Third OHS coming up soon

[newyorker]

Hi all,

I'm getting ready to have my stenotic bioprosthetic aortic valve replaced with a mechanical one in the next 1-2 months, at age 43. The prosthetic valve was put in place 9 years ago due to severe regurgitation (2014, New York, Mount Sinai), a little more than a year after my first OHS (valve sparing aortic root replacement due to aneurysm in 2013, New York, Presbyterian).

It's been interesting scouring through this forum once again, this time with a slightly different perspective. I was sold on "15-20 years of life with no restrictions" when faced with the valve choice last time, as well as comments alluding to technical advancements potentially making it possible to never have to do OHS again. It was a good 9 years, during which I reached my peak physical form thus far in life, and yet, here we are. In hindsight, I wish I had chosen a mechanical valve last time around already.

I relocated to Europe shortly after my second surgery, and the next one will take place in North Estonia Medical Center in Tallinn, Estonia - my home for the past 8 years. Access to cardiologists with whom I can communicate without language barriers has not been great here. Despite my medical history being visible in the local system, it took me a good 6 months from raising my concerns about feeling something different in my chest during intensive workouts to getting it confirmed by an echo, but once I got put in touch with the surgical department, the pace picked up. In June we agreed to postpone the surgery until school start, so we - my wife and our 3 kids - would be free spend the summer where we wanted to.

Last night I went for a walk with my wife and thought I felt those same sensations in my chest, despite rather light cardiac workload. Maybe I'm overthinking and imagining, but it doesn't really matter. We're returning to Estonia next week, the surgeon will be back from his leave shortly thereafter, and I feel ready to schedule the surgery for the first available date after that.

 

[pellicle]

Hi from an Ozzie who used to be a neighbor (when I lived in Finland)

your report about communication in Estonia is similar to my experience in Finland. So I'm back here now.

I had my third surgery in 2011 and got a mechanical. Its been pretty simple with the only thing I've needed to adapt to is warfarin. Its basically simple. You can find (if you haven't already) everything I've written and published on my blog here:

https://cjeastwd.blogspot.com/search/label/INR
Unfortunately Blogger isn't a book and presents it most recent first when the better order for reading is probably the other way round. Either way the key article for you at this time is this one

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
Take your time and eat the elephant one bite at a time.

Tervetuloa

 

[tom in MO]

Hi all,

I'm getting ready to have my stenotic bioprosthetic aortic valve replaced with a mechanical one in the next 1-2 months, at age 43. The prosthetic valve was put in place 9 years ago due to severe regurgitation (2014, New York, Mount Sinai), a little more than a year after my first OHS (valve sparing aortic root replacement due to aneurysm in 2013, New York, Presbyterian).

It's been interesting scouring through this forum once again, this time with a slightly different perspective. I was sold on "15-20 years of life with no restrictions" when faced with the valve choice last time, as well as comments alluding to technical advancements potentially making it possible to never have to do OHS again. It was a good 9 years, during which I reached my peak physical form thus far in life, and yet, here we are. In hindsight, I wish I had chosen a mechanical valve last time around already.

I relocated to Europe shortly after my second surgery, and the next one will take place in North Estonia Medical Center in Tallinn, Estonia - my home for the past 8 years. Access to cardiologists with whom I can communicate without language barriers has not been great here. Despite my medical history being visible in the local system, it took me a good 6 months from raising my concerns about feeling something different in my chest during intensive workouts to getting it confirmed by an echo, but once I got put in touch with the surgical department, the pace picked up. In June we agreed to postpone the surgery until school start, so we - my wife and our 3 kids - would be free spend the summer where we wanted to.

Last night I went for a walk with my wife and thought I felt those same sensations in my chest, despite rather light cardiac workload. Maybe I'm overthinking and imagining, but it doesn't really matter. We're returning to Estonia next week, the surgeon will be back from his leave shortly thereafter, and I feel ready to schedule the surgery for the first available date after that.

If your valve is stenotic and you are having symptoms, you might want touch base with your cardiologist and see if there is a need expedite your surgery.

 

[newyorker]

If your valve is stenotic and you are having symptoms, you might want touch base with your cardiologist and see if there is a need expedite your surgery.

If I had a designated cardiologist I can easily reach I would, but unfortunately that's not how health care works where I'm based - I'd need a referral from my GP, and waiting times for these appointments are measured in months. The option is to go to ER, but I don't think that's justified either. To be clear - I don't have any symptoms at rest, and I am set up to take it very easy between now and the surgery. I'll get in touch with the surgeon once he's back from leave after Aug 7th.

 

[newyorker]

Hi from an Ozzie who used to be a neighbor (when I lived in Finland)

Thanks pellicle! I've read many of your posts and found a lot of useful information, much appreciated. I'm also into numbers and definitely plan to self test, despite Estonia's health insurance not covering that cost.

Where in Finland were you based? I grew up around Helsinki, and still visit regularly to visit family.

 

[pellicle]

despite Estonia's health insurance not covering that cost

Neither does Australia. Cost is trivial, can be compared to a coffee at a cafe.

 

[Timmay]

Hi all,

I'm getting ready to have my stenotic bioprosthetic aortic valve replaced with a mechanical one in the next 1-2 months, at age 43. The prosthetic valve was put in place 9 years ago due to severe regurgitation (2014, New York, Mount Sinai), a little more than a year after my first OHS (valve sparing aortic root replacement due to aneurysm in 2013, New York, Presbyterian).

It's been interesting scouring through this forum once again, this time with a slightly different perspective. I was sold on "15-20 years of life with no restrictions" when faced with the valve choice last time, as well as comments alluding to technical advancements potentially making it possible to never have to do OHS again. It was a good 9 years, during which I reached my peak physical form thus far in life, and yet, here we are. In hindsight, I wish I had chosen a mechanical valve last time around already.

I relocated to Europe shortly after my second surgery, and the next one will take place in North Estonia Medical Center in Tallinn, Estonia - my home for the past 8 years. Access to cardiologists with whom I can communicate without language barriers has not been great here. Despite my medical history being visible in the local system, it took me a good 6 months from raising my concerns about feeling something different in my chest during intensive workouts to getting it confirmed by an echo, but once I got put in touch with the surgical department, the pace picked up. In June we agreed to postpone the surgery until school start, so we - my wife and our 3 kids - would be free spend the summer where we wanted to.

Last night I went for a walk with my wife and thought I felt those same sensations in my chest, despite rather light cardiac workload. Maybe I'm overthinking and imagining, but it doesn't really matter. We're returning to Estonia next week, the surgeon will be back from his leave shortly thereafter, and I feel ready to schedule the surgery for the first available date after that.

I wanted to say Thank You for sharing this and being honest. Specifically, “In hindsight, I wish I had chosen a mechanical valve last time around already.”

I think that type of honesty and transparency … along with the “why’s” are super important here on this forum. So many docs are pushing these bio valves without any true level of honesty with regard to how long they really will last for a younger, active person. OHS is discussed as if it’s a teeth cleaning. OHS is huge for most of us (regardless of age) and will be the biggest thing we’ve done.

Why people make the voluntary choice to have 3 in a lifetime is just so difficult for me to fathom. More surgeries puts your life at risk more AND things become more complicated with additional surgeries (scarring, etc).

Docs like to talk about a limitless life with a bio valve. I’m confused. How is my life limited now while on Warfarin?!

 

[Matt Livingston]

Thanks for sharing, I just wanted to chime in that I just had my 3rd OHS 2 months ago, at age 43, and had a mechanical valve replace my previous bioprosthetic. So I'm living proof that someone very similar to you just made it through fine. My previous valve lasted 23 years, however, so I don't regret it. I'm glad to have the 2 mechanical On-x now (had both aortic and mitral replaced this last time), thus far life is no different on warfarin other than having to take a pill every day.
Wishing you the best for serenity as you wait, that can be hard to manage. I've found just reading this forum to be very helpful over the past several months.

 

[newyorker]

Thought I'd write a quick update here. I had my surgery on Aug 23rd, and came home on Aug 30th. Overall, everything went well. While in the hospital, I mainly struggled from difficulty sleeping, lack of appetite, and headache. The final bill was 7.50€.

One big difference compared to previous surgery (in the US) was that this time (in Estonia), the drains came out of my chest on the second day already. Perhaps related, the echo done the day before discharge showed some fluid around the heart and lungs. I'm wondering if that is making me hear and feel my heartbeat more than I will further down the line. Right now it gets ridiculously intense when I fill my lungs with air. Cardiologist put me on some diuretics for a couple of weeks, if I see no improvement I'll have to ask her about it.

I'll go get my INR measured again tomorrow. Last week it dropped from 2.2 to 1.99 after two days at home.

 

[pellicle]

Hi

Thought I'd write a quick update here. I had my surgery on Aug 23rd, and came home on Aug 30th. Overall, everything went well. While in the hospital,

Thats excellent ...

I'll go get my INR measured again tomorrow. Last week it dropped from 2.2 to 1.99 after two days at home.

such variations are expected, but I'd personally steer towards 2.5 anyway, because that allows some wriggle room with variations.

The post surgery recovery is occasionally rocky, but at this stage of recovery I'd say that you're doing excellent.

Its been a while since I was in Tallin ... my wife and I went there (from Finland) for our first anniversary.

as you can probably guess travel to Tallinn from Finland is not an uncommon thing

Best Wishes

 

[Survived03]

I'm wondering if that is making me hear and feel my heartbeat more than I will further down the line. Right now it gets ridiculously intense when I fill my lungs with air.

It may or may not improve, but I guarantee it’s something you will soon forget about. I had a similar experience after my first OHS. Banged away and especially if I took a deep breath and held it. I assumed early in that it was just all the swelling. When it didn’t subside I was told it was probably the heart (pericardium) touching my breast plate. Interestingly, after my second OHS it is noticeably less intense. My recent surgeon mentioned that my heart basically jumped out of its peri sac while cutting further into the area for repair. He hypothesized that during my first surgery they made an attempt to suture the pericardium which may have decreased the ability to expand freely. This time they “tossed everything” back in and allowed the sac to heal together in its own.

The whole visualization makes me laugh. Again, I guarantee that you will forget about overtime. If it persists.

Best of luck and try not to worry.

 

[dick0236]

One big difference compared to previous surgery (in the US) was that this time (in Estonia), the drains came out of my chest on the second day already.

It's funny how we have lasting memories of the simplest things long after our surgeries. I still remember when they pulled the two tubes out of my chest......they pulled them one at a time and the pain was 13 on a scale of 1-10 Nowadays most patients hardly notice when they are pulled. Ain't progress wonderful.

 

[Chuck C]

Thanks for the update and welcome to the other side!

Hope that the diuretic works for the extra fluid around your heart and lungs.

Please continue to keep us updated on your recovery.

 

[treichert0312]

Chest tubes - wow that is BIG living. That got me so into the moment. I’ve had that done 3x for each OHS. First time I was 11 and did not really know what was going on. Wake Up! Second time seemed like the doc was pulling multiple patient tubes the same afternoon - he was looking almost frenzied. His eyes were blazing. It happened quite quickly- I knew it what to expect from pain but did not know what a huge relief it was afterwards.
The most recent time I had 4 tubes instead of two,and a little air around the lungs. Two tubes on left side were removed soon into my recovery, and the other two remained in for what felt like a couple more days. But getting them pulled - Yes! No more tubes in chest, plus the most intense burst of pain ever. And then it’s over but they had to stitch up the holes.
It’s all part of the membership dues to join the Zipper Club.

 

[Gustav]

Thought I'd write a quick update here. I had my surgery on Aug 23rd, and came home on Aug 30th. Overall, everything went well. While in the hospital, I mainly struggled from difficulty sleeping, lack of appetite, and headache. The final bill was 7.50€.

One big difference compared to previous surgery (in the US) was that this time (in Estonia), the drains came out of my chest on the second day already. Perhaps related, the echo done the day before discharge showed some fluid around the heart and lungs. I'm wondering if that is making me hear and feel my heartbeat more than I will further down the line. Right now it gets ridiculously intense when I fill my lungs with air. Cardiologist put me on some diuretics for a couple of weeks, if I see no improvement I'll have to ask her about it.

I'll go get my INR measured again tomorrow. Last week it dropped from 2.2 to 1.99 after two days at home.

The 'ridiculously intense' sensation when filling lungs will improve but doubt we will ever get rid of it. I honestly don't take any notice any longer after 7 years I'm 44 now. Funny thing when I take a deep breath under water I feel it much less if at all. I still manage to keep my breath for a long distance without issues.
I vividly recall the drain removal x3 although it felt like my organs are being pulled out the relief afterwards was insane and gave a total boost in morale. keep strong !

 

[newyorker]

INR keeps dropping, from 1.99 to 1.25 in one week. Increasing my weekly dose by 1 daily dose (3mg) as per instructions given a week ago did not help. Now my family doctor says I should increase weekly dose from 24mg -> 34,5mg = 4.5mg daily. Without much to back it up with, I'm worried this increase still won't be enough. I suppose everything will be fine, but being this far off does stress me out.

 

[tommyboy14]

I had a similar experience, but not as bad.

My INR fell to 1.8 after 10 weeks out of hospital. and the clinic was happy with increasing my dose by 1-2 mg a week (I was on 7mg a day at the time, so 2 mg a week is a minor adjustment). Their approach kept me at 1.8 for weeks which I wasnt happy with.

So with my coagucheck to hand, having learned how this works, I just started doing this myself. Raised it to 8mg per day the next week and I hit 2.1 after four weeks of 1.8. I have been self managing ever since and the INR clinic now accepts this, because I have been in range 90% of the time. They only ask me what my INR Was at last self test every couple of month and which dosage I adjusted myself to keep on their system for emergencies.

Unfortunately you will need to take this in our own hands for optimal results. But the good news is that it is fairly easy. Finally, It took me over a year to adjust to where it is fairly stable. I do wonder whether some of the meds I was on for a while after surgery which interact with warfarin just took that long to get out of my system.

Good luck and I would start to self-test/ self-manage if you are comfortable.

 

[dick0236]

INR keeps dropping, from 1.99 to 1.25 in one week. Increasing my weekly dose by 1 daily dose (3mg) as per instructions given a week ago did not help. Now my family doctor says I should increase weekly dose from 24mg -> 34,5mg = 4.5mg daily. Without much to back it up with, I'm worried this increase still won't be enough. I suppose everything will be fine, but being this far off does stress me out.

I believe you recently had your mechanical valve implanted. INR does some strange things in the beginning. Going from 24 to 34.5 per week is a BIG change. Check your INR every 3-4 days to make sure your INR doesn't spike upwards.

 

[pellicle]

Unfortunately you will need to take this in our own hands for optimal results. But the good news is that it is fairly easy.

what are you saying here?!!

Always trust your doctor (nurse, INR Clinic ... ) we are patients. We are supposed to just be passive slobs.

;-)

 

[pellicle]

INR keeps dropping, from 1.99 to 1.25 in one week. Increasing my weekly dose by 1 daily dose (3mg) as per instructions given a week ago did not help.

it takes time for a new dose to take hold, but having said that your dose is very small. I'd anticipate you need a dose of 6 or so.