(Yet Another) Mechanical/Tissue Dilemma – 37 years old with ticking clock

[stephenismycopilot]

Hi, guys. This site has already helped me feel a bit better about The Big Crack, coming up in just six days. Here's my deal (and plea for advice):

My cardiologist and surgeon are split on whether I had a hidden congenital defect that suddenly went haywire or if I had some mystery infection I didn't know about, but sometime in the past year, my aortic valve began failing rapidly: aortic valve regurgitation, and it's running at about 50% now, which is shutting my heart down. I had no symptoms, and it was a routine check-up that led my GP to send me immediately down the hall to cardiology for an EKG. After that, things happened fast: umpteen echos, a TEE, cath angiogram, CT scan, dental exam for surgical clearance; all within the last couple weeks. Surgery is scheduled for the 21st. My cardiologist told me it was kind of a foregone conclusion that I'd get a mechanical valve, so I didn't weigh the options too much. It wasn't until my first consult with the surgeon yesterday (I know, things are moving very fast indeed) that he presented a bovine valve as an option. It was in that same consult that he... didn't try to talk me out of mechanical, per se, but did explain to me what sounded like the life-ruining horrors of Coumadin. The constant monitoring. The risk of stroke. The risk of internal bleeding. Etc. He told me to take the week to read up and think about it and let him know the morning of the surgery which one I wanted. Talk about pressure, right?

I lead a fairly active lifestyle: lots of walking, hiking, weight training. My job can be physically demanding. I enjoy time outdoors. I also love food, and I'm scared of limiting my diet and losing my ability to prepare or order meals spontaneously. I am also heavily tattooed with more planned, and I'm not keen on never being able to get another. Taking a pill every day shouldn't be an issue, but he also said I could basically never drink again. Now, I enjoy whiskey and Scotch, hoppy craft beers, dry wine. Admittedly a bit too much, as my liver enzymes are elevated and my GP has told me it's time to cut way back anyway. But the surgeon said I'd be essentially limited to one beer a week for the rest of my life, have to restrict and closely monitor my diet, should not partake of any cannabis (I'm in California, where it is recreationally legal, and I mostly partake of edibles and vaporized dry herb) and will be always at risk of stroke or internal injury. This is my first major health problem in my life, my first surgery, and I can't tell if I'm focusing on the doom and gloom instead of making a measured decision.

I've read lots of posts on here from both pro-tissue and pro-mechanical, which while encouraging have not really helped push me in one direction or the other. And the quickly approaching surgery date isn't helping matters! I'd love any wisdom/experience you could share based on your own experience with similar lifestyle/age. Like many other folks, the idea of TAVR appeals to me; the idea of another OHS before I even turn 50 does not.

Thank you guys so much for making this page. I'm so glad Google brought it to me when it did, and I'm grateful to have a place to come back to for advice and encouragement as I go through recovery.

 

[DachsieMom]

I was 41 (almost 42) when I had surgery. For me, Coumadin is a non-issue. I eat what I want (even broccoli and spinach, and not in consistent amounts) and just adjust the warfarin dose if needed. I don’t really drink so I’m not the best advice giver there, but I have a glass of wine occasionally and have no impacts. I run, bike, and do what I want physically, although snow shoveling and very heavy digging in the garden is much harder for me now (not at the time, it just makes me feel really crummy a few hours later). The thought of another surgery was enough for me to want mechanical, but I dont really recall my surgeon even discussing the other option. I prick my finger once a week, sometimes once every two weeks. That’s it.

 

[DachsieMom]

I should add that many others are fine with activities like heavy digging and shoveling. I’m pretty tiny - about 99 lbs - so maybe I’m just getting old!

 

[dick0236]

My own experience with warfarin(52+ years) is that it has interfered little with my life, lifestyle and diet. Given the probability of multiple tissue valve surgeries versus the minimal effects of warfarin on my life, I'll take the warfarin "hands down"....... every time.

 

[stephenismycopilot]

Thanks, guys! The surgeon said that ten years ago, he would never suggest a tissue valve to someone my age, but the technology should make things easier in the future. But I've also read from some folks on here that said technology was promised them and didn't catch up in time. The thought of going through all this again in ten years is... *shudder*.

 

[LoveMyBraveHeart]

Hi!

My fiance has had 3 OHS. He is 26 years old. His first was a tissue valve, because he was concerned about the effects of warfarin on his lifestyle...he rides dirt bikes, likes to drink, its clumsy and heard scary things about taking warfarin. The tissue valve failed in about 3 months. After going through the recovery process the first time, he was completely team mechanical valve as he never wanted to go through OHS again.

Round two, he chose a mechanical valve. He is able to drink, admittedly not as heavily as he once did, but just the other night he had four stiff margaritas on a snow day we shared together to no ill effect.

We live in Washington and also use cannabis recreationally. His interventional cardiologist that tried to repair his tissue valve percutaniously actually told him marijuana is totally fine, however as a doctor could not recommend smoking it, but edibles are ok. Fiance has had multiple orthopedic surgeries in the past and uses marijuana for pain management when he has flare ups. He does not like to take pain medication.

He also eats all he wants, he actually just bought a big bunch of kale today to put in some kale and white bean soup for dinner. Decided that on a whim, no warfarin adjustment necessary.

He also has plans for more tattoos and asked a friend of ours who is an artist. The artist explained that he has tattooed many people on anticoagulants that he knew of, certainly many others that never disclosed their anticoagulation status. He said the only difference he has seen is that color pieces heal muddier than black and white, but otherwise it's like tattooing any other person.

Like you, he went in to the dr. For a check up and was promptly referred to a cardiologist. The cardiologist ran him through a stress test that he never fully recovered from. He was admitted to the ER the following day, where he was diagnosed with a bicuspid moderate leaking aortic valve, and an ascending aortic aneurysm. More testing followed and he was scheduled for surgery about 2 months after diagnosis, with no prior knowledge of any sort of cardiac deficit.

While I understand your surgeon outlining his concerns about anticoagulation therapy, I think he may be misguiding you. There are risks with any medication...hell, there are risks just living life. Do mechanical valves put you at higher risk of a stroke? Yes, if you dont follow anticoagulation as you should. Does it put you at risk of internal bleeding? Yes, just as taking ibuprofen would. Life comes with risks, please dont let a single medical professionals personal opinion about coumadin sway you too far one way or another. My honey still does everything he did before surgery, only now he feels better doing it!

You're gonna be successful regardless of what valve you choose. Just go into it armed with as much info as you can and dont be afraid to question cardiologist, surgeons, primary care doctors, etc. At the end of the day, you're the one living with the new piece of equipment in your heart (whether mechanical or tissue), and you're the one living your own life. No need to pussy foot around, your life will be just about normal, you might just need to take an extra pill or two. Everyone here is so exceptional about providing all the information you can ask for. Very good luck and well wishes to you.
Much love,
Jill

 

[pellicle]

Hi
if you've lurked here before you've undoubtedly read a post or two of mine (perhaps even some good ones ;-) so rather than give you the long answer I'll just address this point you made:

The surgeon said that ten years ago, he would never suggest a tissue valve to someone my age, but the technology should make things easier in the future. But I've also read from some folks on here that said technology was promised them and didn't catch up in time.

my view is that Surgeons are by and large very concerned about how well you do after surgery, but they don't usually look 10 or more years down the track. When I had my 3rd OHS I was 52 (this was 2011) and my surgeon is a pragmatic fellow, his view was that "surgeons will not be lining up to do your 4th because it will be very complex and dangerous." That was unsurprising to me. Now I don't know enough of your details for a full analysis but I could understand why someone would swing either way on your particulars (of which I know little about).

The main problem with having a mechanical is "you can't trust the patient". By this I mean what the medical area calls "patient compliance" which means taking their warfarin. Another factor is warfarin is a narrow theraputic window drug, so you need regular testing and be able to interpret results and make decisions (not hard but don't underestimate the capacity for a Clinic to phuck that up).

Of the advances which have emerged is technology to enable patient self testing and in my case patient self administration. Myself I believe strongly in this (because there's not just my own good experience theres a lot of research data to back this up) and it will give you better outcomes.

If you haven't already found this, I suggest you listen to this presentation segment


let me know if you want the full version.

Lastly if you want to get into self management (and you can if you wish to) then my blog has some good stuff on that for you. Eg
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
Best wishes

PS: I recently heard a presentation where the researcher decided that a new better term was needed for Patients. She proposed People. Suddenly that made it harder for clinics and clinicians to abstract you out to a label.

 

[stephenismycopilot]

This is very helpful information! Since you're coming up on a decade with your valve, how often do you see your cardiologist for a check-in? Yearly ultrasound? Are they ever vigilant for the presence of possible clots? Thank you!

 

[pellicle]

Hi

Since you're coming up on a decade with your valve, how often do you see your cardiologist for a check-in?

about every 2 years ... he's thinking of extending that to a longer period because so far everying is stable

Yearly ultrasound?

it was every year, then after 2 of those were fine became every 2, now we're looking at every 4.

Are they ever vigilant for the presence of possible clots? Thank you!

LOL ... what are you even saying? I've never once ever had a test (d-dimer) for possible clots. The ever vigilant is me.

I myself maintain my INR, my cardiologist looks at my data (graphs from my yearly summary of weekly tests) and says "no clinic does this" ... then we talk about his expresso machine.

I often phrase it this way: "if you want to be in the hands of fate, get a tissue prosthetic, if you want to be in your own hands get a mechanical and learn how to keep it in good order ... it will then most likely outlast you"

 

[pellicle]

PS: @stephenismycopilot
my 2011 surgery went well, but I suffered a small setback (in the scheme of things) with a post surgical infection (the more surgeries you have the better the chances right). Recovery is not always straight foward, neither is life.

However (me being who I am) diligent application of views led me to be able to be cross country skiing again in time.

because you've either got to get busy living or get busy dying(shawshank redemption quote).

So since then I alternate between this place:

and this place

and do what I find entertains me



because one is a long time dead IMO



I believe you'll be fine ... and you'll make your way through many more years

Best Wishes

 

[LoveMyBraveHeart]

PS: @stephenismycopilot
my 2011 surgery went well, but I suffered a small setback (in the scheme of things) with a post surgical infection (the more surgeries you have the better the chances right). Recovery is not always straight foward, neither is life.

However (me being who I am) diligent application of views led me to be able to be cross country skiing again in time.

because you've either got to get busy living or get busy dying(shawshank redemption quote).

So since then I alternate between this place:

and this place

and do what I find entertains me



because one is a long time dead IMO



I believe you'll be fine ... and you'll make your way through many more years

Best Wishes

Pellicale wins again!

 

[AlaJim]

Hi!
In March of 09, I was almost 61. I learned that my mitral valve was in flail and OHS was necessary immediately. Repair was not possible so I now own a St. Jude mechanical. After recovery from the surgery, painful but short, I learned to appreciate waking up each morning hearing a comforting clinking sound in my ears. That sound set the stage for planning my day. In the years since the OHS, I've continued goat farming, bicycling, mountain hiking, Tai Chi, wine and beer making and drinking, making pilgrimages to the distilleries in Tennessee and Kentucky and many private distilleries in the woods. Farm work includes cutting and splitting the annual fire wood supply. The vineyard is nearly a full time job especially during the pruning and picking/crushing seasons. I love my beer wine and bourbon and get some every day. For the 10+ years that my mechanical valve has ticked, I've continued doing all the things that I did when I was younger only better and with greater joy.

My daily dose of warfarin is a life giving privilege not a life in prison sentence. I get to take it because I'm alive and it keeps me that way. Home testing is no issue and really a no brainer. Like others here, I keep track of my INR test results and warfarin intake. My only issues have been slight bruising and occasional bleeding from cuts and scratches. For several years, I traveled extensively. Variations in restaurant and hotel helped me learn how to use my own diet to keep with in 2.5 and 3.5. It's not a big deal to add and control one more variable in daily living. Get on with it and enjoy!
Jim

 

[mecretired]

Warfarin is a nonissue for me. I do what I want and pretty much eat what I want. I have my own meter and check my inr weekly. I couldn’t leave the hospital after my surgery until I watched a video about the effects of warfarin. That video scared me to death. It led me to believe I could bless to death fro a small cut. Absolutely not true. You don’t bleed worse—just a little longer. As long as you keep your inr in range you are no more in danger of a stroke than anyone else.

 

[tom in MO]

I like your bat. If you like bats join Bat Conservation International. I'm a member. They help protect bats and educate people and it's a global conservation group.

I echo what the others have said. Warfarin is not close to being a "big deal" as your surgeon says. Surgeon's don't usually handle warfarin therapy, it's the cardiologist who manages your warfarin or your general practitioner. Ask your cardio if you want better advice.

I didn't see your age, but unless you are >55 or die young, you probably will have to have your valve replaced, tissue valves wear out. When the valve fails is not known, some people it lasts 20+ years others 4-8 years. This means with a tissue valve you need to keep good health insurance and may suffer a period of physical decline until your tissue valve is replaced. You will need to go in for routine echocardiograms to monitor your valves performance. Often it is yearly for tissue valves, for mechanical valves, every 5-7 years. You might want to ask your cardio if there is any higher risk with tissue valve failure given they do not know what caused your birth valve to fail. I picked mechanical because I hate operations and work in a field where my insurance may not be secure.

On warfarin, I eat what I want and partake in alcohol. Your surgeon is dead wrong about alcohol. Per my cardio and a pharmacist who gave me warfarin training, the biggest risk is getting so drunk you puke out your medications or falling down and injuring yourself. On warfarin, your blood will take 2-3 times longer to coagulate, thus any bruise, cut, etc. will take longer to stop bleeding. On warfarin, you may want to give up full contact karate w/o a helmet My biggest complaint about warfarin is not being able to take Non-steroidal Anti-Inflammatory drugs (NSAIDs) for arthritis. The most I can do is an over the counter dose of ibuprofen for not longer than 2 months. On warfarin many people self test, this is an additional expense, but minimal compared to surgery and doesn't take more than 15 min every 1-3 weeks.

 

[pellicle]

Pellicle wins again!

It may seem not the case, but I actually do not prefer to be sharing myself with strangers on the internet, however in the private (anonymous) confines of this forum I do talk about myself and my inner feelings because to me that's the only way to give credence to someone who is suffering and asking for guidance. I believe I've not just looked into the pit, I've sat at the bottom. It has been a long climb out and I'm not happy every day all the time.

I guess that what I"m trying to say with my post is after surgery we are all winners, and that no matter what happens (and I won't deny I felt very bad for a long time) that we can aim towards choosing to be happy and working our way there.

I had many motivations for doing what I have done since 2012, almost none of them tangible in any way or directed by others.

I think Seneca phrased it well for me

to enjoy the present, without anxious dependence upon the future, not so disturb myself with hopes (for things I can not have) or fears (of what may never eventuate).

I live without hope but in a way sort of taking a few threads from Zen attempting to savour the now. Yes, even at work.

PS: I fixed your spelling of Pellicle

 

[LoveMyBraveHeart]

I guess that what I"m trying to say with my post is after surgery we are all winners, and that no matter what happens (and I won't deny I felt very bad for a long time) that we can aim towards choosing to be happy and working our way there.

I agree, by win, I mean you've won the battle against a set back, as many on this forum have! We all have demons to fight, and I like to celebrate small successes just as much as the big ones.

 

[pellicle]

and I like to celebrate small successes just as much as the big ones

agreed ... its that recognition of success that's critical. Without it sets in a vision of only the bad things or the failures, which leads to the sort of grounds in which stuff like "Imposter Syndrome" can grow.

Best Wishes

 

[francisk]

Hi all,
I have been visiting this site for the past three years, after I underwent my OHS for Aorta Valve replacement at 68. I learned a lot from members of this forum, especially from Pellicle, his life story, his experience and advise, and his outlook on life, is an inspiration to us all.
Based on my surgeon’s recommendation, I accepted a tissue valve. We made that choice mainly because of my age and my medical history, I am a liver transplant recipient for 16 years and a type 2 diabetic patient. It did bother me a bit when the surgeon told me that a tissue valve last only ten years on the average. Then he showed me a beautiful shiny mechanical device, telling me that it was for TAVR in case that I shall outlast the tissue valve, I was totally sold.
The surgeon did the right thing by recommending a tissue valve in my case, due to my age and medical history, but there is a third factor that he missed, I am the most undisciplined person around. I am sure that I will be missing my dosage of Warfarin from time to time, and never give a hoot about it. If these three factors do not exist, I definitely will go for a mechanical valve.

 

[pellicle]

Hi

thanks for the kind words.

Then he showed me a beautiful shiny mechanical device, telling me that it was for TAVR in case that I shall outlast the tissue valve, I was totally sold.

interesting, I've never seen a mechanical that was for TAVR ... did you recall the name ?

I'm not sure if you're on warfarin or not but a missed dose here and there won't bring you to any harm.

Best Wishes

 

[johnmarkos]

My surgeon said, "You may not want to pursue a professional career in extreme sports, but other than that, you can do anything you want."

On warfarin, you may want to give up full contact karate w/o a helmet