First Surgery Coming Up, And Afraid

[dornole]

that's my concern, is that because these studies are on older people, is it safe to assume that my chances of even getting to the average age these studies are done (50/60) would be slim to none?

What? No, because the studies are done on frail old people, young vigorous folks like you are going to have much BETTER surgical outcomes than average.

Your job right now is to let them give you lifesaving surgery. Personally I concentrated on being as cheerful and appealing as possible so they would do their best for me, and my husband kept saying “we’re fully insured!” For me it was all so sudden I just was in a state of wonder (“I have heart condition- say what?” - I was 34) and after I was like “Hot damn, I’m still alive! Woo hoo!” I did also feel a totally unexpected wave of assurance that things would work out as I was wheeled into the operating room and that helped my feel calm.

You’re not doomed, pal, nobody can guarantee health and long life, but you’re borrowing trouble in assuming this means a life of decrepitude and early death. It’s just not true. Personally I like black humor as a coping strategy along with just accepting that whatever comes, comes and I’ll deal with it as needed. Get thru surgery and let the future take care of itself. Cross the next bridge when you come to it. By then you too will have more chill and more skill at handing health issues.

 

[Superman]

I think you misunderstand what he's saying.

Right.

If one is 70 and has 10 years left after surgery, that IS normal life expectancy on average. One cannot take that decade and say, “I’m having surgery at 17, therefore I can only expect to live to 27 because study A said ten years.” It’s just not apples to apples.

 

[Yahtzee577]

Thank you all for the encouragement. It helps a lot. Just sort of spooky as I also have epilepsy (albeit well controlled, generally have seizures as I'm waking up, and last one was a little over 6 years ago on barely any medication). Warfarin management and epilepsy management is actually quite similar in that you need to get tested occasionally to make sure you're within therapeutic levels. So when it comes to taking warfarin, its really a non-issue for me

 

[dick0236]

Warfarin management and epilepsy management is actually quite similar in that you need to get tested occasionally to make sure you're within therapeutic levels. So when it comes to taking warfarin, its really a non-issue for me

Your experience with monitoring epilepsy will help you in establishing a routine for INR management......except you will need to strike the words "test occasionally" and replace them with "test weekly, or bi-weekly". Warfarin is a drug that "takes no prisoners"......if you screw around with it it can bite you....hard. I know because when I was early in recovery (age 34) and not well-versed in ACT.....not even the doctors were in 1984, I had a stroke that I carry the remnants of today.

Will you live to be 80? Who knows, but you are certainly not going to live that long without corrective surgery. My docs told me I would be dead by forty without a valve replacement.......so this surgery has literally more than doubled my life expectancy........and we are still counting.

FWIW, my cardiologist age+/- 60, after my recent annual exam, told me he hopes he is in as good a shape as I am when he is 87. I think he was "blowing a little smoke" but who knows?

 

[pellicle]

So when it comes to taking warfarin, its really a non-issue for me

cool ... and I'd change the passive voice "get tested" and make it "need to test" (I just tested my INR a few hours back (2.8) I do this weekly.

Reach out when you've started and I'll help you get going.

 

[pellicle]

when I was early in recovery (age 34) and not well-versed in ACT.....not even the doctors were in 1984, I had a stroke that I carry the remnants of today.

its a shame that it took so long to get sorted out (heck, even 10 years ago I was still reading stories where people were struggling with stupid clinic policy. But we had to start somewhere.

I'm glad that the pioneer generation is still with us.

 

[Gail in Ca]

You can choose to live a great life in between the stuff that could be thrown at you! I was 34 when a cardiologist said I had a 6 cm aneurysm and leaking aortic valve. My very first thought at that appointment was, ‘Holy crap, I’m going to have a scar’! Of course, after that I stopped doing anything, like vacuuming, that I thought would be bad for my aneurysm. I tend to be a positive person even though I worry about stuff.
Each time I awoke from OHS I was thinking, ‘ I’m awake, I survived!
Then you recover and go about living as before. I had 3 surgeries in 20 years. I lived in between those as a normal person. I was married, raised my daughter, showed a dog, and performed with a fantastic wind ensemble and orchestra. I traveled, exercised, gardened,
had bbq’s. I recently had another brick thrown at me with a hemolytic anemia diagnosis. So, here I go again.
Will I live to see 101, as my recently departed Mom did? I don’t know and can’t dwell on that kind of thinking.

 

[treichert0312]

Might need to stop reading white papers & just go for a walk. I was in good shape when I had my OHS and that helps the outcome personally. But I am an outlier too.
I’m thinking the studies are mostly based on people whose life choices put them in the situation not something they are born with.
I am a 55yo going to Children’s hospital for the congenital cardiology doctor. The replacement valve population is small but I don’t know exact size.

 

[newarrior]

Ultimately, how do I do it?

The answer for me is quite easy. Because I’m blessed beyond compare. Dude. I’m alive. Seriously. Read that again. I’m alive. I should be dead. All of us here would probably be dead if we lived 70 years ago. It’s that simple. For me, this is all “extra” time that only a teeny weeny fraction of a fraction of the course of human population has ever experienced and benefited from. It’s like you’re playing a ridiculously hard video game and get “time extended” and you’re like “What?!?! Woohoo!!!! Heck yea!!!!”

Every day that I wake up I am thankful. It’s easy to go on. Not only because of the perspective that I should be dead … but also because I’m so so so so so ALIVE and can do so so so so so much.

I can walk. I can walk long distances. I can jog some of that. I can take my dogs out. I can hang with my wife and do whatever. I can work on my vehicles and my house. I can go target shooting and have no issues with large caliber firearms. I can volunteer in my community and help others. I can spend time with family. I can work at my job. I can. I can. I can.

I can.

And that’s the major point.

Heart surgery for me was huge. HUGE. Biggest and scariest thing ever for me. But I did it. And I got “time extended” … and now I can exercise the “I can”.

You can too. And you will. And you’ll reflect on things and then say “wow - I’m alive - and I’m still here able to be in this game of life”

I also pray daily and give thanks to my Creator (no, not my Mom and Dad pellicle, lol). For me that was key. But for some it’s not at all on their radar and they do well too. So make it like you like it. And enjoy your “time extended”.

What if we have other medical issues on top of the cardiac that are already restricting our lives ?

 

[newarrior]

I am not born with from birth but I believe high LPa caused my as and at age 60 facing AVR. My lifestyle has been healthy. Also always had low HDL, family has history of heart disease, early death, high LDL, sudden heart attacks, hypertension--some of it lifestyle mostly genetics

Might need to stop reading white papers & just go for a walk. I was in good shape when I had my OHS and that helps the outcome personally. But I am an outlier too.
I’m thinking the studies are mostly based on people whose life choices put them in the situation not something they are born with.
I am a 55yo going to Children’s hospital for the congenital cardiology doctor. The replacement valve population is small but I don’t know exact size.I

 

[Chuck C]

What if we have other medical issues on top of the cardiac that are already restricting our lives ?

I’ve yet to meet the person over 50 who’s medical profile listed “none” as the answer to Existing Conditions.

By the time we’re over 50, most of us have a pretty good list of ailments- some that we’re born with, some that we’ve acquired. Best to accept the hand that we've been dealt and make adaptions where we need to.

 

[Yahtzee577]

I think what concerns me most is falls, as someone with epilepsy I cant help but worry that going forward I'll be unable to take any sort of hit without it being like instant game over (if I'm taking warfarin forever)

 

[Chuck C]

I think what concerns me most is falls, as someone with epilepsy I cant help but worry that going forward I'll be unable to take any sort of hit without it being like instant game over (if I'm taking warfarin forever)

That might be a good reason to consider a tissue valve, even though the guidelines would call for a mechanical valve.

 

[dornole]

I think it’s worth def raising the issue with your care team - but it sounds like your seizures are fairly well controlled now and happen when you are waking up if they occur? Like in bed lying down, or are you taking a heavy fall and getting a concussion? Im sure others here can weigh in on how risky it is or isn’t to fall if on warfarin and what did or didn’t happen to them.

 

[Yahtzee577]

I've never fallen hard enough to cause any permanent damage, at most a bruise on my head and a bit tongue. It's pretty rare actually for people with epilepsy to fall hard enough to cause severe damage but that risk is there.

 

[dick0236]

I've never fallen hard enough to cause any permanent damage, at most a bruise on my head and a bit tongue. It's pretty rare actually for people with epilepsy to fall hard enough to cause severe damage but that risk is there.

FWIW, I am a senior (87+) and have developed a "senior" balance issue in the last few years. I have been on warfarin for a long time (56 years).
About a month ago I had a hard fall down a grass bank. It hurt badly and after a week I saw my doctor. X-ray showed 3 fractured ribs. Surprisingly I had NO bruising at all.......and my INR was 3+ at that time. I try to keep it a little above 3.

I have had a number of bumps and cuts over the years but few that required more than first aid.......and a few that needed a few stitches.

I think someone once said...."God looks after children, drunks and heart valve owners".

 

[pellicle]

Hi

cant help but worry that going forward I'll be unable to take any sort of hit without it being like instant game over

Each is different, but a good friend of mine is a pharmacist, a couple of his patients are on the "novel anticoagulation therapy drugs" as they have had strokes. This stuff can not be monitored for coagulation intensity.

It's related to you because they have falls.

One broke his nose and was in dialysis for 2 days to change out his blood to establish coagulation.

It's not simply "light's out" as you put it.

So given the importance of actual information in making an informed decision, make sure you openly and clearly discuss what all of your concerns are. Doing it here before seeing the specialist can maximise what you get from that conversation.

Well managed INR is low risk and is quickly reversible at an ER

 

[Gail in Ca]

I recently tripped on a raised portion of sidewalk while walking my fox terrier.
I was going to fall and couldn’t stop it. Thoughts rushed thru my head and I wrangled my body so my head hit the grass next to the sidewalk. My dog yelped as I had yanked her leash while falling. I lay there a bit and then slowly sat up and assessed my situation. My knee and elbow were bleeding, I had grass on my jaw. I stood up slowly and realized I was totally alone, so I just started walking. I went to urgent care to be checked out since my neck and back also had started hurting. Nothing broken.
The next day I noticed a 2” bruise on my upper chest where I guess I hit the sidewalk. I hadn’t fallen like that since I was a kid skate boarding. I’ve been on warfarin since 2000. My elbow and knee bled for a couple of days.
I felt silly for tripping but it also brought me into reality that I’m getting older and better start working on my strength training again!
That’s my fall story.

 

[JaneF]

Proud owner of a mechanical mitral valve here and taking warfarin for 6 years. I’ve never been considered graceful and have had several hard falls, one required surgery to repair a torn rotator cuff. I have tripped over pets, toys, doorsteps and my own feet, so I am constantly bruised. My cardiologist like my INR between 2.5 - 3.5 and sometimes I do have small cuts that bleed what would seem to be an abnormally long time for a normal person. I have only been to the ER one time when I cut my hand while chopping vegetables and it was still freely bleeding after an hour of pressure.

No one can truly talk you out of your anxiety, but hopefully the experiences of others can ease your fears to a degree. Unfortunately, I did not find this forum until after my OHS, but reading their experiences has helped my post-surgical fears.

I didn’t have a clue I had a heart problem until the end of December. In March I had more testing and was referred to a surgeon in mid-April, which was quite the surprise! After having a scheduled heart cath in May the surgeon scheduled me for exactly one week later! What!?!? That week passed in a blur between readying myself at work and home. I wouldn’t generally bring up religion here, but during that week God and I talked a lot. I decided that I had to place my trust in the surgeon and the outcome was the Lord’s will. When I went into surgery I had complete peace, because I knew I was okay whether the surgery was successful or not.

6 years later, I’m 55 yrs old and living my best life and I thank God every day that I wake up. I truly believe that recovery has a lot to do with the patient’s attitude. My grandchildren think it’s cool that Mimi has a “bionic” heart, plus cadaver bone, plates, screws and rods in my neck and back. Life is what we make it and even with bumps, it can still be pretty fantastic! I wish you all the best!

 

[dornole]

I’d also double check that warfarin isn’t contraindicated for any of the other meds you need to take.