Imminent AVR - 40 y.o. female - advice please

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Unicusp

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Oh yeah, forgot to say - and I wanted to ask you guys about this. They held the warfarin for a day because I was getting the pacing wires pulled out the next day; and since I’d gone up to 2.4 so quickly, they thought I’d be too high (and might have a bleeding complication I guess). I thought at the time, “is that really necessary, since the effect from holding warfarin might not be seen for days...?” but deferred to their judgment... on that one...
Welcome back. Good to hear from you and all is going well, or as well as can be expected!
They did the same to me, INR was stabilized, then gets lowered to remove the wires, then bags of Heparin to raise it again.
Did you get a mini or full sternotomy? Only 2 drain tubes?
Well at least the hard part is over. Recovery goes fast. You'll feel better every day.
 

Chuck C

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Oh yeah, forgot to say - and I wanted to ask you guys about this. They held the warfarin for a day because I was getting the pacing wires pulled out the next day; and since I’d gone up to 2.4 so quickly, they thought I’d be too high (and might have a bleeding complication I guess). I thought at the time, “is that really necessary, since the effect from holding warfarin might not be seen for days...?” but deferred to their judgment... on that one...
Not sure I agree with their judgement there. I was at INR 2.9 when they pulled my wires and no issues with bleeding. It seems that hold dropped your INR down to 1.5 for a couple of days.
 

Amy

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Did you get a mini or full sternotomy? Only 2 drain tubes?
Mini sternotomy. 2 drain tubes, one stuck way up in my right shoulder practically.

Recovery does go fast, I can’t believe it - I felt like myself again waking up today. I can almost walk at a normal, albeit slow, pace, instead of pausing at every step or two to catch my breath and balance.

Watching a movie, ordering room service, listening to music, checking out the gift shop, all these little things were surprisingly big in getting me out of my head and expecting to be back in the world eventually.

The not being able to really use my phone for anything was surprising - I just couldn’t focus my eyes on a screen for more than a few seconds.
 

Amy

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Not sure I agree with their judgement there. I was at INR 2.9 when they pulled my wires and no issues with bleeding. It seems that hold dropped your INR down to 1.5 for a couple of days.
I have no idea what exact data they base the determination to hold warfarin on in this kind of case; but they do enough of these that they should know what they’re doing, right? This is exactly the kind of question my nurses & doctors HATE, lol. (“Why hold, not decrease, warfarin, for a day?”)
 

esvaja

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Hello Unicusp,

Thank you for your kind message. How's your recovery? I hope you're feeling better and better everyday. Is having an electric recliner everything you thought it would be? ;) Do you use it for sleeping, or just for getting up from sitting, or....?

Can I ask - you said 'this is his specialty' - do you mean congenital AVR surgery? Do you know how important it is to have a congenital surgeon? I don't want to have someone who only works on tiny babies, do I?!.... Or are most people's valves here on the forum congenital, such that I don't need to emphasize or consider that?

p.s. I hate texting on a phone too. Since being told it's time for surgery a few days ago, my husband's lent me his Mac to do research every day, and it's GREAT. :) I could type a whole novel.

Take care of yourself.

p.s. Do you have a blog or anything detailing your experience at CC? Just curious about your experience.
I get the congenital part, my son was born with Tetralogy of Fallot. When he will need more surgery he will have with a surgeon experienced with homographs - it was not mentioned a "congenital" surgeon. Me I was born with a bicuspid valve, had my surgery at CC in 2011. Further surgeries for my son would be done the same place he had his original surgeries - UoM.
 

esvaja

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Hey - a quick question to all you experts out there -

The Cleveland Clinic has emailed me that Dr Svensson doesn't do any phone consults/virtual visits. A 'practice manager' will inform me as to whether Dr Svensson thinks it's time for surgery or not, and then I just go to Cleveland I guess, have more tests and then have the AVR done. So...... I feel like I'll have a ton of questions that it would be best to talk to the surgeon about - is that not right? What is your experience, guys? I hate all this going through so many middle...people. What do you think? Tell me again - how many surgical consults you guys had before your valve replacement?
I'm having my 2nd AVR 4/20/21 at CC. And yes they are doing their darndest to keep face to face visits to a minimum. In my case I will have the same surgeon (he should remember just what he did in 2011) Dr Pettersson. I met with him in 2011 & he is barely personable, but that's OK!!! I want a competent, excellent surgeon, not someone I can sit down with & have a beer with.
 

Chuck C

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I have no idea what exact data they base the determination to hold warfarin on in this kind of case; but they do enough of these that they should know what they’re doing, right? This is exactly the kind of question my nurses & doctors HATE, lol. (“Why hold, not decrease, warfarin, for a day?”)
When they pulled my temporary wires it went very fast. This Asian woman comes in the ICU who was a part of the operating team- I believe her title was surgical assistant. She is a no-nonsense, right to the point person. She takes immediate charge of the ICU room-had specific sterilized garments that my nurse was to put over what he already had on. She sterilized the area and had the wires out before I could blink. She reminded me of the Cleaner from Pulp Fiction:

 
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esvaja

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I get the congenital part, my son was born with Tetralogy of Fallot. When he will need more surgery he will have with a surgeon experienced with homographs - it was not mentioned a "congenital" surgeon. Me I was born with a bicuspid valve, had my surgery at CC in 2011. Further surgeries for my son would be done the same place he had his original surgeries - UoM.
late reply. did you get a regular surgeon or one that specialized in AVRs? Kinda interested because my son is due for a replacement (homograph)
 

Amy

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did you get a regular surgeon or one that specialized in AVRs?
I think if you call CC and explain the situation they’ll probably tell you who specializes in AVRs; I read all the surgeons’ biographies and looked at their published papers to see what their specialties were, but just asking might work too.
 

Chuck C

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I want a competent, excellent surgeon, not someone I can sit down with & have a beer with.
I think it's even better when you they are competent and you can sit down and have a beer with them, because you like them. :) But, at the end of the day, I'll take competence over all else.
 

Amy

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it's even better when you they are competent and you can sit down and have a beer with them, because you like them. :)
Did you find anyone like that at UCLA, Chuck? I hope so. For me, the search continues, haha.
 

Chuck C

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Did you find anyone like that at UCLA, Chuck? I hope so. For me, the search continues, haha.
Although we did not have the opportunity, I got along with my surgeon very well and would love to have a beer with him if I ever get the chance. :) I did a consult with the head valve surgeon at Cedar Sinai in 2019 and did not get the same feeling, although I felt he came across as extremely competent.
 

Luckyguy17

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Great update Amy, happy you seem to be over the worse of the speed bumps and well on your way to recovery.
Day 5 was a major turning point for my 1St OHS, also the day i was released from hospital and smooth sailing thereafter.
Wishing you a smooth recovery, feeling better one day at a time.
 

pellicle

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I want a competent, excellent surgeon, not someone I can sit down with & have a beer with.
Agreed and indeed good surgeons are not like that at all ... frankly I don't know how they stuff it all in to 24 hours. Simply amazing. They must (like other professions) marry a very understanding and independent woman (or man).
 

Amy

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Finally got out of the hospital yesterday, on post-op day 6, after my INR reached 2.2 from 1.5, with the help of a heparin drip for almost 24 hours. There was some confusion with the surgeon’s nurse who for some reason thought my range should be 2.0-3.0, with a mechanical valve (not on-x) - if not for that I might still be there now, instead of relaxing at home with a cup of tea, in my own clothes, in the quiet; no more being stuck and poked and tortured by the phlebotomy sadists & nurses on power trips that walk the halls. I need to remember that good things can also come from other people not knowing what they’re talking about, ha ha.

A question: they wanted me to reduce my warfarin dose last night from 5 to 2.5, before returning to 5 tonight... Even if my range really was 2.0-3.0, having had a last INR of 2.2, would thatve been the right thing to do?... Were they expecting / Are there late effects from the heparin?

I took 5 mg. With a twinge of conscience from disobeying my very first order for my first experience dosing Warfarin...

Any thoughts?
Thank you, guys.
 

pellicle

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Hi

A question: they wanted me to reduce my warfarin dose last night from 5 to 2.5, before returning to 5 tonight... Even if my range really was 2.0-3.0, having had a last INR of 2.2, would thatve been the right thing to do?... Were they expecting / Are there late effects from the heparin?
to my knowledge heparin has no influence on INR readings because they work on different pathways. The Coaguchek XS system is speficially agnostic to it.

So to answer your question I'd really need more data to be sure but to be honest I don't follow what their intentions are. The "intention to treat" with warfarin administraion is only INR targets.

I don't see what they are getting at there and I only see:
  1. you are presently in range
  2. you are not heading badly out of range
  3. if they suspect you are then they'd need more data
myself I'd perhaps see what a 3 or 4mg daily dose does for your INR and it will take a few days after than change for it to settle into something.

so no, I don't think you did the wrong thing, but you may end up in a fight if you report your dose to them as being different to what it was directed to be. If I were you I'd play the dippy patient and got confused with what I should do because my mind is such a muddle. That way when the INR comes in they'll know what your dose was and can project properly from there (assuming they know how to do that).

I never advocate for varying doses, and certainly not when each dose is essentially double (or half) the other; that's just too much.

Best wishes
 
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Amy

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Post-op day 7 & somehow I thought I didn’t really need pain meds anymore... Ugh!!!! so this is what ‘not staying ahead of the pain’ feels like. Has anyone felt a sharp pain behind where the chest tubes were, on breathing in? Woke up to that, plus worse shoulder and back and neck pain, plus the two spots (left upper thigh and left upper back) that seem to have suffered nerve damage and get sharp shooting pains when I’m in the wrong position - - it’s not fun.

I miss the great heating pad they finally let me use in the hospital.


And - I finally hear my valve today. So funny. Just like an old ticking watch. I always wanted to get one of those, for the sound. Now I don’t have to.
 

Chuck C

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plus worse shoulder and back and neck pain
The two places that I feel pain at this point, 18 days out, are my neck and between some of my ribs. My neck gets pretty stiff most days- neck rubs help. I think they probably had it in a funky position for hours during surgery and it just needs time to recover.
I also get some pain between my ribs- more on the side and between the ribs. They are tender to the touch and the tenderness comes and goes. This may or may not be due to the fact that I had a mini-sternotomy. It is a small opening, and they use a powerful vise to pry the opening up. My guess is that this prying process creates small tears in the costal cartilage between the ribs. I've had similar injuries with sports and it usually heals in a few weeks. Tylenol seems to be enough to take care of that pain at this point.
 

Unicusp

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There was some confusion with the surgeon’s nurse who for some reason thought my range should be 2.0-3.0, with a mechanical valve
So, what is your target range? Mine is as stated above (2.0 to 3.0). Is yours different?
 

Unicusp

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Has anyone felt a sharp pain behind where the chest tubes were, on breathing in? Woke up to that, plus worse shoulder and back and neck pain, plus the two spots (left upper thigh and left upper back) that seem to have suffered nerve damage and get sharp shooting pains when I’m in the wrong position - - it’s not fun.
Yeah, I believe it's nerve disturbance from the surgery (thru small opening) and the drain tubes. Takes time for healing. Movement, stretching and massage helps.
 
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