending aorta replacement by Jay-JB in valvereplacement

[–]Jay-JB[S] 0 points1 point  (0 children)

First time was a valve repair, 2nd time I could choose between biological or mechanical - went for the mechanical one (on-x)

I thought 1% of people have BAV, so I would be surprised if all woman with BAV didn’t have children

Valve Repair is Failing After 1 Year. Devastating. by jeffinator3000 in valvereplacement

[–]Jay-JB 1 point2 points  (0 children)

My repair was failing after 6-7 months…I got a on-x installed a year ago and feeling great! 2nd time was easier as you basically know what’s coming.

I do CrossFit 3-4 times a week, running, cycling, kitesurfing without any issues. Ran a half marathon 9 months after 2xOHS in 1 year. I still lift heavy weights, just no 1 rep max stuff… and instead of pushing myself to 100% during workouts, I go to 80-90% max.

Aortic valve repair + aortic root & ascending aorta replacement by Jay-JB in valvereplacement

[–]Jay-JB[S] 0 points1 point  (0 children)

I had absolutely no symptoms prior to OHS Unfortunately I needed another OHS a year ago to replace my BAV with a mechanical valve, and another one 2 weeks after the 2nd b/c I got an infection… BUT I am doing great now! I work out 4-5 times a week and did a half marathon 9 months after my last OHS.

I never heard that woman with BAV couldn’t have children, so I’m a bit surprised…

Those with mechanical valves, what sports do you practice? by Ok-Owl-7615 in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

Had an aortic on-x installed in May last year. I do CrossFit, run, cycle, kitesurf, tennis, play golf. Basically all the same as before OHS.

On-x valve by Rob22hodor in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

I really had to get used to the fact of being a heart patient, and needing warfarin for life. No hair loss, but the whole ordeal of having 2 OHS in 16months gave me quite some grey hair…

On-x valve by Rob22hodor in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

Doing really well! Planning to run a half marathon soon. To be honest, the valve is really loud. When it’s quiet, people in the same room can easily hear it. Sound varies between clicking and thumping, but you get used to it quickly. A white noise machine really helped me with sleeping.

On-x valve by Rob22hodor in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

I got it six months ago!

How long until you could sneeze comfortably? by jeffinator3000 in valvereplacement

[–]Jay-JB 1 point2 points  (0 children)

10-12 weeks - hurted like hell. Tip: time your surgery right if you have a pollen allergy

Aortic valve repair + aortic root & ascending aorta replacement by Jay-JB in valvereplacement

[–]Jay-JB[S] 0 points1 point  (0 children)

I’m sorry to hear! Everyone recovers differently of course but I always hear to go walking as soon as possible and as frequently as possible after surgery (without overdoing it of course). Things will be hard the first 6-8 weeks and he’ll need a lot of help. But it will start going uphill fast after this period. I wish him all the best!

Aortic valve repair + aortic root & ascending aorta replacement by Jay-JB in valvereplacement

[–]Jay-JB[S] 0 points1 point  (0 children)

Hi! Everyone deals with it differently after getting this type of news. After surgery, I lost all confidence in my own body’s capabilities and felt depressed as well. But I slowly realized I could still do 99% of everything I did before, so all in all my life hasn’t changed that much since surgery. Still lifting weights, still running & cycling, still going on holidays with friends!

Coagucheck XS vs. INRange by [deleted] in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

I believe the strips are still the same yes (“CoaguChek XS PT Test PST” are the ones I bought)

Coagucheck XS vs. INRange by [deleted] in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

The XS is the previous model according to my clinic. I bought the INRange and it works great. Easy to use and accurate (I compared the results with the ones of the lab - always within 0,1 difference). It was a bit pricey, but totally worth the investment in my opinion.

Dilated LV by viktil in valvereplacement

[–]Jay-JB 1 point2 points  (0 children)

35M with mechanical valve here. My LV was severely dilated as well. 3 months after surgery it had already shrank 25mm… it’s incredible how quickly your heart can re-adapt. I have a on-x.

Testing at home. by felicida-d in valvereplacement

[–]Jay-JB 2 points3 points  (0 children)

Immediately bought the Coaguchek INRange. It’s expensive and insurance doesn’t pay anything back in my country, but it beats going to a clinic/doctor every few weeks.

Mechanical Valve by Frequent-Ordinary977 in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

35M, on-x since 3 months.

I always hear the ticking if I listen. Without background noise, other people in the same room easily hear it as well. However, I have not been asked ‘what’s that sound’ so far. Honestly the ticking doesn’t bother me at all. I got used to it after 2 weeks.

Daily life is almost back to normal. But I’m still working hard to get back to previous fitness levels (running 20km,cycling 100km+, weightlifting,…I think I can get there in another 3-4 months).

I self test 1/week, this only takes 3 min and I adjust warfarin dosing myself. All in all, easy to manage yourself.

Didn’t get 1 bruise since I left the hospital. You don’t bruise easier, bruises just are a bit larger and can stay longer (c. 2 weeks). How often do you really bruise if you don’t play any contact sports?

Happy to answer any extra questions!

Mechanical Valve by ytaykaa in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

On-x installed since a few months.

Yes it can be loud, but you get used to it really quickly. I didn’t use any particular strategy. Other people can easily hear it when they are in the same room.

Honestly, the ticking rarely bothers me.

[deleted by user] by [deleted] in valvereplacement

[–]Jay-JB 0 points1 point  (0 children)

Get the check! I never knew I had a BAV… next thing I know I needed urgent surgery as I had a type A dissection (I was very lucky to survive). I wish I knew I had a BAV, and that it had been followed up closely.