First post from Maryland - advice and support needed!

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Hi Mark,

Sounds like you needed the "maintenance". Here's hoping that the wrinkles you are experiencing are par for the course and that you will heal quickly and that they will diminish quickly as your body adjusts.
 
Looks like I’ll still be here a while. They forgot (!!) to give me Coumadin two days ago when they transferred me from ICU to step down . My INR this morning is still sitting at 1.3. On a brighter note, everything else seems to be getting better daily with no significant issues. Thanks to all who keep following these updates. Looking forward to sharing my perspectives on here in more detail once I’m home.
 
The weird (minor?) stuff I’m dealing with today:
  • Taste is still weird at day 5. Everything tastes salty. Orange juice is the most normal tasting thing for me. Maybe water too. Everything else is gross.

Now that you mention it my tastebuds were majorly screwed up while I was in the hospital. I thought there was something wrong with the food but cannot recall the details. Then during home recovery I was on no or low salt diet for awhile. When that restriction went away I remember eating out somewhere, had a chicken pot pie, something I used to get & love. But the salt in that thing burned my tongue & my throat!! It was awful. Took a while to adjust and get back to normal tastes, or adjust to salt again.
 
Feeling pretty good today, 5 days after the surgery began (to the hour). Head is pretty clear, pain is very light when I’m sitting still. They’re trying to get my INR right which is slow moving. It was still only at 1.3 yesterday and they haven’t gotten the overnight result back yet surprisingly. On heparin drip in the meantime.

Bavaria’s speculation (which we talked about above a few weeks ago) was independently echoed by Svensson I think. He said the valve was actually unicuspid (not sure if he means fused or conegenital) and thatthe calcification was unusually troublesome. He said it was under the valve and like sandpaperwhatever that means, and actually said he was surprised it didn’t result in strokes which is a scary thing to hear! In fact, the first night of surgery I had transient left eye vision loss which could have been either ocular migraine or retinal artery occlusion. Fortunately my vision is fine now but that’s still very scary. They’ve done two CT scans and they’re not seeing any damage or blockages. I’m lucky so far.

But the calcification story I’m getting now seems consistent with Bavaria’s “throwing a clot” theory, which tells me I probably should have been more aggressive getting this surgery. Just moving forward and thanking my lucky stars!
Really glad to hear that you made it through the other side and are feeling good! Hopefully they can get your INR under control soon.

"I probably should have been more aggressive getting this surgery. "

I am becoming more and more convinced that getting surgery early, rather than delaying, is the right thing to do. I opted to get mine as soon as I crossed the line into severe rather than wait for symptoms and am very glad I did. 1) my recovery went great but also 2) When they opened me up the surgeon said that I was actually not severe, but critical. He told me I was a ticking time bomb.

It was a hard decision to make, because prior to surgery I felt great and had to trust the echo that my condition had worsened. This is a very intimidating surgery and I think human nature is to put it off as long as we possibly can, but the outcomes are not optimal when folks delay too long unfortunately. And, then there are those who we never hear from that put it off too long and have sudden death. As my surgeon put it, sometimes the first symptom is sudden death.
 
First surgeon I met with told me to come back when I have trouble getting up the subway stairs. Second surgeon had me do a stress echo. I won against the treadmill. Thought I was out of the woods. The ejection fraction didn't agree. Got surgery two months later.

One year later, the biggest difference is that my pulse is finally normal. It was SO slow before.
 
Gosh, it just won’t clot. Heparin works as advertised apparently. I’m still getting a small leak that needs to be changed every few hours. The surgical fellow even popped a couple new stitches in this afternoon since he thought it was bleeding from the original suture site. The NP just wrapped me tight and used some special clotting mesh and it doesn’t seem to have worked as I feel the “tickle” of bleeding under there still.
 
Hi

Gosh, it just won’t clot. Heparin works as advertised apparently. I’m still getting a small leak that needs to be changed every few hours.

that's annoying, I hope it stabiliszes soon ... I have the view that they tend to over do the anticoagulation but in reality we're still learning about these "incidental" things.

Hang in there mate, and sorry that you're learning why the subject in a hospital ia called a "patient".

Best wishes
 
Glad you're on the mend and hopefully soon, you'll be home! Hope they get your "tickle" under control soon! Frustrating, I'm sure! About the food, I had the same thing, nothing tasted good! It lasted a few weeks. Also, smells really bothered me too and it seems everyone who worked in the hospital took showers in perfume! Wearing masks actually helped! (my surgery was in Dec.2020-near the peak of COVID)
 
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Don’t worry... & to some extent, try to be okay with things taking their time... even though I know it’s be more reassuring if all healed right away.. And don’t try and walk too much or do any of the arm stretching and stuff, & just stay still so it can heal (I know you’re probably already doing this, but just in case). I hope you’re all set as soon as you can be.
 
Glad you’re feeling better. May be completely different from what you experienced since your vision impairment was after surgery, but Vasospasm from migraine can happen and cause retinal branch occlusion. It is rare but happened to me. There are some studies about it online. Have seen neuro opthamologists and retina specialists at Wilmer Eye and Katzen in Baltimore as well as Weil Cornell in NYC who have seen it before - all from people who had a migraine with aura that left some vision impairment. My neuro ophthalmologist in NY is studying it and has fellows researching it. I was getting several migraines a week at one point. Now taking supplements that have helped a lot.

Thanks caro- could you recommend someone in particular at Wilmer to talk to about this?
 
@MarkZ I saw Dr. Carey at Wilmer. Thought he was great. He saw one instance of vasospasm from migraine causing permanent damage (other than me). He saw them in the ER. It was not someone he sees regularly. I saw Dr. Harlan at Katzen when it happened. At first, I thought it was a retina tear. Saw Dr. Carey at Wilmer for a second opinion since he is a neuro-opthalmologist. He agreed with Dr. Harlan.

Dr. Harlan knew of two instances of vasospasm happening during migraine before he saw me. One woman in her 60's and one who was an adult when she saw him, but the migraine that left vision loss happened when she was around 10, if I remember correctly. Both doctors were great. Saw Dr. Harlan for a six month follow-up as well. Dr. Harlan was spot on. Right after it happened, he did an angiogram. He said, "you may want to get a MRI, echo, etc to rule out everything else, but I'm 99% sure it was from the migraine". I did all the tests and had EXTENSIVE bloodwork done. The doctors agreed it was from migraine. My neuro-opthalmologist at Weil Cornell has my cardio prescribing me a small dose of amlodipine once a day. Her fellows have found that this could be a preventative to vasospasm. Of course, preventing as many migraines as possible is the best option. One cool thing- the fellows at Weill Cornell hadn't seen a BRAO where mine happened, so they took lots of photos of it to use for their research. My eye is famous.

I'm sorry about the INR. That is frustrating. Hope it gets up there soon.
 
2.5 goal. They had to end up putting in St Jude due to the calcification they encountered.
Same here- 2.5-3.5 goal with my St. Jude.
Hang in there. Your INR will be in range soon and they will immediately stop the heparin. Right now you are likely having difficulty clotting as your getting the double whammy of AC, between the heparin and the warfarin.
 
The weird (minor?) stuff I’m dealing with today:
  • One of the three drainage sites began bleeding again today, tube was removed yesterday morning. They’re changing the gauze pad every hour or two
  • Taste is still weird at day 5. Everything tastes salty. Orange juice is the most normal tasting thing for me. Maybe water too. Everything else is gross.
  • My temperature has been mostly in range but I get hot and cold spells separated by minutes. It’s wild.

You seem to be edging close to a hospital discharge. My discharge was also delayed about a day for drainage discharge. They may have pulled the drains a day early In your case.

I also had major tasting issues, yes for weeks any salt was so accentuated and unpleasant, including butter etc. But food also no longer tastes great.

Are you also experiencing an abdominal bloating feeling?

Am now 4 weeks out and i still have altered taste buds, am now wondering if one of my new hospital prescribed meds might be the cause Of altered taste.
 
I’m at day 8 now and INR is 1.7. They’re telling me it’s the only thing holding me back. The bleed stopped. My only other issues are gout (which is resolving, but frustrating when it comes to trying to move) and constant migraines. I’ve had like ten migraine auras the past 36 hours. Fortunately the pain is pretty manageable so I’m comfortable at least. Just stuck in here a while longer.

I want to go home when I’m discharged and they said I could choose to stick around the area for a couple days and come back in for a final check before I leave. But I also have a doc appointment at home for this coming Friday so I’m leaning towards going home straight way. Thoughts? What is this final check?
 
I’m at day 8 now and INR is 1.7. They’re telling me it’s the only thing holding me back. The bleed stopped. My only other issues are gout (which is resolving, but frustrating when it comes to trying to move) and constant migraines. I’ve had like ten migraine auras the past 36 hours. Fortunately the pain is pretty manageable so I’m comfortable at least. Just stuck in here a while longer.

I want to go home when I’m discharged and they said I could choose to stick around the area for a couple days and come back in for a final check before I leave. But I also have a doc appointment at home for this coming Friday so I’m leaning towards going home straight way. Thoughts? What is this final check?

Final check is normally done on day of discharge and may include, blood test, covid test, BP and oxygen, EKG.
Your discharge papers will also include a new list of the hospital prescribed meds, as well as a recommended procedures for the coming 5-6 weeks.
For both of my OHS, once i was discharged from the hospital, i have not gone back to the hospital for any review. All further reviews are done by GP and Cardiologist
 
The two-days-after-discharge follow up appointment is just an ekg, I THINK.... So as long as you’re feeling okay, you can just check in with a local doctor.

Just make sure to have any and all unanswered questions ready to ask the NP, because there’s a lot of information they won’t just volunteer - like when you might be able to come off the Metoprolol, what arm exercises you should do and how soon, what normal incision healing looks like and how long it takes, foods high in vit k to avoid, (I just discovered, by myself unfortunately, that carrot juice really decreases the effect of warfarin) etc etc.

And if you don’t use MyChart, you could get your medical records while you’re there. I forgot, & it cost $20 and I had to wait two weeks to get mine.
 

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