Tissue Regrets??

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Keithl

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Apr 20, 2019
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So I write this as I sit in Cleveland Clinic ICU wiring for my steep down room with surgery only about 24 hours again. My Surgeon DR. Unai was fantastic. If my root looked good he would use and On-X if the root was bad he would use St Jude with built in root an aorta graft. Seems my root was perfect so I received a 25 mm On-X valve which was his preference as well.

I am one of the few folks that does faintly hear my valve, but is not horrible and easily ignore.

This forum led me to ask questions. As to what would be coming out of me when I wake up. I had 2 IVs one from each wrist, 1 arterial line on upper left arm to monitor my BP and allow them to pull blood as needed. There w as a central line in my neck and then 2 drains out of my chest and abdomen and finally my urinary catheter.

I was told by many folks the breathing tube would be out quickly, but evidently I come slow out of anesthesia so I recall the tub vividly and waving to they it out. Seems it was in closer to 45minutes. I am 1 day into ICU and and have passed breathing tests and Physical therapy work and am waiting on a step done room to free up. I have bad reactions to anesthesia so first night was heavy nausea and trundling up 3 times which did not feel good on my freshly mended sternum.

Overall today is far better, and the worst is behind me,

As for Cleveland Clinic, all I can say is amazing, every pro-op test was far more thorough than can tests I have had before. The people are amazing and while insurance covered the medial piece, it’s worth every penny out of my pocket to get here. There is a reason this place is #1 heart place in the country.

Overall wheels in to wheels out of OR was about 5 hours.
 
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Hairballusmaximus

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Feb 16, 2018
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At least you are being given some options.
I was 42 when my Aortic valve attempted its escape. Im 48 now. No warnings, it hit me like a ton of bricks and I went down.
I remember most of the goings on but by the time the ER figured out what had happened I was floating in and out.
I got what my Surgeon considered to be the valve with longest longevity based on my age.....a St Judes mech valve. It's very noisy to me. The first 3 or 4 months after I started driving again, I was turning my signal lights on and off constantly because the tick indicator sounded exactly like my valve....drove me nuts.
Now it's like a background noise, but I still hear it, kinda like an old school clock, just ticking away.
I was not given the option, they just did what they thought was best, and told me I was extremely lucky to even be alive.....it took over 7 hours from when the valve tore out until I hit the OR table. Only thing that saved me was the pericardial sack didnt rupture.
I dont really mind the Warfarin/Coumadin that much, I've had no issues keeping it in range.....but considering that l like out doors stuff like hiking, riding bicycles with the family and the 3-4 trips a year to the sand dunes to ride quads does cause a little concern for bleeding issues in the event of an accident.
I dont have any advice other than to do what you are already doing....reach out to people for their stories and experiences.
I wish you the best in making your decision.
 

Agian

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'Hairballus Maximus' lol sounds like one of the Romans from the Asterix comics :)
Ave from Marcellus the peacock (that's another story).
 
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pellicle

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You may note that the anticoagtion forum usually stays busy with members seeking advice, and they almost all have mechanical valves implanted.
Probably because so few tissue valvers are on ongoing AC therapy. But if you end up needing it, we'll be there to help.

Most of us with experience have zero problems and are there to answer questions for the newbies (which is what this place is for right? :)
 

arkiebelle

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I chose a bovine mitral valve in 2007 at the age of 36. I was single with no kids. I chose tissue so it would be safer to have a baby.
Fast forward 12 years. I am married and that "baby" is 7. The time came to pay the piper. I developed tachycardia, a-fib/a-flutter and mitral stenosis. I had my second OHS on Halloween 2018.
This recovery has been much, much harder than the last one. Twenty days in the hospital instead of 5. A-fib is a constant struggle. I am also still not back to work. To be honest, it's been a painful, exhausting, and somewhat discouraging process at times. It's also had its good days with awesome outpatient cardiac rehab and a lot of support from family and friends.
The risks, pain, and struggles are worthwhile when I look at my precious son. Absolutely no regrets here.
My advice is to ask your cardiologist to level with you about the risks and difficulty of a second valve surgery before you choose a tissue valve, especially if you are young. And don't assume you will be a candidate for minimally invasive surgery. I always thought I would be but when the time came, my only option was a second OHS.
 

epstns

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@Keithl - How do you do it? So soon out of surgery and you seem fully lucid and able to think/write clearly!

My first few days after surgery were a fog of complications. My first few posts after surgery were a comedy of errors and fogged thoughts. I'm glad to see you're doing so well.
 

Keithl

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Apr 20, 2019
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I was lucky, once anesthesia wore off I was fairly alert. I have been my valve and aneurysm for the last 10+ year so when they said in January the aneurysm was 5.1 I knew it was time. I had been doing regular cardio workouts 4 days a week and eating fairly good and doubled down last few weeks before surgery to make sure my body was as goo as it could be to recover quickly.

Surgery was Thursday and I started doing some work emails Saturday. Today (Monday) I was on con calls from 9am until noon. I also was walking laps around the steep down until Saturday and by Sunday needed very little assistance getting in and out of bed.

I will give the team at Cleveland clinic props as they did and amazing job and the surgeon and care takers all kept telling me I was ahead of schedule. The only thing holding back my discharge is my INR is still 1.0 after 3 nights of Coumadin, but they are discussing letting me go with some injections I would need to take until my INR lines up.
 

pellicle

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but they are discussing letting me go with some injections I would need to take until my INR lines up.
that's good news. For what its worth when I went off warfarin for a small procedure it took me longer to establish my INR than I anticipated AND I had the added benefit of knowing what my dose was (so I didn't overshoot and over dose). The graph below is from my experience of managing that (and this blog post about that)



So as you can see by Wed my INR was "un-anti-coagulated" and even with a loading dose of 12mg 6 days to reach my target (and then stabilize). You'll observe the small adjustments in dose I was making and yes I was taking INR daily on my machine.
 

Keithl

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Apr 20, 2019
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Well they bumped up my Coumadin from 5mg to 7.5mg we hope to see some movement in morning as tonight was 4th dose. What concerned me more was they they raised my heparin drip from 5ml/hr to 10ml/hr when everything I read wa they should have started with 10ml. Nothing like running a stroke risk because th feels that prescribed also never ordered a PTT test to see how effective it was. They say I will be on a baby aspirin for life, which I am fine with as I have been taking one for over 25 years.
 

pellicle

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...What concerned me more was they they raised my heparin drip from 5ml/hr to 10ml/hr when everything I read wa they should have started with 10ml. Nothing like running a stroke risk because th feels that prescribed also never ordered a
I'm not sure that its that sensitive, but heparin is pretty effective (and acts fast). How did you determine what "it should have been"?

In ICU the guy beside me was given a drip of glucose because someone decided his glucose was low ... then someone else identified he was diabetic (written on his chart) pretty soon and saved him.

People with no specific reasons, who want to kick the can down the road by planning for a second surgery have rocks in their head if you ask me
 
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pellicle

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also, as far as I know, there is a delicate balance between AC (Anti Coagulation) therapy (*heparin or warfarin) and the essential wound healing around surgery. Too much AC and you can have dehisence (https://en.wikipedia.org/wiki/Wound_dehiscence ) which you may not want on a pressureised vascular system. It may also set you up for paravalvular leaks ...

just tossing in other factors for your consideration.
 

Keithl

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Apr 20, 2019
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Very frustrating how slow Coumadin is taking effect. After 3 does of 5mg and 1 at 7.5mg I moved from INR 1.0 to 1.1.i am so itching to get out of here. They are even still tweaking the heparin moving from 5ml to 10ml and now 14ml. Evidently my body likes to clot blood.

I had to get them to give me oxy last night more for my back pain due to uncomfortable bed vs. any real surgery pain.
 

epstns

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I know how frustrating titrating a warfarin dose can be. After my valve surgery I was prescribed warfarin for 90 days (tissue valve, standard protocol at the time). It wasn't until the middle of the third month that my INR was actually stable in-range.
 

Duffey

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How many days have you been hospitalized now? I was in for four, but that’s almost 15 years ago, and I assumed the time would now be shortened.
 

Keithl

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How many days have you been hospitalized now? I was in for four, but that’s almost 15 years ago, and I assumed the time would now be shortened.
I have been in 6 days, but could had been out in 4 if my INR were good. I finally hit 1.4 this morning so am headed in good direction. Also heparin level finally is where it needs to be. First. Time I am out of stroke territory since surgery.
 

pellicle

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Very frustrating how slow Coumadin is taking effect. After 3 does of 5mg and 1 at 7.5mg I moved from INR 1.0 to 1.1.i am so itching to get out of here.
I'm willing to bet that it's because your final stable dose will be over 10.
I help manage one guy who is on 15 regularly.

I got him in range in two weeks, where his doctors hadn't in months.

The problem is that they fail to follow the data and the rule that with warfarin the intention to treat is the INR. They get wrapped up in the ignorance that "this seems high".

Until you are not in there hands the best I can do is tell you to remind them of that.
 
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