Severe Aortic Regurgitation Leading to Second Surgery

[AZATADINE]

Be careful when you get discharged about your warfarin dose/INR. My INR hovered around 1.1 or 1.2 for a few days while waiting to be discharged and they crept up the dose.

When I finally came within range I was discharged. I got my INR tested 2 days after discharge and was in the middle of the range. I asked for another test a couple of days later just to be sure that I wasn't going to go above range and I did go above.....I ended up hitting an INR of 5.....

We got it right after a week or two of fine tuning but just be careful about the lag. Make sure you get tested regularly until it settles down. Then it'll push out to every week or two.

 

[skier]

INR was 1.2 this morning.

Yesterday was 1.1. The docs increased my warfarin to 7.5 mg today, up from 5 mg the last two days.

Crap, INR was 1.3 this morning.

I hoped to be released today and test outpatient until I'm therapeutic. I was otherwise ready to go home two days ago.

Nope, they just hung a heparin bag to bridge.

I've got to remember it's a bump in the road and be grateful for how well I'm doing.

 

[BillDaThrill]

Sorry about the slow ramp up. I know you must be dying to go home. Hang in there, that INR is going to come around.

 

[pellicle]

Crap, INR was 1.3 this morning.

I hoped to be released today and test outpatient until I'm therapeutic. I was otherwise ready to go home two days ago.

Nope, they just hung a heparin bag to bridge.

I've got to remember it's a bump in the road and be grateful for how well I'm doing.

I don't know what it is but hospitals seem hapless at managing INR (and clinics not much better)

Heparin in the mean time is proper protocol, and if its going into your canular then no biggie, its when they give you a take home kit for self injection that its :-(

For reasons that I can't understand (well can but don't wish to express) they treat everyone the same and fail to respond to whats happening with increased doses. Still it takes a good 4 days for the drug to accumulate in your system and kick in the mechanism of your body.

as the position title (of patient) suggests, just be patient ... soon it'll all be in the rear view mirror (and you can then start fighting with your clinic ;-)

 

[skier]

INR was 1.6 this morning, up from 1.3 yesterday.

My surgeon was kind enough to stop by and chat. He wants it at 1.7 or more to go home to be safe, so they will test me again this afternoon. Hopefully, giving the stew a little more time to brew will get me there—otherwise, just one more night.

 

[AZATADINE]

Thats good. It'll probably continue to rise after you get discharged so be sure to get an INR test within a day or two of discharge and another a few days later just to see what the trend is. The trend is important at this early stage.

 

[Chuck C]

The trend is important at this early stage.

Absolutely. I would test frequently the first couple weeks after release.

 

[pellicle]

INR was 1.6 this morning, up from 1.3 yesterday.

excellent, now absolutely do not allow them to talk your dose down until you see a taper. Ideally you'll see 0.2IU (INR Units) of growth per day until it starts to taper.

what is your daily dose by the way?

 

[pellicle]

@skier to give this a number (frequently is a little qualitative) I'd test daily at more or less the same time. I know however Chuck may test 3 times daily (which you can do if you like) but its up to you.

Absolutely. I would test frequently the first couple weeks after release.

 

[skier]

Still here, night 7. INR hostage.

My surgeon wants to see 1.7 to release me. I tested 1.6 this morning. The plan was to test again in the afternoon, and surely it would go up 0.1. Nope, still stuck at 1.6 this afternoon.

I had my first dose of 5.0 on 6/3. These are my doses and INR. Just one more night, right?

 

[Chuck C]

I know however Chuck may test 3 times daily (which you can do if you like) but its up to you.

lol. I would just test daily after release. However, when I wanted to get a soft landing right at 1.4-1.5 I did test three times per day for a couple days.

 

[pellicle]

lol

hey, totally not judging negatively here ... data data data right ;-)

 

[pellicle]

I had my first dose of 5.0 on 6/3. These are my doses and INR. Just one more night, right?

not sure why there is an INR in there and no dose ... I'm going to go out on a limb and say 10 is your post surgical stable dose

 

[RPG]

Hey @skier, you probably don't remember me, but I'm the 36 y/o who had a valve replaced for the same reason in December (the asymptomatic guy with the super low EF rate). Sounds like you're doing well! Sorry to hear that they're holding you for INR levels -- I too was an INR prisoner. It was extremely frustrating. The surgeon eventually agree to release me even though I wasn't therapeutic after my wife and I convinced him that we had a strong support network, would continue to test/monitor, etc. He also knew that I was miserable behind bars, so that may have helped too. Anyway, you're not alone. Best of luck at your next parole hearing.

 

[Chuck C]

Still here, night 7. INR hostage

I too was an INR prisoner. It was extremely frustrating.

I too was a prisoner at the end, although not for INR, but for afib reasons- the nerve of them. I finally had to take matters into my own hands to get out, most of which was caught on the video surveillance system of the hospital, as shown below. It's always an option- just sayin:

 

[skier]

Best of luck at your next parole hearing.

Thanks! The parole board didn't budge, but my numbers finally did this morning! I hit 1.7, so I'm free to go!

Note my therapeutic range is 2-3, so they are letting me out a bit early.

The cruel and unusual thing is I spent all seven nights in the cardiothoracic ICU! I was cleared to step down the day after surgery, but there were never any rooms available. That's because all the hospital floor rooms are full. All backed up.

It sucked not to have telemetry and to be wired to the monitors the whole time. I needed someone to walk with me as a result. My first OHS, I walked way more and was so much happier with the freedom.

Tough to complain, though. I'm super grateful to be feeling great and doing so well. Many of my neighbors in the ICU were not as fortunate.

 

[pellicle]

I too was an INR prisoner.

love this term

self testing and self management for me. I broke out after the first year. Went from ~60% in range to >95% in range.

I also love the freedom to go where I want (Australia, Finland ... wherever)

 

[skier]

I'm almost four weeks post-surgery and doing fantastic. I got my St. Jude mechanical aortic valve on June 1st.

I doubt I could be doing much better. I feel great and have worked up to walking twice a day for 1.5 to 2.0 miles at a very normal pace. I start cardiac rehab this week, where I'll start pushing the intensity and strengthening my sternum under their guidance.

The plan to get ready for ski season, approved by my surgeon, is ten weeks of cardiac rehab three times a week. If it goes well, I'll run a 5K in mid-October and another on Thanksgiving. I'll also do some fall hikes and bike rides at altitude, sternum permitting.

So great to have the surgery behind me!

 

[Timmay]

Honestly - you’re lucky they held you hostage. My hospital released me with an INR of 1.1 with no real plan except to turn me over to the local Coumadin clinic. Completely irresponsible. I was out of therapeutic range for several days.

Thank goodness I was already ready for self testing and began immediately.

 

[Timmay]

I'm almost four weeks post-surgery and doing fantastic.

…

I doubt I could be doing much better. I feel great and have worked up to walking twice a day for 1.5 to 2.0 miles at a very normal pace.

Congrats! I’m 5 weeks tomorrow and started Cardiac Rehab this past Friday.

My 3 struggles at this point are

1) Musculoskeletal pain in the chest as my muscles, nerves, and whatnot are trying to come together.

2) Getting my lung capacity back. I can get my spirometer to 2500cc right now. But that’s my current limit.

3) Pretty tired most of the time.

How are you doing with those 3 things?

My walking is good like yours. I’m doing 2.5+ miles a day.