Howdy everyone! Just found this site.

[Revelation Rising]

Hi guys. I'm a 40 year old male part cyborg with an on-x artificial valve and aorta graft. I had an aortic dissection a little over 6 months ago and only survived because I told the doctors to do a d-dimer test. They checked me for heart attack and said everything looked fine and it was probably just indigestion. 30 minutes later they were stuffing me into an airplane to go to Baylor Heart Hospital. I'm mostly recovered now, but because of the aorta graft I can't live the lifestyle I was used to. Just walking uphill wears me out. Is it normal to still be in pain this far out from surgery?

 

[3mm]

on-x artificial valve and aorta graft

Welcome to the forum! I expect you purchased an On-X aortic valve? I had my mitral valve repaired and an On-X mechanical aortic valve installed Sep 14, 2023. Almost 9 months ago. I had a full sternotomy; how did they install your mechanical valve?

Just walking uphill wears me out. Is it normal to still be in pain this far out from surgery?

I say "No", based on my experience and what I hear from other valve recipients. What does your cardiologist say? Please talk with them about this. For example, after 6 months I could walk steps and ride an exercise bike at a good pace for 30 minutes.

Did you attend any cardiac rehab classes? Will your insurance cover these classes? A good cardiac rehab class will be run by a medical person who understands the cardiac system and how to train it after surgery. In my classes they even kept us on EKG monitors while we exercised so they could watch how our hearts responded to the stress. I strongly urge you to get some expert help during this phase of recovery.

Pain is a very individual thing, and there are a lot of different types of pain. In the general sense, you should not be in pain anymore; hence, please talk with your cardiologist about this. It might be a sign of a problem that needed attention. Where in your body is your pain? Do you feel pain all the time, or is it associated with certain activities?

Improvement is gradual, but with work it will come along!

 

[Chuck C]

Welcome to the forum and glad you found us.

Just walking uphill wears me out. Is it normal to still be in pain this far out from surgery?

That would not appear to be normal. I had basically the same operation as you did- a mechanical valve with a dacron graft replacing part of my aorta. I was feeling very good by about 3 months out and close to 100% by 6 months.

What medication do they currently have you on? Sometimes being on high levels of beta blockers, or other blood pressure control meds, can make it hard to exercise.

 

[Survived03]

You, my friend, are indeed lucky. Congratulations and welcome to the site.
I don't believe I can add any more than the others regarding the difficulty walking. What physical shape were you in prior to the dissection? And remember that the mind is also healing and getting used to new hardware and the trauma of emergency surgery. After my first surgery I was pretty apprehensive to push the envelope at first. It gets better.

 

[Revelation Rising]

Thanks for the info... I'm on carvedilol and warfarin. Just saw the cardiologist last week for my 6 month checkup, he said it's normal and I can't expect to get back all function, but the surgeon said he expected me to make a full recovery... do I need a new cardiologist? He said because of the graft and the beta blocker I can't pump blood like I used to. I'm still pretty active, I work outside with a shovel and I play hacky sack, I can walk on level ground forever, but going uphill kills me. Also any type of task hunched over is difficult, even getting something from a lower cabinet... Doc told me that might get better if I lose weight, I'm 5'10" medium frame 220 lbs, so that's more than I weighed before the surgery. I used to eat only a light lunch and a decent dinner, almost always healthy stuff, no seed oils, veggies from the garden, low fat meats, but now I have to eat breakfast to take the carvedilol... that basically means carbs. Plus it's harder for me to do any exercise now... my dissected aorta still has 2 pathways, one to a leg and one to either my liver or kidney, I forget. And for the surgery they chopped me all the way open.

Anyways, thanks again for the info. Check out Kings of Terlingua channel on rumble if you want to see my pet bird, we also have comedy videos on a YouTube channel and steak seasoning for sale on our website. One of the YouTube videos was actually filmed in the hospital after my surgery. Apparently it isn't very funny.

 

[Revelation Rising]

Oh, and no I have no way to do cardiac rehab. I live 600 miles from anywhere that offers that.

 

[Chuck C]

He said because of the graft and the beta blocker I can't pump blood like I used to

The beta blocker will reduce your cardio output. However, I have not found that the graft makes any difference for me. I have returned to a very high level of cardio output, comparable to my levels before surgery. If my output is less due to my graft, it is not noticeable. Every Saturday I spar about 14 rounds of boxing, which would not be possible if my cardio output was severely diminished.

Have you tried working with your cardiologist to adjust your beta blocker down a little, to see if that improves your ability to exercise? Would it be possible to get your blood pressure under control with diet and exercise, such that you can go off of the beta blocker?

After my surgery I was also on a beta blocker. Over the course of a few months my dosage was decreased and by about 12 weeks out I was totally off of it. With each decrease in dosage, I found my ability to exercise improved. When you increase your level of exertion, such as going from flat walking to walking uphill, you need much more blood flow to supply the oxygen your body needs for the increased demand. Because it keeps your pulse and blood pressure low, a beta blocker can reduce your heart's ability to meet the increased pumping needed for the exertion. If you have high blood pressure, the most important thing is to keep that under control, with medication if needed. But the reduction in cardio output can be a trade off.

 

[pellicle]

Good Morning

lots of good comments above. So I'll cut to the chase:

... with an on-x artificial valve and aorta graft.

I have an ATS mechanical valve with an aortic graft and I'm on Warfarin and that was done 12 years ago now. I was on beta blockers for the first months (didn't count, can't be sure, but think it was like 3 or 6)

the purpose of the beta blockers is similar to the purpose of a cast for a broken leg: it prevents you from breaking it while its setting.

Same goes for both the electro-chemistry (the nerves within the heart that signal and control beating) as well as the stitches holding your tissue to the graft until it takes. You don't want the stitches to "rip off" as then valve to rip off and you would be dead.

By 3 months the tissue has regrown (endothelia and the process is not unlike a plant like (say) ivy growing all over a brick wall .. they grow inextricably together. The other thing is that the stitching remains waterproof (well blood) and prevents leaks until the endothelia have got it covered.

but because of the aorta graft I can't live the lifestyle I was used to.

I have totally no idea why you can't live the lifestyle you were used to; but then I don't know your lifestyle. Perhaps you were an Olympic level athlete or a top ranked UFC fighter who trains like a machine and is still in command of that heavy weight title which you've kept solidly longer than anyone (but I'd have heard of that).

So basically if you're a normal human you can live the lifestyle you used to. I sure did. I had my OHS for graft and clacker in 2011 ... between then and now I've

• trained myself back up to where I was (about the first year after OHS)
• battles an infections (and trained back up)
• got back to where I was and exceeded it in cross country skiing (went back to life in Finland from Australia where I had my surgery and where I come from)
• cycled prodigiously
• weight trained carefully and reflectively (I'm not into bulking)

So to return there is nothing about what has surgically been don to you which prevents you living your life. An old post here, you can find more if you want.

Just walking uphill wears me out.

as suggested, that could well be the beta blockers. As I've mentioned here on VR before, I use (now) betablockers again because I developed an arrythmia after about 10 years (dunno why, I could make some guesses). I picked Metoprolol Tartrate (importantly, not Succinate) because it allows me windows of "low effect" to do training.

That becomes necessary if you are going to be on them permanently.

Is it normal to still be in pain this far out from surgery?

no, its not, so that's something you need to report and discuss with your team.

To me the 1 year point is an important indicator of surgical outcomes, on the way there you'll perhaps identify issues, which need correcting. So now you've detected an issue you need to see to it that its corrected.

Best Wishes

 

[Revelation Rising]

Perhaps you were an Olympic level athlete or a top ranked UFC fighter who trains like a machine

Lol I do a lot of manual labor in 120⁰ heat. Shoveling mud in the sun for the water department. We have hundreds of miles of pipe and only 3 guys to keep it all running. Nothing glamorous.

 

[pellicle]

Lol I do a lot of manual labor in 120⁰ heat

Well, sorry to say that may need to ease back anyway as you age.
Something you will now be permitted to do. Unlike those I have lost from my life from cancer or accident.

 

[pellicle]

Hey @Revelation Rising

I realise this may go against your philosophy but I think its important to discuss a few things.

Firstly while surgery saves our lives (you would almost certainly be dead now were it not for surgery), the surgeons do little for our spirit. There is something about OHS and the way we work ourselves up about things (which are in reality so alien to us in any historical context) that we have nothing in literature, nothing in art and nothing in spiritualism to really help us to come to terms with such sudden and life altering changes as being saved from death.

If you consult my Site Bio you'll see that I've had since I was a child to come to grips with (3) OHS('s), and if I can be frank it took some steering and dedicated reading on my part to not grow up non-functional. However I did and I did that by being unlike anyone else in my family (as a predictor of what I may have been) and became something else.

We all began as something else, so its what we make of the chance thrown at us now to adapt to a new life. Perhaps no less a new life with changes than anyone who went through a war and came out alive on the other side (while others around them died).

You didn't die ... but having seen workmen (doing roles like what you described your role as) do very badly as they aged (many having heart attacks at 50 or worse) you now have the opportunity to forge something new for yourself. Perhaps its but a small adaptation, perhaps its a clean break ... who knows.

I don't know (but I'm guessing) if the following faild to call out to you about "adapting"

perhaps instead its Matthew 25:14–30 where, in Christian teaching, you know now that you are expected to go and do something with what you have been entrusted with, an extension on your lease.

As my signature says: “We have two lives and the second begins when you realize you only have one.”

You won't get that support from Doctors nor Surgeons, but you will get it here.

Best Wishes

 

[Buck83]

I couldn’t agree more with @pellicle. You were definitely blessed to come out on the other side of a dissection. But I know you know that. Also, I would attribute your diminished performance to the beta blockers. I had the same surgery you had at the exact same age. I am in the military and have been an athlete and workout enthusiast my entire life. I know the beta blocker is necessary post surgery but I hated how I felt on them. I pleaded with my cardiologist to come off of them asap. 9 months post op I was doing intense cardio and some strength training and trekking through the mountains hanging tree stands to get ready for bow season. However, 5 months after that I had a mild stroke and that was a big setback. Took me about 2 months to get back to where I was. But I was swimming, biking, running, and strength training. Then last fall I had a bout of cardiac anxiety that nearly crippled me. Thankfully I got through it. The first of the year I started back into training and was doing great until April. Now I have hurt my left shoulder and am unable to do much of anything. I say all of that to say this, this is a fun ride that none of us asked for. It seems like it’s peaks and valleys for most of us. Stay positive and in communication with your doctors. Work towards the major victories but cherish the small ones too! Be patient and play the long game!

 

[pellicle]

Work towards the major victories but cherish the small ones too! Be patient and play the long game!

Exactly, great summary. I wish I could've said it as well as you have.

 

[Protimenow]

Welcome to the forum.

Now - completely off topic -- I'm not completely following my cardio's plan. He wants me to take carvedilol at 3 pm and around bedtime (this is about an hour after verapamil). My BP is good - I don;t know what an extra carvedilol will do for/to me. At one point, my cardio said he will try to wean me off of verapamil - I have to remind him. (Maybe this is why I run out of energy so quickly)?

 

[Revelation Rising]

Welcome to the forum.

Now - completely off topic -- I'm not completely following my cardio's plan. He wants me to take carvedilol at 3 pm and around bedtime (this is about an hour after verapamil). My BP is good - I don;t know what an extra carvedilol will do for/to me. At one point, my cardio said he will try to wean me off of verapamil - I have to remind him. (Maybe this is why I run out of energy so quickly)?

Sounds like you guys have more dedicated doctors than I do. I'm not supposed to see my cardiologist for another 6 months, and nobody told me what time to take my medications or anything. I also forgot to mention that I get atrial flutter and they've had to jump start me twice. Once chemically, once electrocardioversion.

 

[Lisa from LJ]

Welcome fellow Texan! I assume you're in far west Texas, but surely there is a facility that can do cardiac rehab closer than 600 miles. Which Baylor facility did you go to? I used to work at Baylor St. Luke's in Houston.

My brother had a mechanical aortic valve and root about 30 years ago. He is now 60 and runs marathons and occasionally does Spartan races, so yes, you can get back to where you were. After my mitral valve replacement, my doctors told me that I wouldn't be completely healed from the surgery for at least a year. However, I didn't have pain after I was discharged from the hospital and didn't fill my pain med prescription until I had pericarditis which was much more painful than the surgery. Because of pericarditis, I also couldn't do cardiac rehab.

I took Atenolol for several months after my surgery and finally told the doctor I wanted something else because it made me feel so terrible. He put me on another blood pressure med and I monitored my pulse rate for a while.

You mention not being able to get something off a low shelf. Is there pressure in your chest when you do this? Do you feel like an elephant is standing on your chest when you like on your back and pressure when you lie on your stomach? If so, you might have pericarditis. I think it's more common with mitral valve surgery, but it can also happen with aortic valve surgery. Mine started about 2 months post-op. I still get it about once or twice a year, but I recognize the symptoms and take medicine as soon as I know it's coming on.

 

[carolinemc]

Hi guys. I'm a 40 year old male part cyborg with an on-x artificial valve and aorta graft. I had an aortic dissection a little over 6 months ago and only survived because I told the doctors to do a d-dimer test. They checked me for heart attack and said everything looked fine and it was probably just indigestion. 30 minutes later they were stuffing me into an airplane to go to Baylor Heart Hospital. I'm mostly recovered now, but because of the aorta graft I can't live the lifestyle I was used to. Just walking uphill wears me out. Is it normal to still be in pain this far out from surgery?

There are times they do this, for ER doctors are not educated on cardiac issues. And they often think indigestion or gas for when we are having a heart attack. You were lucky to have stayed there and they discovered their mistake quickly enough.
For the incision pain, normal for it takes the muscles a year to complete heal from the trauma of being cut open and surgery itself. But give it more time and good you are getting your exercise on. Walking is best exercise and slow pace if possible. Hang in there, the pain will pass over time. And welcome to the zip club.

 

[Protimenow]

Atrial flutter is NO FUN. Like you, I had cardioversion twice -- once chemically, the other through electrical defibrillation. After two, my cardiologist decided that an ablation of the node that triggered it was needed. I have a pacemaker, so I'm not sure if this is an option for you.

 

[Timmay]

Not everyone gets back to things 100%. I am an example of that. And it is not for lack of trying. It's been two years for me. On-X valve. Aotic root expansion to fit the Onyx 23mm. Prior to surgery with my severe stenosis I was still working out hard. 300 reps in the gym in like 20 minutes (10 different exercises as a superset .... repeat that superset for a total of 3 sets). I was running 2 miles a couple times a week. Fun times. I could slowly bench my own bodyweight with perfect form for 10 reps (feet off the ground, no back arch, etc). I was super active and no amount of strenuous activity caused me issues.

After surgery I can't even come close to these numbers. Yes, I did cardiac rehab. lol. Passed with flying colors.

Don't get me wrong. I'm blessed. I'm alive. I can walk for miles with my wife and dogs. I can do small workouts (but not heavy weight).

If I do too much strenuous activity (and I don't just mean heavy weight), my body crosses a boundary and my heart goes into "super thumpy mode" where each heart beat is super strong and I start getting PVCs. Then I'll feel exhausted. Depending on the severity I might be exhausted for a week.

I've had a CT scan study, nuclear stress test, echos, etc. They can't find anything wrong.

So yea - not everyone gets back to 100%.

 

[Lucker]

Not everyone gets back to things 100%. I am an example of that. And it is not for lack of trying. It's been two years for me. On-X valve. Aotic root expansion to fit the Onyx 23mm. Prior to surgery with my severe stenosis I was still working out hard. 300 reps in the gym in like 20 minutes (10 different exercises as a superset .... repeat that superset for a total of 3 sets). I was running 2 miles a couple times a week. Fun times. I could slowly bench my own bodyweight with perfect form for 10 reps (feet off the ground, no back arch, etc). I was super active and no amount of strenuous activity caused me issues.

After surgery I can't even come close to these numbers. Yes, I did cardiac rehab. lol. Passed with flying colors.

Don't get me wrong. I'm blessed. I'm alive. I can walk for miles with my wife and dogs. I can do small workouts (but not heavy weight).

If I do too much strenuous activity (and I don't just mean heavy weight), my body crosses a boundary and my heart goes into "super thumpy mode" where each heart beat is super strong and I start getting PVCs. Then I'll feel exhausted. Depending on the severity I might be exhausted for a week.

I've had a CT scan study, nuclear stress test, echos, etc. They can't find anything wrong.

So yea - not everyone gets back to 100%.

Thanks, I wish more people were this straight.