33 Year Old Male, Recent Aortic Valve Replacement (Dec 2022)

[Cormac_1989]

Hi All,

Just wanted to do an intro post in case somebody might find it useful. Or somebody might be able to offer advice to me. I have already found this website super helpful and inspiring to be honest. Can see myself getting great use from the threads here as there is some great info being shared, thank you all for sharing. I am using the full terminology in this post as just getting used to the abbreviations myself.

I am 33 year old male, born in 1989. I was born with bicuspid aortic valve. This was diagnosed in 2021 when i was 31. First follow up echo done in Jan 2022 and was advised then surgery needed to replace the valve in next 12-24m. In the subsequent scan in June 2022 the cardiologist advised it was time to meet the surgeon. So I met the surgeon in July 2022 and booked surgery for Dec 7th 2022. I was showing very little to no symptoms and felt very good , played tennis 5 nights per week and was doing cardiac prehab classes twice per week with light weights. Also doing circa 15-20k steps per day.

I opted for an On-x valve on the recommendation from the surgeon. The surgery went well and i was back on my feet the very next day and out of ICU within 1-2 days, oxygen back to 100% next day. Unfortunately then after around 5-7 days i got quite sick and it was later diagnosed as pericarditis and a pericardial effusion. They tried to treat this with medicine but it did not reduce the fluid in the pericardial sack so a second procedure was done on Day 14 of recovery (new drain inserted). I eventually got out of hospital on Dec 27th and am recovering well at home.

I live in Kildare, Ireland. The Cardiologist is Professor Charles McCreery in Blackrock Clinic. The Surgeon is Mr Lars Nolke. The cardiac physio who i find excellent and who specialises in heart failure is Karen Craddock.

I used to shy away from the heart condition and was worried a lot but now that it is done i am happier and feel i can face the issue more head on. I had brain surgery in 2013 due to an assault and subdural hematoma so kind of struggled when diagnosed with heart disease. Anyways I took some time off work and lost some weight pre op, got my diet and nutrition in order, improved my cardiovascular fitness, spoke to a pyschologist regularly, and got my blood pressure into optimal range. Now that i am starting to feel like myself again i hope to continue this focus on my overall health and in particular cardiovascular / heart health.

I am meeting the cardiac physician tomorrow 31st Jan and meeting surgeon 4th Feb. I have a consult for the 6 week rehab program provided by the hospital on 15th Feb. I have my list of questions below if anyone had any comments or maybe suggested other questions that would be good. No worries if not. This is a very long post so might not even get a response. Thanks again to you all for sharing your stories and knowledge with the rest of the forum. I hope i can contribute too.

Questions for Surgeon and/or Physician

Will my level of activity dictate longevity of the valve?

When can i return to cold water therapy? (Cold showers, Ice bath, Sea Swimming)

When can i return to Gym, Swimming pool, Sauna.?

Can i use Bio Oil for my scar wound?

What is normal/healthy resting heart rate for me? (Currently low 60's)

When i can begin light weight training?

When do i know if my pericarditis is gone?

Is my aspirin life long? Why?

Is my Bisoprolol (Beta Blocker) life long? Why?

Is the rest of my heart and aorta all ok?

Is tennis safe to resume? Is it safe to cycle.

Is follow up echo needed due to the fluid remaining in the pericardial sack.?

 

[spartangator]

Great to have you here, Cormac. Glad all is trending so well and that you're on the other side of so much now. Indeed, documenting the details will serve some future site member so fair play for sharing all that.

I don't want to comment too much and be out of place in response to your questions because your care team will plan these out with you, especially once you are working with the rehab team.

That said--and, again, your cardiologist and physio and such will really decide these bits with you--I'll happily share my experience of the last 15 years since my valve work.

I've done all the activities you ask about in the questions, though certainly in due time and with intentional, slow progress, but I largely don't think about heart things when cycling, playing sport, working out, or sea swimming. I do ponder a little, I'll admit, especially when getting in the cold sea because of that initial breathlessness, but it's never been an issue, and I've worn my heart rate monitor when doing so, and it's grand.

In any case, as you've noted, there's heaps of sound people on here and much collected wisdom. We're here with you for the journey.

 

[Cormac_1989]

Great to have you here, Cormac. Glad all is trending so well and that you're on the other side of so much now. Indeed, documenting the details will serve some future site member so fair play for sharing all that.

I don't want to comment too much and be out of place in response to your questions because your care team will plan these out with you, especially once you are working with the rehab team.

That said--and, again, your cardiologist and physio and such will really decide these bits with you--I'll happily share my experience of the last 15 years since my valve work.

I've done all the activities you ask about in the questions, though certainly in due time and with intentional, slow progress, but I largely don't think about heart things when cycling, playing sport, working out, or sea swimming. I do ponder a little, I'll admit, especially when getting in the cold sea because of that initial breathlessness, but it's never been an issue, and I've worn my heart rate monitor when doing so, and it's grand.

In any case, as you've noted, there's heaps of sound people on here and much collected wisdom. We're here with you for the journey.

Thanks for that lovely detailed post. Yeah i just think back to all the worry i had last year and not knowing anyone who had been through the surgery didn't help me. So I can see how this site if found pre op will be a great help to others. Even post op it is great for people like me as the stories you see are incredible and what people can come through. That is very good to hear you have had an active lifestyle and even braved the cold sea! I believe (no evidence) it can even reduce inflammation in the body and your heart rate. Anyways thanks again mate and glad to see you are doing so well since your procedure, and agree on this website, i've been trawling through the threads the last few days. Great stuff, take care.

 

[pellicle]

Hi and welcome

glad you're finding things here helpful

sorry you had a rough ride on the start and happy to hear that the pericarditis subsided. Was it bacterial?

Questions for Surgeon and/or Physician

ok, so I'll work with this from the perspective of you're asking us to give input into what you'll ask the surgeon -> and provide an opinion of my own.

Will my level of activity dictate longevity of the valve?

no, it won't have any impact, and even if you live to 90, your valve itself will last longer than you.

When can i return to cold water therapy? (Cold showers, Ice bath, Sea Swimming)

right now if you like ... but wait for the 8 week mark to do anything like swimming.

When can i return to Gym, Swimming pool, Sauna.?

probably 8 week, you do have a broken bone, which is a slender and fine bone and you absolutely do not want that bone (the keystone of your chest) to be other than as good as it can be.

Can i use Bio Oil for my scar wound?

you can use anything you like on your scar ... I've never seen a study which demonstrated any more benefit than Oil of Ulan (or Olay in some coutries) but that doesn't imped the cosmetics companies selling their non-effective wares to millions of women.

What is normal/healthy resting heart rate for me? (Currently low 60's)

depends on the person, but that sounds like a good one

When i can begin light weight training?

about the 8 week mark, go into it gently then get into it like before

When do i know if my pericarditis is gone?

when its no longer visible

Is my aspirin life long? Why?

there are two aspects of anticoagulation, one is related to what the INR is measuring, the other is related to blood platelets sticking to each other like burrs on your socks. Aspirin stops the platelets having the right exterior for sticking together as well. The two aspects are distinct and different but are both two sides of the coin which is controlling bleeding. (jazzy word for that it haemostasis)

Is my Bisoprolol (Beta Blocker) life long? Why?

it might be, but that is definitely a conversation for you and your Cardio. I was off beta blockers by 3 months but some 12 years later I'm back on them (probably covid related but )

Is the rest of my heart and aorta all ok?

that needs echo studies and CT with contrast studies to be able to answer. I'm sure that they'll arrange that but if you lead the question with something like "I'm just wondering about the rest of my ascending aorta, what sort of schedule do you think we should be looking at for CT scans" you will perhaps earn brownie points.

Next is the fact that you are Bicuspid Aortic Valve (BAV) and and so BAV is strongly statistically associated with aneurysm. When I had my #2 OHS at 28 there was no sign of aneurysm, but when I came back (after no checkups for about 10 years) at 48 we found a rather large aneurysm (which wasn't there when I was 38). So getting checked every 2 or 3 years now is pretty important in discovering things and following them.

Information is always good to have. BTW my aneurysm was something like 5.5cm at the time of reoperation, which changed out my valve again too ... no biggie.

Is tennis safe to resume? Is it safe to cycle.

sure and yes ... although as a cyclist myself I have to warn you that most of my broken bone injuries have come from being hit by cars while cycling.

Is follow up echo needed due to the fluid remaining in the pericardial sack.?

you bet it is.


So, hopefully all that helps you for your next meeting.

Hit back with any other questions.

Now, as an aside, do not believe the On-X bullshlt sorry, marketing about INR ... keep your INR at 2.5 (unless otherwise directed higher by your cardiologist)

Best Wishes

 

[dick0236]

.............Yeah i just think back to all the worry i had last year and not knowing anyone who had been through the surgery didn't help me. So I can see how this site if found pre op will be a great help to others. Even post op it is great for people ..........

Welcome, Cormac_1989. You are certainly not alone in your worry pre-op......and post-op. I doubt any normal person can go thru this surgery without questioning their future. For me, the valve has made me think a little before I act.......most of the time (LOL). I have only one "must-do" for people new to warfarin (or similar anti-coagulants).....
...take the pill as prescribed!!!!!!!
...test INR routinely!!!
...live your normal life.......you won't be a piece of "china" and you will not break!!

Good luck to you and be sure to stay with this forum post AVR.

 

[ckeogh]

I eventually got out of hospital on Dec 27th and am recovering well at home.

Hi Cormac, I just read your profile. I must have just missed you, I got out of the beacon after 5 weeks at the end of November, on-x valve too.

Small world, glad to hear you are doing good

 

[pellicle]

Hi Cormac, I just read your profile. I must have just missed you, I got out of the beacon after 5 weeks at the end of November, on-x valve too.

Small world, glad to hear you are doing good

and a welcome to you too (as I see only one post)

 

[pellicle]

oh and @Cormac_1989 and @ckeogh just a brief wave from sortof an Irish Australian colonial boy

http://cjeastwd.blogspot.com/2014/05/the-great-delvin.html
I travelled there from Finland, which should also let you know "is travel ok" and can I take my coaguchek with me.

I live a normal active life post mech valve

 

[Cormac_1989]

@pellicle

Hi mate, thanks for the detailed and helpful response. I have seen a lot of your posts so glad you took the time to respond. I will have to ask the doctor/surgeon was the pericarditis bacterial, i don't remember them advising on same. But feeling a lot better now and all those symptoms like shoulder pain, chest pain and pain in diaphragm have subsided. Yep i was hoping for some feedback on the proposed questions so thanks again for that. Great to hear the valve will last a long long time all going well.

Noted on cold showers, hear rate gym and scar wound. Thank you

From your experience how long does it take for breast bone to heal fully? I have read 6-12 weeks minimum but could be longer?

Noted on the pericarditis and pericardial effusion, i will be asking when the next scans will take place to confirm same. Will be nice to hear some of the remaining fluid has re absorbed hopefully.

I understand now about the aspirin thank you. I will hopefully be taken off the beta blocker as my heart rate and blood pressure seem ok, but we will see.

Thanks for the proposed question on the aorta. I have had multiple echos done (2019, 2021, 2022 2x) and i probably 4/5 done while in hospital as well as CT Scan. So i just want to see is there anything else i need to know about, I shied away from it all previously but facing these things is obviously better. Seeing stories like yours and people with multiple OHS definitely helps, it's not as scary as we might make it seem at times. Amazing what surgeons can do!

This will absolutely help me for my meeting on Saturday so thanks again. And i have noted your previous posts on Warfarin and your blog posts. I am on recommended levels of 2-3 first 3m and then 1.6-1.8 afterwards. The GP and Clinic disagreed on this so settled on 1.6-2.5 but I will be aiming for 2.5 going forward, I was 2.6 on Monday with 13mg daily so it is going well.

Best Wishes

Cormac

 

[Cormac_1989]

Welcome, Cormac_1989. You are certainly not alone in your worry pre-op......and post-op. I doubt any normal person can go thru this surgery without questioning their future. For me, the valve has made me think a little before I act.......most of the time (LOL). I have only one "must-do" for people new to warfarin (or similar anti-coagulants).....
...take the pill as prescribed!!!!!!!
...test INR routinely!!!
...live your normal life.......you won't be a piece of "china" and you will not break!!

Good luck to you and be sure to stay with this forum post AVR.

Hi Dick, great post thanks for sharing. And love seeing your story below, done in 1967 and still going strong, incredible. Gives me hope! Also nice to see people encouraging others to live a normal life, I almost had myself wrapped in bubble wrap mentally. I am taking the warfarin seriously, thanks again for commenting and sharing your own story. Take care , Cormac

 

[Cormac_1989]

Hi Cormac, I just read your profile. I must have just missed you, I got out of the beacon after 5 weeks at the end of November, on-x valve too.

Small world, glad to hear you are doing good

Hey mate, yeah really is. Glad it went well for you. How are you coping since with it all? What surgeon did your valve.

 

[pellicle]

Hi

Hi mate, thanks for the detailed and helpful response

you're welcome

From your experience how long does it take for breast bone to heal fully? I have read 6-12 weeks minimum but could be longer?

this is a bit "driving outside my lane" but I believe that the long end of the scale may be derived from people who are elderly (who make up the majority of the stats).

When I was 28 I was back at Uni (had my surgery in very late 1992 near Christmas {which is summer in Oz} Semester break) and so I was attending lectures and stuff by end of Jan IIRC my flatemate drove for a while ... its foggy and I didn't really focus on that because I had a bunch of other things to focus on.

The GP and Clinic disagreed on this so settled on 1.6-2.5 but I will be aiming for 2.5 going forward, I was 2.6 on Monday with 13mg daily so it is going well.

Well here's the thing >read the On-X documents with a keen eye<, keener even than a contract with the devil. There have been numerous discussions on this INR protocol here but if nothing else this thread here should raise your eyebrows.
https://www.valvereplacement.org/threads/failure-of-onx-valve-and-problems-with-lowering-inr.878615/
its basically about the INR.

Without going into detail, to me the bottom line to achieving what they did in the PROACT trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6472691/
worth noting a few points:

• The mean follow-up was 3.8 years and was 98% complete ... 3.8 years is pretty interesting because the number coincides with the expected rate for all bileaflet mech valves if INR is between 1.5 ~ 19. Suggesting (shock) there is nothing more than marketing aimed at concern (perhaps hysteria) about INR
• Very little is usually made about the panus guard of the On-X, which for diameters of less than 25mm makes for a slightly elevated risk of panus
• Concomitantly, all patients received aspirin 80 mg and were monitored using home INR testing. Again this is interesting and consistent with best practice of testing, yet people seem to advocate testing fortnightly, monthly ...
• this point in particular bothers me: Any patient who experienced a TE event in the study group was crossed over to the standard INR group, though they remained in the test group through an intention-to-treat analysis. So basically if you had any TE event (even a TIA) you were then treated at INR 2 ~ 3 but statistically counted as the 1.5 ~ 2 group
• The mean INR was 1.89 < larff ... so basically they shaved it closer to 2.0 than 1.5

HTH

 

[ckeogh]

Hey mate, yeah really is. Glad it went well for you. How are you coping since with it all? What surgeon did your valve.

Yeah I'm doing good, this was my third surgery. One was when I was just a few months old so this is only the second one I remember. Recovery this time at 30 v when I was 18 was much harder .
I breezed through the one at 18 but this one was a lot tougher mentally.

I'm back working now and feeling normal apart from getting a bit tired easily and trying to ignore the clicking and thumping from my heart. That seems to be the only things so I suppose I've got lucky so far.

Hoping to get back training Brazilian jiu jitsu in the next 6-12 months so I wouldn't worry to much about playing tennis if I was you but obviously I'd ask your cardiologist and don't listen to me .

My surgeon was prof Mark Redmond. I see you had a different one, I'm surprised at that. I thought he covered all aortic valve replacements in the beacon but obviously not.

They were great there but I had some complications like yourself post surgery. I ended up spiking temps from an infection that they couldn't pin point where it was. So they basically told me they were taking no risks of the infection spreading to the valve and put me on I.v antibiotics for 4 weeks and told me I was going nowhere so stop complaining and stop asking to leave . At the time I couldn't wait to get out but I'm glad they took this approach.

 

[thomas999]

You have many questions. I won't try to answer them all individually, probably most only your doctors can, but briefly tell you my story. I was 32yo when I had emergency surgery, aortic valve prosthesis with st Jude mechanical valve. At first I was a bit paranoid about how to exercise, eat, and function in society.With time, most of that apprehension went away. I am now 67 and done everything I wanted to do in life. Worked an entire career and am now retired, played in sports (softball, golf, volleyball, (non-contact), traveled the world, and eat what I want. I always have concerns with bleeding issues being on thinners, but that is just life. My plan is to enjoy life but not do foolish things that would cause bleeding, like contact sports, lifting heavy weights, etc. I do go to the gym on a regular basis , but again, on in moderation. I never aspired to body building, so all is good. Moderation, and good sense should see you through just fine!

 

[Cormac_1989]

You have many questions. I won't try to answer them all individually, probably most only your doctors can, but briefly tell you my story. I was 32yo when I had emergency surgery, aortic valve prosthesis with st Jude mechanical valve. At first I was a bit paranoid about how to exercise, eat, and function in society.With time, most of that apprehension went away. I am now 67 and done everything I wanted to do in life. Worked an entire career and am now retired, played in sports (softball, golf, volleyball, (non-contact), traveled the world, and eat what I want. I always have concerns with bleeding issues being on thinners, but that is just life. My plan is to enjoy life but not do foolish things that would cause bleeding, like contact sports, lifting heavy weights, etc. I do go to the gym on a regular basis , but again, on in moderation. I never aspired to body building, so all is good. Moderation, and good sense should see you through just fine!

Hi Thomas , absolutely love seeing posts like this , thanks so much for sharing. If I can get through the next 35 years like the above I’ll be very happy. Great to hear, take care.

 

[Cormac_1989]

Yeah I'm doing good, this was my third surgery. One was when I was just a few months old so this is only the second one I remember. Recovery this time at 30 v when I was 18 was much harder .
I breezed through the one at 18 but this one was a lot tougher mentally.

I'm back working now and feeling normal apart from getting a bit tired easily and trying to ignore the clicking and thumping from my heart. That seems to be the only things so I suppose I've got lucky so far.

Hoping to get back training Brazilian jiu jitsu in the next 6-12 months so I wouldn't worry to much about playing tennis if I was you but obviously I'd ask your cardiologist and don't listen to me .

My surgeon was prof Mark Redmond. I see you had a different one, I'm surprised at that. I thought he covered all aortic valve replacements in the beacon but obviously not.

They were great there but I had some complications like yourself post surgery. I ended up spiking temps from an infection that they couldn't pin point where it was. So they basically told me they were taking no risks of the infection spreading to the valve and put me on I.v antibiotics for 4 weeks and told me I was going nowhere so stop complaining and stop asking to leave . At the time I couldn't wait to get out but I'm glad they took this approach.

Hey man, thanks for sharing. Great to hear your back to work now and all. Even heading back to BJJ is nice. I see another poster here is into it. I’ve been following MMA since 2005. Sounds like you also had a tough time in hospital man, I thought 3 weeks was bad! I was same as you, mad to get out but they weren’t taking any chances I suppose so in hindsight as you say probably for the best. If you ever want to get a coffee or a pint (just one ) let me know! Take care

 

[Cormac_1989]

Hi


you're welcome



this is a bit "driving outside my lane" but I believe that the long end of the scale may be derived from people who are elderly (who make up the majority of the stats).

When I was 28 I was back at Uni (had my surgery in very late 1992 near Christmas {which is summer in Oz} Semester break) and so I was attending lectures and stuff by end of Jan IIRC my flatemate drove for a while ... its foggy and I didn't really focus on that because I had a bunch of other things to focus on.



Well here's the thing >read the On-X documents with a keen eye<, keener even than a contract with the devil. There have been numerous discussions on this INR protocol here but if nothing else this thread here should raise your eyebrows.
https://www.valvereplacement.org/threads/failure-of-onx-valve-and-problems-with-lowering-inr.878615/
its basically about the INR.

Without going into detail, to me the bottom line to achieving what they did in the PROACT trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6472691/
worth noting a few points:

• The mean follow-up was 3.8 years and was 98% complete ... 3.8 years is pretty interesting because the number coincides with the expected rate for all bileaflet mech valves if INR is between 1.5 ~ 19. Suggesting (shock) there is nothing more than marketing aimed at concern (perhaps hysteria) about INR
• Very little is usually made about the panus guard of the On-X, which for diameters of less than 25mm makes for a slightly elevated risk of panus
• Concomitantly, all patients received aspirin 80 mg and were monitored using home INR testing. Again this is interesting and consistent with best practice of testing, yet people seem to advocate testing fortnightly, monthly ...
• this point in particular bothers me: Any patient who experienced a TE event in the study group was crossed over to the standard INR group, though they remained in the test group through an intention-to-treat analysis. So basically if you had any TE event (even a TIA) you were then treated at INR 2 ~ 3 but statistically counted as the 1.5 ~ 2 group
• The mean INR was 1.89 < larff ... so basically they shaved it closer to 2.0 than 1.5

HTH

Thanks again for the above mate, some good reading for me to do. I’ll defo aim to keep INR at 2.5 rather than the lower end recommended / marketed by doctor/On-x. Take care

 

[TomM]

Hi @Cormac_1989. I find a home INR checker useful. It was a year after surgery that I started using one. Up to then I tied into a hospital warfarin clinic to keep a check on my INR levels. @ckeogh It's homely to see some Irish like myself on here.

 

[ckeogh]

If you ever want to get a coffee or a pint (just one ) let me know! Take care

Warfarin or not has it ever been "just one" haha, but yeah that would be good

@ckeogh It's homely to see some Irish like myself on here.

@TomM I was surprised to see a few Irish here to but it's nice to see. It really is true that for such a small country we are everywhere

 

[pellicle]

It really is true that for such a small country we are everywhere

Irelands biggest export industry over the years has been the population.
;-)

Helped in no small way by the neighbours.