29yo.. re-op avr tomorrow

[Guest]

Hey there... Long time reader just lurking, finally posting... Going to make this brief.
I started reading this forum when I was anxiously awaiting my first AVR/MVR with st Jude valves, due to endocarditis. This was at age 27, in Feb 2014 in Louisiana, where I grew up and my parents still live. I was scared and reading this forum gave me immense peace of mind.
Over the summer of 2014, my new cardio in California drew my attention to my aortic transvalvular gradient, which at 40mercury is apparently very high. When I returned to Louisiana for the 2014 holidays , my cardio there insisted that it was normal and nothing to be concerned about.. I demanded another echo before I returned to California the following spring, early 2015. When I presented the echocardiogram results to my Cali cardio, he broke the news to me that the Louisiana doc had (seemingly intentionally?) failed to include the one measurement in question, the aortic transvalvular gradient. He insisted that I take a referral down to Stanford hospital, where I have been told that the pressure is 36-40mercury and way too high and that the 19mm valve is too small, and that the surgeon here has lots of experience in replacing valves - he said he will do an aortic root to widen it and put in a larger valve. He is the head of the cardio dept here so I am certain he is quite expert at this...
I'm quite terrified because, a re-operative sternotomy is supposed to be even more painful , and I'm .... Yeah. Terrified.
Anyway. Any thoughts or words would be so appreciated... Surgery is tomorrow!!!!
Love and well wishes to all,
Eric

 

[pellicle]

Hey Eric

to be honest when I had my 2nd and then third it was not more painful. It was hard to really compare as nearly 20 years had passed and the memories were unclear (although strangely clear about some points).

In a recent discussion (last week) my surgeon said that he could have put anything from 22mm to 25mm in ... he picked 25mm as he thought that "would suit me better". Since surgery its been good. I've been back doing XC sking and got my fitness up well.

Basically you'll be all right. Don't sweat it and just remember that in a short time it will be history

Best Wishes for Tomorrow .. hope to hear from you again soon

 

[almost_hectic]

You'll do fine Eric, sounds like you found the right guy to fix the situation. You've been through this once already, relax, stay strong and just go forward. When it's over and you've recovered, get a lawyer and sue big time!

 

[AZ Don]

Best wishes to you tomorrow.

 

[honeybunny]

Sending positive thoughts your way, Eric. Let us know how you are doing when you are able.

 

[Northernlights]

At least you're in good hands now. Unfortunately many surgeons don't like doing a valve enlargement, and so don't get the practise to gain the necessary skills , and therefore don't like doing it etc etc. It's a vicious circle, and is a real problem for those of us with a small valve annulus. But putting a 19mm valve in a 27 year old is just unacceptable. I'm sure they'll give you a decent sized one this time. Best wishes for a swift recovery.

 

[erock99]

Thanks for all the well wishes reminding me that I will get through this.. This guy Joseph Woo is the head of Cardiosurgery here at Stanford and sounds like he's top in his field.
Any ideas as to why this previous guy in Louisiana (who's supposed to be such a bigshot there) would have put in a 19mm? Any ideas why they denied it was wrong afterwards (surgeons will never admit mistakes?)?
Any other advice ? I know I've been through it once, and I'm in such better health physically and mentally.. No risk of coding pre-op this time!! I'm just pacing the hallways in fear here... I guess I've got to just put my faith in the universe that has taken care of me so far, and buck up and prepare for the pain!
And know that I'll be able to bike, run etc after this one without worrying about the extreme pressure!
Thanks all you are such a wonderful helpful hope , blessings unto all

 

[Northernlights]

You must have a small 19mm annulus. The trouble is this is ok with a ' normal ' natural valve, but prosthetic valves in this size are extremely obstructive and so have high gradients at rest which nearly double on exercise. They may be Ok for someone who is tiny and doesn't need much blood flow, but I imagine your height and weight mean you need considerably more. Since you had endocarditis, was this an urgent surgery with you in very poor shape? It might be that he felt it wasn't safe in the circumstances to enlarge the annulus, and better to save your life with a smaller valve and not add to the surgical risk. However , that doesn't explain why he obfuscated about the echo gradient : the latter is probably, as you suggest, not wanting to admit there's a problem. Anyway, hope this is all soon history and you get a much better valve.
Re the pain, if it hurts more, just ask for more pain relief!

 

[Bonbet]

erock99; I am sure you will have much better outcomes with your anticipated re-op at Stanford. I was evaluated there in 5/12 by Christopher Woo and William Fearor. I was favorably impressed, although I was no where near ready for surgery at that time. Be well. Bonbet

 

[ottagal]

Sending my most positive thoughts and best wishes for a successful surgery and smooth recovery.

 

[erock99]

Hey Eric

to be honest when I had my 2nd and then third it was not more painful. It was hard to really compare as nearly 20 years had passed and the memories were unclear (although strangely clear about some points). Since surgery its been good. I've been back doing XC sking and got my fitness up well.

This is reassuring... I look forward to putting this behind me and resuming an active lifestyle without fear of my heart exploding or something!.. Thanks for the reminder that many people endure multiple op's without too much issue.

 

[erock99]

You must have a small 19mm annulus. The trouble is this is ok with a ' normal ' natural valve, but prosthetic valves in this size are extremely obstructive and so have high gradients at rest which nearly double on exercise. They may be Ok for someone who is tiny and doesn't need much blood flow, but I imagine your height and weight mean you need considerably more. Since you had endocarditis, was this an urgent surgery with you in very poor shape? It might be that he felt it wasn't safe in the circumstances to enlarge the annulus, and better to save your life with a smaller valve and not add to the surgical risk. However , that doesn't explain why he obfuscated about the echo gradient : the latter is probably, as you suggest, not wanting to admit there's a problem. Anyway, hope this is all soon history and you get a much better valve.
Re the pain, if it hurts more, just ask for more pain relief!

Thanks a lot for the insight as to why this may have happened. 5'11" and 160 but at the time a mere 135 I'd say, as you said in awful shape, even went code blue twice pre-op. And yeah, in mom's words, surgeons typically bury their mistakes rather than admit them.
Thanks a lot.
By the way, I've been rescheduled for tomorrow, Friday. Here's to eating huge hospital meals til midnight!! (PS Stanford has some pretty good food, very very excited about it)

 

[Paleowoman]

By the way, I've been rescheduled for tomorrow, Friday. Here's to eating huge hospital meals til midnight!! (PS Stanford has some pretty good food, very very excited about it)

Wishing you all the best for tomorrow.

And bon appétit till you have to stop eating. The hospital where I had my AVR had hotel catering and I was really looking forward to all the things I could eat post surgery, and then I found I couldn't eat, simply lost all the desire to eat - so annoying when I'd been looking forward to the food and planning great meals !

 

[Superman]

Wishing you all the best for tomorrow.

And bon appétit till you have to stop eating. The hospital where I had my AVR had hotel catering and I was really looking forward to all the things I could eat post surgery, and then I found I couldn't eat, simply lost all the desire to eat - so annoying when I'd been looking forward to the food and planning great meals !

Seconded. Could barely eat after my last surgery. Food did not taste or look good. Had to go all bland, because anything with any flavor at all was over-powering. Good news was, I lost a lot of weight in short order in the months that followed. Took a solid two months before I could start branching out again.

 

[ForeverThankful]

Eric, Best wishes for tomorrow!

 

[erock99]

Hi everyone,
Thanks all again for the well wishes.... Sometimes being in the hospital can feel so lonely. They officially increased my 19mm aortic to a 23, did a root graft, and ended up putting an "annular ring"(is that right?) on tricuspid BC apparently I had moderate regurgitation and they're saying it was necessary so my heart won't have to work so hard.
I'm in the ICU, in extremely horrible pain... I guess theyre trying to mitigate it but damned if it don't hurt.... A lot of newbie nurses which is even worse. Five chest tubes (had 3 last time) and I guess they'll start yanking em tomorrow.
Has anyone else experienced this -- last surgery, I had a nightmarish experience immediately post-op , still in a slight haze, when a PA was stalking about and talking about how "part of (him) enjoys inducing pain (in patients)" , which terrified me so much I had to beg for him to stay away (much later, on the floor, he arrived to pull a chest tube out; I had been bawling for pain relief, which I guess he overheard, but when I insisted I wanted a physician to yank it and not him, he proceeded into the hallway loudly declaring 'some 27yo crack head begging for meds doesn't need to tell me how to do my job'..) And now this time, at another hospital across the country, I was in the same immediate post-op situation, and some young lady was flitting about the area, "playfully" spraying the guy attending to me with water but soaking me in the process... When I protested (in my weak haze of course) she told me she can spray whoever she wants ... I got a bit more vocal about how inappropriate I felt it was especially her response and some admin guy came by shortly and assured me she'd be kept away from me.
Is it just a weird coincidence or is this really that common, maybe BC they are sure ppl are in post-op hazes so they'll behave in any manner that they choose?
I'm very grateful to be alive and am trying to be patient with the pain... The old man across from me had a whole heart transplant! Amazing! I guess the first successful one was performed here at Stanford in '68....
So thankful for modern medical expertise and most of all for life!!! They say my ventricular function is rather impaired or something but is better post-op than it was, they said it should improve but they didn't sound extremely enthusiastic that it would, but maybe that's just my PTSD/paranoia...?
Anyway I am so grateful for you all and for this forum, bless up all of you!!!!
Eric
29years old. AVR, MVR Feb 2014 St Jude mech valves in Louisiana.. Diagnosed stenotic and very high 40mercury transvalvular gradient, just underwent AVR widened annulus plus root graft plus tricuspid annular ring Stanford hospital Dr Woo

 

[Zoltania]

Hi Eric,

You're still in the ICU and you're posting here? That is impressive.

Sorry to hear you are in such pain; hopefully they can adjust your medications and make you feel better soon. Your young age probably doesn't help. My surgeon kept telling me that younger patients feel more pain because their nerve endings are more active.

At least you had someone from administration noticing your complaint. It's great that you were able to speak up for yourself.

I believe the ring is called an annuloplasty ring. Edwards sent me an ID card with the make, model, and serial number of mine.

Good luck with your continued recovery!

 

[pellicle]

Hey

glad to hear you on this side of surgery

Yes, the pain is frustrating and tiring, but its good to tell yourself that its just an indicator.

I had (now that you remind me) some extra tubes last time (compared to the first two) and had the wire in for "defibrillation" (which was pulled back in the ward).

While the pain meds are perhaps good, try to go easy on them as the come down nightmares were truly disturbing for me. I feel that they influenced my dreams for years after each time.

Get up and walk as they ask you to (I was walking in ICU soon) and be careful when you do your first piss after the catheter comes out. Mine split into two beams neither of which hit the right place ... so if you can try sitting down (which I did on my 2nd).

Sounds like your nursing team are ******s.

There was an indian guy next to me who was a really big guy (and I don't mean fat). His wife and daughter had to help calm him down as everyone was worried he'd hurt himself.

The stories are amusing
Best Wishes ...

 

[MrsBray]

You know the pain will subside when the tubes come out. it'll be soon. In the meantime, try to relieve any weight on your shoulders by making sure your head is supported, and the weight of your arms is supported - jam a couple of pillows under your armpits. I'm sorry you don't have your own room & nurse. I guess it's just chance you got d-bags for wake-up nurses. Keep breathing & walking and breathing & sleeping. It'll be a foggy memory soon.

 

[carolinemc]

Erock99, hang in there. do what the mean night nurses tell you and you will better soon. You know what to do. Prayers for healing to you. Hugs for today.