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My experience with AVR and follow up 3 weeks post surgery

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wondo

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Jul 29, 2020
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Hi again,

So it's been just over three weeks since my AVR and aneurysm surgery. I posted a pre-surgery thread about five weeks ago Two Weeks Remain, so I thought I'd follow up with you guys. As a warning I'm not going to sugarcoat anything, this whole thing was much rougher than I was led to believe. I'm not trying to scare anyone, and honestly maybe not knowing some things is better. I don't know, read at your own risk.

As a quick recap, I'm 29 (30 in October) M, born with BAV, diagnosed with a stable aortic aneurysm about five years ago (~4.9 cm), valve stenosis progressed quickly over the last two years, combined with the aneurysm I was advised to consider surgery sooner than later, I chose sooner and here we are. I chose to go with the On-X mechanical valve because that's what my surgeon recommended for the best possible chance of avoiding re-operation in my lifetime, and this type of valve has one of the lowest bleeding chances.

It's been a wild ride, that much I can say for sure. It's something that I hope I never, ever have to go through again, so I'm glad I went with the mechanical valve.

The days leading up to the surgery were tense, but not bad. I had the help of a Xanax prescription that my primary care doctor wrote me just for the last three days before the surgery to help though. Thank god for that, I think I would have been a wreck. Instead I just kinda glided through the last few days. I had to ask my doctor about it, so if you have anxiety issues like me I highly recommend it. They told me to take the meds the morning of as well. I barely remember the couple of hours before the surgery. I remember getting up, taking a shower, being driven to the hospital and... that's about it. I almost remember changing, getting the relaxing shot, and sliding on to the table. But I was so out of it, none of it bothered me. Complete zombie. Fun fact, even though I warned them that I have a tolerance for anesthetics, they were still really surprised just how hard it was to put me down. The surgeon joked afterwards, "We could have killed a horse with how much we had to give you!" Weird. Anyway, next thing I remember is "waking up" in the ICU. I was still pretty gone though. I still had the tube in my throat, but it didn't really bother me. I couldn't feel much else besides that and these leg compressing sock things that keep your blood flowing, those felt kinda good actually. I remember them telling me to cough and the tube coming out, my first word was "F**K!" because it kinda hurt, they thought that was funny.

I was in and out through the evening/night, but that's where things started to get kinda bad. As the anesthesia wore off, the pain really started to set in. I told them over and over, "I'm at a [pain scale] 6", "I'm at a 8!", "9!", "10!!!", but they wouldn't give me more pain meds saying, "The night doc doesn't believe in giving you more pain meds." That's what I'm the most pissed off about this whole thing, my night in the ICU was a living hell because some old doctor "didn't believe" in giving me stronger meds. As soon as the morning rolled around and the doctors switched, they immediately gave me the pain meds I needed and things were better. They weren't allowing my wife in the ICU because of covid, but I think if she was able to be there I would have gotten better care since I would have had an advocate. Very frustrating.

The following days were hard, but manageable. I was moved to the PCU (progressive care unit) about 32 hours after my surgery, so I wasn't monitored quite as much at that point. Pain was an issue, but I had PCA pump that helped immensely. I think I hovered around a pain level of 5 most of the first three days or so. They said that younger men have a harder time with pain because of their muscle mass? Kinda strange but okay. I didn't sleep much, and I definitely didn't eat. I don't think I ate anything for 2-3 days easy. There were nurses coming in every couple of hours to check my vitals, making nearly impossible to sleep even if I wanted to. I just watched movies and youtube on my phone pretty much all night. I eventually asked my doctor if they could lay off a bit, and they did. They gave me 6 hours to sleep undisturbed after a couple of days.

They got me up and walking the first day, which was a nice distraction. They had me use a rolling walker, mainly so they had a place to put the drainage containers. And that my friends brings me to the drainage tubes. I had FOUR Blake drains in my mid-chest area. Worst things ever. Painful, gross, cumbersome, just awful. They were the source of much of my pain and discomfort it turns out. They took the first one out two days in, and it was like I was a new man. Every time one of those things came out, I felt 100% better than I did before. It was like my recovery was tied to those stupid drainage tubes. The doctor was acting like they weren't a big deal, and that the last tube would stay in until I left, even though there was no more drainage. I had to talk them into it, but they finally took the last one out on day 4. I started quickly recovering and was up and walking around no problem at all, I was finally feeling better and started eating again. Pain was down to a 2-3 level with meds now.

Now I was mainly just staying in the hospital to get my INR in check. I'd been on Warfarin for three days and my INR just wasn't budging for some reason. Finally, on day 4 it was finally starting to go up. They told me if it was climbing fast enough the next day, I could go home. Unfortunately, no dice, it was still too low. That night was extremely rough for some reason and I had a mental break down. Living in the hospital, not being able to sleep, and not being able to go outside was really starting to get to me. When they told me my INR was still too low for me to go home, I told them I couldn't do another night here. The cardiologists talked it over and told me that they could send me home with several days of Lovenox injections if 1. my insurance approved it and 2. I felt comfortable giving myself the injections. Yes please god yes anything to get me out of here. The insurance company approved it and I was sent home the afternoon of the 5th day. I had to give myself a shot in the lower abdomen twice a day for two days while my INR stabilized. They hurt, but it beat being in the hospital!

Coming home was harder than I thought it would be. I was still in a lot of pain, I still couldn't really sleep, and eating was still a chore. I think I ended up losing about 15lbs (185lbs -> 170lbs), and I'm already thin. I just tried to take it slow, walk when I could, do the breathing exercises, etc. Everyday I saw improvement. Yeah there were some bad days where I was wiped out, but there was not too many of those. I stayed on the narcotic pain meds about four more days, then was just on Tylenol 1000 mg every six hours, which did the trick. I started rapidly improving about 10 days after surgery. I was taking longer and longer walks, eating and sleeping were better.

That continued until we arrive at today, over three weeks later. I feel pretty normal for the most part, I walk about an hour a day, trying to get my endurance back. I started work again on the 31st of Aug (software engineer), and had my first session of cardiac rehab today. Sleep is still kinda an issue, but that's pretty much it. The beta-blocker I'm on kinda screws with my blood pressure and makes me feel lightheaded at times, but they said they'll take me off that soon. I'm down to 500 mg of Tylenol every 6 hours. The metallic "ticking" sound of the valve is definitely there, and loud enough that other people can hear it. It already doesn't really bother me. And when going to bed, it's pretty easy to get away from it. Laying in a number of positions completely silences it, which I found kinda surprising.

Things are really on the up and up. Really great prospects for the future, no activity restrictions after three months. I really feel like the worst of this is over.

I know that was SUPER long, but maybe it will be of some use to someone. And I enjoyed sharing this, I think this is the first time I actually really reflected on this experience as a whole. Best advice I think I can give is to let go and jump into it, try your best to not overthink it, and advocate for yourself! I think sometimes doctors will act like something isn't a big deal until you tell them it's important to you.

Good luck with your own adventures everyone, I wish you the best!

PS: Here is a picture of me on the day I got to go home.
 

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Seaton

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Great write-up @wondo. It’s good to record this while it’s still fresh in your mind. Can be of help for those still in the waiting room, too. I know I found such reports helpful before my surgery.

I’m glad the worst is over for you. Seems everything’s going in the right direction. Looking good in your photo!

Wishing you the best for the recovery days ahead. Onwards. 😎
 

pellicle

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I hope the remainder of your recovery is smooth. You don't want a rough ride, such as infections in the wires

best wishes
 

ATHENS1964

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Good recovery, I was in the same boat a month ago, it is important that we are alive and to enjoy the life we have in front of us.
 

Freebird

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Thanks for the update. I'm a little over a week past my surgery and glad to have it behind me. Each day brings an interesting little challenge, although thus far, thankfully the challenges are little.
 

KatherineA

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Thank you for the write up @wondo! I’m very happy for you that you are home and mending quickly at this point.

I can so relate to your experience with the not eating and the not sleeping. Either I was nauseous and couldn’t at first, or no one told me I could should order something on my phone, or I was justo tired and strung out from the lack of sleep, the Stuff they gave me in ICU made me feel like clockwork orange, the constant checks, people/staff in my room seemingly constantly. I finally said enough the third night during the 2am blood draw vitals thing, curled up in a ball and would not cooperate, cried for sleep. The tech finally left. After the 6 am wakeupon the fourth day, I closed my door. Put a chair in front and sobbed as loud and long as I felt like it.

I wasn’t sure anyone could hear or not. but I really didn’t give hoot. Later that morning , one of the surgeon’s came in and said would you like to leave today but stay in Cleveland for 3-4 more days? OMG get me out! I was out in a motel on the Cleveland campus by 4 pm. First good sleep I had in days.
 

wondo

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I hope the remainder of your recovery is smooth. You don't want a rough ride, such as infections in the wires

best wishes
Wowzers that looks painful! I think I'm in the clear as far as infections go, all of my wounds are closed up at this point, fingers crossed.

Actually just went off my beta-blocker today, so hopefully that all goes well.

Thanks for your support everyone.
 

pellicle

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Wowzers that looks
it was some months of debilitating difficulty ... I hope you never experience it. Mine emerged a year after surgery, however there had been symptoms at the start (ignored) and messages from my body in the intervening times.

I understand its rare.

But wanted to just add context that most people get a smooth ride and a glimpse of what a rough one actually looks like.

I hope you have an unremarkable recovery, follow directions, don't lift things and do follow directions about recovery (yes, I know I said that twice).

"'Tis the note of the Jubjub! Keep count, I entreat;
You will find I have told it you twice.
Tis the song of the Jubjub! The proof is complete,
If only I've stated it thrice."​

:)
 

rich01

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It surprised me that the worse part of being in the hospital was being in the hospital. How are you supposed to sleep and recover when they come in every 2 or 3 hours and run one test or another. I asked the nurse when she would be coming in so I could try to schedule my sleep. She didn't tell me about the guy who came in to weigh me at 3 am or the other nurse who came in at midnight. Between 9 pm and 6 am, I think they came into my room at least 5 times.

Glad you're doing better.
 

slipkid

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Thank you for the write up @wondo! I’m very happy for you that you are home and mending quickly at this point.

I can so relate to your experience with the not eating and the not sleeping. Either I was nauseous and couldn’t at first, or no one told me I could should order something on my phone, or I was justo tired and strung out from the lack of sleep, the Stuff they gave me in ICU made me feel like clockwork orange, the constant checks, people/staff in my room seemingly constantly. I finally said enough the third night during the 2am blood draw vitals thing, curled up in a ball and would not cooperate, cried for sleep. The tech finally left. After the 6 am wakeupon the fourth day, I closed my door. Put a chair in front and sobbed as loud and long as I felt like it.

I wasn’t sure anyone could hear or not. but I really didn’t give hoot. Later that morning , one of the surgeon’s came in and said would you like to leave today but stay in Cleveland for 3-4 more days? OMG get me out! I was out in a motel on the Cleveland campus by 4 pm. First good sleep I had in days.

Oh yeah, I can relate muchly as well.

I was in the hospital I think around 10 days overall (?). I'm not sure now. Think I was in intensive care about 4-5 days (?). Then moved to a recovery floor for operations, mostly heart operations I think.

Although the staff visits in ICU seemed almost constant I was barely given an uninterrupted 1-2 hours rest once I got out of there too. Seemed like blood draws (& painful lovenox belly shots) every few hours not to mention all the other stuff going on. I even got a belly injection which was some kind of mistake (!!! caught by my eldest sister who happened to be in the room at the time and familiar with this stuff, the nurse insisted on doing it anyway but once I was discharged and had my first visit with the surgeon staff she asked about it & we found out she was 100% correct and should not had been administered).

Anyways I was a human pincushion for like 10 days, and beyond exhausted from not only the surgery but the recovery as well. Covered in black/blue marks not to mention being sawed open in half & joined back together with glue and guitar strings).

Wish I had thought of closing the door and blocking it, rolling up in a ball and refusing to cooperate like you mentioned, although doubtful I would have gotten away with that.

Btw, I can still smell the choclately odor that eminated from the nurses with their blood draw baskets. Sometimes the smell woke me up b4 they did. Anyone else notice that? Something in their kits had a very strong odor, almost like chocolate.

Wow, I just remembered that in ICU I was even used for PRACTICE by one of the new nurses. Another nurse came with her into the room, talked to each other as if I was not even there, and explained/showed her how to do blood draws, of which several were done on me the remainder of the night until she could get it right.

Oh yeah, and this was bizarre, the room they moved me into in cardio recovery or whatever that floor was was fairly new. There was an electrical outlet across from the foot of the bed which almost every 5 minutes would blink (it had 2 colored lights on it) and make zapping noises. Very hard for me to sleep with that going on. I complained about it constantly but no one paid any attention to me about it until the day that I checked out (someone from maintenance stopped by after I mentioned it to the nurse who was taking care of the discharge orders, I listed it as one of the comments about the stay on the form I think).
 

LondonAndy

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It surprised me that the worse part of being in the hospital was being in the hospital. How are you supposed to sleep and recover when they come in every 2 or 3 hours and run one test or another. I asked the nurse when she would be coming in so I could try to schedule my sleep. She didn't tell me about the guy who came in to weigh me at 3 am or the other nurse who came in at midnight. Between 9 pm and 6 am, I think they came into my room at least 5 times.

Glad you're doing better.
It's kinda reassuring that it is not just our UK's NHS where sleep is a problem! I am a great believer in the recuperative power of sleep, and yet it seems so difficult to come by in hospital. Whilst I was awaiting transfer from my local hospital to the heart specialist centre, I was in a bay with 3 others, all of us hooked up to the monitors on the wall, and close to the nursing station as we were considered "at risk" patients. One guy in the bed opposite lived very locally, and went home to sleep during the day because he knew we wouldn't get much sleep each night. I was very glad to spend my last few days after the surgery in my own room, and would strongly recommend to anyone going in for something that requires an overnight stay to take good ear plugs. (I later discovered that for planned surgery cases these were issued to you in advance, but my surgery was emergency and didn't get any).
 

wondo

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Update time, spent the weekend in the ICU.

I started cardiac rehab last Wednesday and everything seemed to be going great. They limited my activity to keep my heart rate under control, and I did my absolute best to comply. During the second session last Friday, things started off normal, but when they switched me from the treadmill to a bike they started noticing some arrhythmias and asked me to stop. I didn't feel much yet, maybe a little weird. They briefly had me get back on the treadmill to walk slowly for a bit, but then they saw some short (2-4 seconds long) bursts of ventricular tachycardia. They called 911 and before I knew what was happening there were paramedics and hospital staff everywhere. The VT felt very similar to a panic attack, but kinda like holding your breath as well, and with all of the activity I actually started panicking which of course didn't help. By the time I was being wheeled out there was no more bursts of VT, and I didn't have any more over the weekend. But they kept me there "just in case."

The doctors think it was because they took me off the beta-blocker too soon, and maybe a combination of being dehydrated and overdoing the exercise. So far, they don't seem to think it will be a reoccurring thing. I have to say though that this feels like a real wrench in my recovery. Spending the weekend in the ICU was pretty demoralizing and I'm not really sure how I'm going to get myself to go back to rehab after all of that.

I have a bunch of appointments coming up now, but I'm really not sure what to think.
 

KatherineA

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Wow. I’m so sorry for your setback @wondo Looking back at your first post, you were 3 weeks September 3? Maybe it was a bit soon for rehab? Or as they opined, the beta blocker to be stopped
I know I was very impatient to start rehab but could not do anything according to surgeon for 8 weeks. And, as good as I thought I felt after 8 the first week was tiring and a bit stressful. It was probably a combination of all that for you with this episode and will resolve ok

I also was on the beta blocker a long time, from January to July
 

LondonAndy

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I agree with Katherine A - an unfortunate combination of things. My rehab here in the UK did not start until at least 6 weeks after surgery - in fact it was probably more like 2 or 3 months after. I am permanently on beta blockers, unfortunately, and have been told not to stop them. If ever they want to take me off them the reduction in dose must be gradual.

Finally, I had a bad dehydration issue probably 6 to 9 months after surgery, though I am on a water table (Furosemide, or "Lassix" in the US) which probably didn't help. I was back at work in the office and had a very busy day, and looking back afterwards I realised I hadn't drunk much water/fluids. That evening I had a sudden dizzy spell, was sweating and a bit nauseous - frankly I thought I was having a heart attack! However, after this brief spell I felt better and got a taxi to hospital. Many tests later the diagnosis was dehydration! I have been careful to drink plenty of water and other drinks ever since.
 

Freebird

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Wondo, I'm sorry to hear about your not-so-fun ICU visit but I'm glad you are safe and getting the care you need.

I'm three weeks post surgery and started rehab today. I am still on metoprolol, but I appreciate the reminder of the importance of staying hydrated. Will be sure to bring water with me for my next session. I'm most interested in being monitored as I exercise. I'm hoping it gives me confidence.
 

Seaton

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Sorry to hear of the recovery hiccup, Wondo. Hoping things settle down soon and you can ease back into rehab without incident.

Like @LondonAndy I started rehab some 3 months after surgery. A tad late, perhaps (there was a bit of a backlog), but I was glad I did it. Helped physically and psychologically.

There were a few in my sessions who had “incidents” but as the weeks progressed they all seemed to find the right pace and balance and things went much more smoothly for them.
 
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Superman

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Just found this. Also share sympathies on the set back. Still early yet, and despite all the text books, there are no text book cases. I recall feeling great two weeks out, then developing pancreatitis and going backward for a bit.

Stay with it. This will seem like a distant memory soon enough and you’ll feel “normal” again.

Many doctors make beta blockers permanent after AVR. Mine have been for almost 11 years now. Oddly, never had to take them after my first surgery 30 years so.
 

slipkid

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Cardiac rehab only 3 weeks out? Wow. I was just barely walking around in small doses. And still in so much pain from the OHS surgery any kind of workout was unthinkable. My zipper pain did not subside until after like 7 weeks later. Don't think I was allowed to start rehab until at least week 8 or 9, if not later (?).

Hang in there. I found the cardio rehab to be extremely helpful btw. But don't do too much too soon.
 

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