Aortic valve regurgitation and anxiety - how to manage?

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pellicle

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d333gs;n882251 said:
Hi, "The primary caveat is don't do things which cause high "hydraulic" pressure on your vascular system (which means weight lifting, not cardio "spinning" type stuff)." During rehab or never again?
Thanks
During rehab
look up one of the members here "the gym guy" he's a champion power lifter
after his mechanical valve too

ok .... here you go
http://www.valvereplacement.org/foru...ther-fun-stuff

I've found the best way to deal with anxiety is look for the truth and reality, not just to believe ij self defeating ideas you may have gathered from whatever sources.

btw, I'm in touch with him from time to time, he no longer posts here much mainly due to the crappy bb software.

its worth noting just how many of the younger doing well with mechanical valvers are self testers. I am and I'm pretty active too (sking cross county 3 or 4 days a week at the moment)

http://cjeastwd.blogspot.com/2018/03/xc-ski-bindings.html
 
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pellicle

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so d333gs some background on me is all well and good, but we have many other active (in life active) post surgery, read up on them by looking around here

not a member here, but..
http://chicagoheartsurgery.com/veronika-meyer-climbs-everest-after-heart-valve-surgery/
Meyer was diagnosed at age 23 with aortic valve disease, where one of the four valves that control the flow of blood to the heart fails to function properly. Her faulty valve was replaced when she was 46 years old by a mechanical device made by St. Jude. She was a mountaineer before her heart surgery, and she climbed the tallest peaks on five continents, including Everest, after the operation.

Thirty years after St. Jude’s first mechanical valve implant, the device is still considered to be a workhorse in the company’s product portfolio, although most surgeons now opt for bovine or porcine valves instead. St. Jude helped sponsor Meyer’s climb.
Also on my blog there is a lot of useful data about self management of INR should you go that way..

another plug for Finnish Ski season

http://cjeastwd.blogspot.com/2018/02...ry-skiing.html
 
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Superman

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There's "recovery", then there's "back to normal". That six month time frame is the one where you maybe start feeling close to whatever "normal" can be defined as. But in terms of back to work, driving, no real issues taking care of yourself - most I've seen are six weeks or less. On your feet? Shoot. I woke up from anesthesia and they stood me right up and put me on a scale.

They want you walking as soon as they can get you up. First it was to the room door and back. Then out into the hall and back. Just a little farther each time. It wasn't long before I was walking laps around the hospital floor. I had to walk up two flights of stairs to be allowed to leave the hospital. Most people are sent home in 5 days give or take a day or two.

After my first surgery, as a teenager, my parents both worked - so I was left home alone a lot during the day. Everything I needed was on the main level of the house along with a phone in close reach. After my second, my wife was still at work and kids were off to school - so I was left on my own a fair amount from my first day home as well. As long as most things were on the main level and I had easy access to a phone and rides to appointments - I was fine.

If you set aside six months, you'll be going stir crazy just itching to get back to things. As it was, I was visiting work just for something to do before my official leave was up.
 

Superman

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mrfox;n882244 said:
Yes the recovery bothers me as well.. really with the operation I'm afraid of the things around it like having a breathing tube, open holes in the chest etc.
The tubes are removed fairly quickly. It's like jumping in a cold swimming pool. The anticipation is the worst. There is an initial shock. But once it's done it's a big relief. The "open-holes" are really just small cuts. They leave a tiny little 1 cm scar is all.
 

Paleowoman

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Hi mrfox - I was really worried about the breathing tube, but in the event I don't remember a thing about when it was removed ! I have a photo dh took of me on the ventilator as I was curious as to what it looked like - I seem very peaceful really in the photo. As for the drainage tubes - they didn't hurt a bit when they were pulled out, the nurse told me to hold my breath and then she pulled them out. I was surpriesed that it was fine. So the thing is your prarticular worry about those things is understandable but you never know, your experience may be fine. When the time comes let the nursing staff know beforehand of your worries.
 

mrfox

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pellicle - that's inspiring stuff, thanks! I've been very active in my life, rock climbing, month long mountain hikes, weight lifting etc - and I'd really like to think I can get back to some of those things post surgery.

Thanks Superman and Paleowoman for the advice regarding tubes and things.

I actually had a cardio appointment today and was told that he think's it's now time to start arranging surgery - so that's big news I guess! Still wrapping my head around it but basically feel positive. It's a borderline case so I will consult with a surgeon first and then discuss.
 

DJM 18

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MrFox good luck to you through your journey and it is great to see the support you are getting from this wonderful community. All heroes in my mind and an inspiration to us all. I thought you would enjoy this blog from a member here who is a firefighter in Colorado and recently had surgery. He has always been very active and is back on full duty.

It is great that you are reaching out and talking to others is important, perhaps you can connect with some heart ambassadors in your area. There are also some great groups of athletes with heart issues that you may want to follow and perhaps one day join.

In any case, here is a link to the blog which is a great read...quite inspiring and uplifting.

https://captaintinman.blogspot.com/p/about-me.html

"Living it up in beautiful Fort Collins, Colorado. I'm a Truck Captain and Paramedic for the City of Westminster Fire Department, just outside of Denver. I have a saint of a wife whom you will surely get to know on this blog, and am father to two super cool daughters, Mackenzie (15) and Maggie (12). Love just about anything outdoors. I run, mountain bike, snowboard, fly fish, backpack, drink delicious Colorado beer on patios, ride my longboard... I'm a lifelong Chicago Cubs fan due to my Midwestern roots and love sports of all shapes and sizes. The main focus of this blog will be to chronicle our journey through heart valve surgery and the subsequent rehab process to get back on the truck. I promise it won't be too serious and is sure to capture some entertaining randomness along the way."
 

pellicle

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Hi

mrfox;n882257 said:
pellicle - that's inspiring stuff, thanks! I've been very active in my life, rock climbing, month long mountain hikes, weight lifting etc - and I'd really like to think I can get back to some of those things post surgery.
totally no reason why you can't ... even as a "warfarin user" I go overseas for months at a time and my self tester comes with me. So its totally just take a pill and 10 minutes a week to
  1. read my INR
  2. write it in the spreadsheet,
  3. consider if any action on dose needs to be taken
  4. put my pills into my daily division week long pill box
not much out of my time for a healthy life. I spend more time cooking dinner and that's every day.
 

pellicle

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PS mrfox

I think its worth mentioning that when surgeons talk to you its not like when people talk to you. They speak in a manner which is couched in "I am legally liable for advice I give". Naturally they also like to have you around to contribute to their stats. I've grown up around this (having had my first surgery at 10 years old) and am used to hearing "you musn't do this and musn't do that.

I've lived my life (54 years so far) taking risks, but making them calculated (well to some degree). For instance all my life I've been told that I should stop riding motorcycles ... yet I still do.
I used to do rock climbing (this is taken tidying up a wall in Finland to make it less likely that the belayer will get showered in gravel)

[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c2.staticflickr.com\/4\/3783\/11311900234_80a35a9d06_b.jpg"}[/IMG2]

work commitments and time / opportunity has been what put me away from that persuit (not fear of the fall and what head injuries I may get ... not that warfarin would make a 60 meter plummet much different)

despite being told to give up motorcyles (again) by my surgeon (because this time you're on warfarin) I still enjoy my riding too much to do that. My view is that I may as well slit my wrists and take the exit if life is not for living ..

My current bike is this one
[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c1.staticflickr.com\/5\/4794\/39808416115_20d3c8014f_h.jpg"}[/IMG2]
which may not seem as hot as many of my others, but its so much fun and so low maintenance I have now had two of them in a row (never done that before) and done over 150,000Km on them cumulatively.

So, read between the lines, and life goes on as it did before ... I'm sure you can always find people who'll tell you that "what you do is crazy".

Best Wishes and think positively
 

mrfox

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Thanks pellicle and DJM 18 ! Inspiring stuff. I'm still wrapping my head around it all but these active life stories are important. I'm determined to live a full life! Just need to set my business up for me taking a 6 week break now...
 

DJM 18

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mrfox;n882267 said:
I'm determined to live a full life!
That is the spirit !!! It really bothers me when BAV is referred to as a disease, I see it as a condition which if need be can be treated with excellent success. When you think of all the people who have a bicuspid valve, you do not think of these people as being sick from some disease:

Arnold Schwarzenegger
CDF Huber - Pilot flying a F/A 18 at +8 and -2 g's / had VSARR and ran 1/2 marathon 6 months later
Aaron Boone - Baseball player now manager
Fred Hoiberg - NBA Player now NBA coach
Pellicle - Always an inspiration
Eric the firefighter from Colorado
Stefan Struve - "bad ass" Mixed Martial Artist / Competes as Heavy Weight in Ultimate Fighting Championship
Michael Rogers - elite biker / Won a tour the France stage
Torbjørn Sindballe - Ironman elite athlete (there is also a woman whose name I forget)

and if it comes to surgery, there is nothing stopping you from a beautiful (and VERY active life)...here is my personal favorite story.

Veronika Meyer Climbs Everest After Heart Valve Surgery


When Veronika Meyer reached the top of the world at 4 a.m. Wednesday (Nepalese time), she tried to retrieve her camera, tucked near her chest. But her snowsuit zipper had frozen shut, so a fellow climber took some snaps instead.

Luckily Veronika Meyer’s mechanical heart valve – made by Little Canada-based St. Jude Medical Inc. – was working full-force. The 56-year-old Swiss chemist is believed to be the first climber implanted with a heart valve to successfully ascend Everest.

“Conditions were excellent this year with a lot of snow, but in addition, all of us were strong,” Meyer said in an e-mail to St. Jude on Thursday.

This was Veronika Meyer’s fourth try in the Himalayas to scale the world’s tallest mountain, which is 29,033 feet above sea level. She already had climbed the highest peak on each of the world’s six remaining continents.

But until this week, she was thwarted by Everest every time. On two occasions Veronika Meyer turned back because of dangerous weather, and last year she suffered from flu-like symptoms unrelated to her heart condition. Three years ago, her expedition was canceled, and she never left Switzerland.

This time around, conditions on the mountain were favorable – at least for Veronika Meyer and her team. A few days earlier, two South Korean mountaineers died after being hit by falling rock on the southwest wall of Everest while trying to find a new route to its peak.

Since New Zealander Edmund Hillary and Sherpa Tenzing Norgay first conquered Everest in 1953, about 2,000 climbers have scaled the mountain. Another 205 people have died on its slopes.

Meyer was joined on the summit by an expedition leader, also from Switzerland, a Norwegian climber and two Sherpas, or local guides. They lingered at the summit for just 15 minutes, planting a flag bearing St. Jude Medical’s logo, before heading back to a base camp at 27,200 feet where a “great kitchen and nice personal tent” awaited, Meyer wrote.

Meyer was diagnosed at age 23 with aortic valve disease, where one of the four valves that control the flow of blood to the heart fails to function properly. Her faulty valve was replaced when she was 46 years old by a mechanical device made by St. Jude. She was a mountaineer before her heart surgery, and she climbed the tallest peaks on five continents, including Everest, after the operation.

Thirty years after St. Jude’s first mechanical valve implant, the device is still considered to be a workhorse in the company’s product portfolio, although most surgeons now opt for bovine or porcine valves instead. St. Jude helped sponsor Meyer’s climb.

“Veronika’s amazing accomplishment should offer inspiration to millions of heart-valve patients around the world,” said George Fazio, president of St. Jude’s cardiovascular division. “Despite living with a heart condition for many years, she has refused to accept limits and has pursued her goals with tremendous courage and determination.
 

COfireftr

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DJM 18;n882259 said:
MrFox good luck to you through your journey and it is great to see the support you are getting from this wonderful community. All heroes in my mind and an inspiration to us all. I thought you would enjoy this blog from a member here who is a firefighter in Colorado and recently had surgery. He has always been very active and is back on full duty.

It is great that you are reaching out and talking to others is important, perhaps you can connect with some heart ambassadors in your area. There are also some great groups of athletes with heart issues that you may want to follow and perhaps one day join.

In any case, here is a link to the blog which is a great read...quite inspiring and uplifting.

https://captaintinman.blogspot.com/p/about-me.html
Wow, I am absolutely humbled that you would use the word "inspiring". I'm just a normal dude that has been inspired reading all the stories on here for years. People like you taking the time to encourage total strangers is inspiring. Thanks for taking the time to say those nice things and for reading the blog! The adventure has been fun for my wife and I to write about. The actual surgery was probably the most uneventful part of the whole process!

To mrfox and others on the original topic of anxiety and fear of the unknown. We've all been there. For me it was a 10 year roller coaster ride knowing what was looming. I managed to live life to the fullest, continuing to do all the things I loved. I ran a marathon and a bunch of other races with moderate-severe regurg, mountain biked, snowboarded, thrived at work. Heck, we celebrated my last day before surgery riding big roller coasters at Cedar Point since our summer vacation was to the Cleveland Clinic.

With all that being said, it wasn't always easy. For me the anxiety always hit in the weeks before my cardio visits until a week or so after. I posted on here several times through the years feeling anxious and scared. Sometimes I had to force myself to get away from the information overload of the internet. Man, I could will myself into symptoms that didn't really exist. Once diagnosed it's just natural to become hypersensitive to every last sensation and immediately link it to your bad valve.

Now that surgery is over and I'm back to my normal life, I realize that so many of my fears were totally natural, but so not necessary. I now feel so fortunate to have had that time, as anxiety inducing as it was, to do good research and figure things out on my terms. I'm blessed to have had the time to research surgeons and procedures, as well as prepare my family and job for what was to come. By the time surgery day arrived, I knew I was making the right choice and the timing was right.

Recovery hasn't always been easy but the process has been fun in a sick way. How many times in your life do you get to step away and just focus on your health? I had fun pushing myself to the max and making it a challenge to see how fast I could get back to full duty at work and full duty recreating at home. Cardiac rehab was seriously enjoyable and I still miss it. As for timing, I was back to full duty firefighting in 5 months or so, but really could have been sooner. I was fully functioning

I echo what so many of the great people on here have already said. Get out there and live life! You'll do more harm to your body and mind by sitting around being sedentary than by pushing that slightly blemished ticker. Believe me, the heart is resilient and is really good at compensating for a simple mechanical problem. It wants to be worked (under good medical guidance of course). Best of luck on this journey!

Eric
 

pellicle

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Hi

COfireftr;n882280 said:
Wow, I am absolutely humbled that you would use the word "inspiring". I'm just a normal dude that has been inspired reading all the stories on
I suspect that every Emergency Services person (in Australia that's Police, Firefighters, Ambulance and SES) are often surprised to hear that of them selves when they were just doing what they do. Same goes for members of the public who step in and provide assistance.

But what you do and your story can indeed provide inspiration. I hope that being "humbled" was also a positive experience for you, learning how you can be an example for others.

Messages like this:

Now that surgery is over and I'm back to my normal life, I realize that so many of my fears were totally natural, but so not necessary. I now feel so fortunate to have had that time, as anxiety inducing as it was, to do good research and figure things out on my terms. I'm blessed to have had the time to research surgeons and procedures, as well as prepare my family and job for what was to come. By the time surgery day arrived, I knew I was making the right choice and the timing was right.

Recovery hasn't always been easy but the process has been fun in a sick way. How many times in your life do you get to step away and just focus on your health? I had fun pushing myself to the max and making it a challenge to see how fast I could get back to full duty at work and full duty recreating at home. Cardiac rehab was seriously enjoyable and I still miss it. As for timing, I was back to full duty firefighting in 5 months or so, but really could have been sooner. I was fully functioning
are really important to those in the waiting room too. They have been said before but somehow they will always need to be said too.



Get out there and live life! You'll do more harm to your body and mind by sitting around being sedentary than by pushing that slightly blemished ticker. Believe me, the heart is resilient and is really good at compensating for a simple mechanical problem. It wants to be worked (under good medical guidance of course). Best of luck on this journey!

Eric
well said and Hats Off to you

:)
 

mrfox

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Thanks for your replies everyone.

As I mentioned earlier my last cardio visit (on Friday) saw my doctor recommending surgery. I will see a surgeon tomorrow (Monday) and we will discuss options. I'm also now on ACE inhibitors for the blood pressure. I'm kind of excited to be moving things forward though it's not quite a done deal yet.
 

DJM 18

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mrfox, great to see that you are starting to look past the surgery. It might make sense to ask your surgeon about a repair, if it all a possibility in your circumstance. It means a second OHS but can also mean 10+ to 20+ years with your native valve. There has been tremendous progress with bicuspid valve repair and there are a few centers in Europe with significant experience. It is important to have an experienced center with a very experienced surgeon in repairs. If you want, I can send you some literature from some European based centers that have helped advance valve repair in significant fashion over the course of the past 20 years.
 

leadville

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Best of luck with everything Mr Fox, our brains usually build things up worse than they actually are, it's a journey
and only you can travel yours but take comfort in the fact that we are stronger than we think.
I was concerned about post Op activities too, I used to compete in powerlifting but i am not brave enough to do it now like the gymguy youtube video
that valsalva manoeuvre spikes the BP.
however i still lift a moderate amount in the gym, i still Squat & Bench , i race mountain bikes, run & Hike all to a level equal to or often better than pre Op.
I was fully active 3 months ish after my surgery apart from lifting in the gym, i was jogging at 6 weeks just ease yourself in slowly and try to enjoy your journey.
 
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DJM 18

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EasterRat I am curious as to why they are saying your repair would only last 5 to 7 years. A few fail early but the numbers are getting to be very good in many instances, Cleveland is now at 91% freedom from ReOp at ten years with a BAV and this number is steadily getting better as they gain more experience with the procedure. And there is then some well founded hope that if you get to ten years in good shape you have a solid chance of then getting to 20+ years, which is something that a replacement biological valve does not give a young (30s / 40s) patient. I am actually amazed at the number of centers that are now doing BAV repair, something that as recent as ten years ago was limited to a few very select centers.
 
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