New member: 56 yo facing unexpected AVR before the end of the year

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Wishing John the best of luck for today's procedure and a speedy recovery!

It looks like some great advice from those on the forum who have been through surgery.

I would suggest:

-Walk a lot in recovery- as much as they ask you to, but maybe even as much as they allow you to. Even in ICU now they encourage walking and it is very important to get things circulating again.
- Use the spirometer at least as often as they suggest. They will likely guide you a few times per day, but often patients are expected to do it several times/day on their own as well. Don't cut corners here. It is not the most comfortable thing to do, but super important to get those lungs opened back up.
-Stay ahead of the pain with the pain meds. The older nurses seemed to be of this school of thought. However, it seemed that the nurses who went through nursing school in the last 10 years were taught that if they don't wean their patients off of pain pills immediately they will all become addicts. I don't down play the risk of pain pill addiction at all, but there is a time and place for pain medications and after OHS is definitely a time when you should be allowed to take what you need for a few days to control the pain. Once I realized that I would have to self advocate in this area, I advocated for and received a PCA pump, which allowed me to self administer pain med with the push of a button, as needed. I only used it when needed and it was a game changer for me. They have it set up so that you can only push the button so often- for me it was limited to once every 10 minutes. I used it less than every 30 minutes on day one and less than once per hour on day 2 and by day 3 I didn't need it anymore. The amount of pain really varies patient to patient. He may find that by day 2 he is fine with just Tylenol, but for some the pain is more intense, but almost a complete non-issue once you get ahead of the pain with meds.

Please keep us posted on how his revocery is coming along.
 
So this:

I wished my doctor would have had me do it sooner ,
then this (I assume in reply to that)
There is a recurring theme here

it most certainly is, but the good ship "Cardio-Thoracic Surgery Unit" is hard to shift direction slowly, especially with only a very few people in the steering house.

another recurring theme here (if I may flog that dead horse) is that many worry about how difficult life will be on the horrible rat poision and report within a year or two (or three) when replying to someone (who like they were) is in the waiting room that "I thought warfarin would be a big deal but it isn't".

apparently nobody believes that when they hear it and retort "what would you know about being on warfarin you aren't a doctor". Which amuses me because most doctors aren't on warfarin themselves.
 
I'd add to this advice:
Even in ICU now they encourage walking and it is very important to get things circulating again.
that if you are a male, sit down for your first pee after they take the catheter out ... its seldom in your control where it chooses to go.
 
(John’s wife here): surgery yesterday was a breeze, but the ICU care has been disappointing. They forgot to give him his pain meds last night, and I had to remind the nurse about his meds today, they decided to put him in a chair for breakfast (his first time sitting up) then left him for an hour without moving the tray close enough for him to reach his food. I saw the surgeon immediately after the procedure just long enough for him to say “surgery went well, no complications”, shake my hand, and walk out the door. Neither of us have seen a dr since.

I can’t be there with John to advocate for him as much as I’d like (I can only be there about 4-5 hours a day), and he’s still weak from surgery so he’s not speaking up like he should. I know it’s Christmas and they are possibly short staffed, but when he asks for something simple like water and waits for hours, or is in pain and gets his meds late, I get pissed. I think because he’s relatively young they assume he needs less attention than their other patients. At least I hope so. The alternative is that they just don’t care. The floor isn’t even that busy (it’s all cardiac patients with several empty rooms). Thanks for letting me vent! I’m sure things will look better tomorrow.
 
Something I wish I’d done post-op (I guess I had too much else on my mind) was to have a big ass candy dish on my hospital table, full of all the best candy, so the nurses would be more likely to come visit and check on me more often.

I know it’s frustrating and sad. Are you at the Cleveland Clinic? Sounds like how it was for me there. Just be there beside him as much as you can, try to get him to advocate for himself, (even up to and including refusing care by any passive- (or not) aggressive nurses) and make sure he does all the exercises he can so he can go home sooner rather than later.

This too will pass.
 
I can’t be there with John to advocate for him as much as I’d like (I can only be there about 4-5 hours a day), and he’s still weak from surgery so he’s not speaking up like he should
Thanks for the update.

Please keep trying to advocate for him and encouraging him to advocate for himself.

They forgot to give him his pain meds last night, and I had to remind the nurse about his meds today,
Crazy. But, I am not surprised at all. One really does need to self advocate at times. It would be ideal if nurses did not "forget" to give pain meds, made sure that patients can reach their food tray, and remembered to bring them water, but the reality is that it is hit and miss with how attentive they are. Although I did not experience any of these issues, I am not surprised. Keep advocating!
 
After 5 days in ICU they sent John home (they had no bed space in a step down unit and I guess decided they needed the ICU bed). Never saw the doctor, not once. Recovery at home going much better (meds are given on time & nurse/wife making sure the patient eats & does his breathing exercises). Takeaways:
1)stay ahead of the pain the first day or two. Push that call button; don’t wait for the nurses to come by
2)try to avoid the narcotics offered.ask for something else. They just make you sleepy and the best way to get your lungs functioning is to stay upright, awake, & use the spirometer
3)do those spirometer exercises (if you watch television, do a breathing exercise on every commercial break)
4) have someone bring you nutrition drinks (boost, ensure, etc) and snacks you might actually eat. Hospital food is terrible and it’s hard enough to eat if you have no appetite.

There is so much valuable info in this forum. We were given very little information by the nurses, so it really helped to b we able to search through these posts to see some “real world” experiences!
 
After 5 days in ICU they sent John home (they had no bed space in a step down unit and I guess decided they needed the ICU bed). Never saw the doctor, not once. Recovery at home going much better (meds are given on time & nurse/wife making sure the patient eats & does his breathing exercises).
That's concerning!
Wishing and praying for John's smooth recovery.
 
After 5 days in ICU they sent John home (they had no bed space in a step down unit and I guess decided they needed the ICU bed). Never saw the doctor, not once. Recovery at home going much better (meds are given on time & nurse/wife making sure the patient eats & does his breathing exercises). Takeaways:
1)stay ahead of the pain the first day or two. Push that call button; don’t wait for the nurses to come by
2)try to avoid the narcotics offered.ask for something else. They just make you sleepy and the best way to get your lungs functioning is to stay upright, awake, & use the spirometer
3)do those spirometer exercises (if you watch television, do a breathing exercise on every commercial break)
4) have someone bring you nutrition drinks (boost, ensure, etc) and snacks you might actually eat. Hospital food is terrible and it’s hard enough to eat if you have no appetite.

There is so much valuable info in this forum. We were given very little information by the nurses, so it really helped to b we able to search through these posts to see some “real world” experiences!
Oh my gosh this is awful. I’m so sorry to hear this. I had fantastic icu nurses but the floor nurses were very disappointing (I started doing more on my own and that just ended up causing me
More pain). I did have an amazing surgical team who saw me at least 2 times a day. I’m sure he will do much better at home now. Please continue to vent and update when needed. I just home Monday and surgery was 12/22
 
Oh my gosh this is awful. I’m so sorry to hear this. I had fantastic icu nurses but the floor nurses were very disappointing (I started doing more on my own and that just ended up causing me
More pain). I did have an amazing surgical team who saw me at least 2 times a day. I’m sure he will do much better at home now. Please continue to vent and update when needed. I just home Monday and surgery was 12/22
Truth about nutrition drinks. I had no appetite and a lot of nausea and the food was awful on top of all of that. I drank the shakes, at least tried to get one down for a whole day, and that did help.
 
Oh my gosh this is awful. I’m so sorry to hear this. I had fantastic icu nurses but the floor nurses were very disappointing (I started doing more on my own and that just ended up causing me
More pain). I did have an amazing surgical team who saw me at least 2 times a day. I’m sure he will do much better at home now. Please continue to vent and update when needed. I just home Monday and surgery was 12/22
Glad you had a better experience! I know you are happy to be home. Best wishes for your continued recovery!
 
Quick update: John’s getting a little stronger each day. Now 10 days out of surgery, he’s walking a mile or more daily and working diligently with the spirometer to get back to his pre-surgery lung capacity. His resting heart rate is running a little high (upper 80s/low 90s) but overall he says he feels like he’s turned a corner. My biggest challenge is trying to keep him from overdoing it!
 
My biggest challenge is trying to keep him from overdoing it!
dig out pictures of redo-sternotomies done because the patient over did it and the sternum fractured along the "knitting line"

then describe that they respread the ribs (no need to stop the heart, "shave the sides" and jam them back together again. Also mention possibility of infection in that area.

I can see if my friends family took pictures (it was film back then) of their father who exactly suffered this (and then a 3rd surgery on the sternum because he got MSRA)

8 weeks of care and a return to a normal life. Seems like a good trade to me (all three times I've done it).

PS: this isn't common btw ... but a good patient should be ... patient!
 
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Quick update: John’s getting a little stronger each day. Now 10 days out of surgery, he’s walking a mile or more daily and working diligently with the spirometer to get back to his pre-surgery lung capacity. His resting heart rate is running a little high (upper 80s/low 90s) but overall he says he feels like he’s turned a corner. My biggest challenge is trying to keep him from overdoing it!
I’m 12 days out but am taking it much slower. I still get very tired. My resting heart rate has been low 70’s. I just started home Pt today so slowly getting back my endurance is the goal. I’m glad he’s feeling so good, but yes, try and remind him to be patient. It’s just for a short time and then he’ll be able to do normal activities.
 
I’m 12 days out but am taking it much slower. I still get very tired. My resting heart rate has been low 70’s. I just started home Pt today so slowly getting back my endurance is the goal. I’m glad he’s feeling so good, but yes, try and remind him to be patient. It’s just for a short time and then he’ll be able to do normal activities.
I was disconcerted to find how little energy I had after my surgery. I had thought that, being fit and relatively young (53), I would bounce back quickly. Instead, at first my daily schedule started out something like this:

  • get up, take pills, eat breakfast
  • rest
  • go for ten-minute walk
  • rest
  • shower (using shower seat)
  • rest...

Also, the progress of recovery wasn't linear, but much more like two steps forward and one step back. Fortunately I did get back to 100% of my previous energy level, but that took about six months total.

As for resting pulse, mine was high (80s-90s) for months but decreased gradually to the low 60s.
 
I was disconcerted to find how little energy I had after my surgery. I had thought that, being fit and relatively young (53), I would bounce back quickly. Instead, at first my daily schedule started out something like this:

  • get up, take pills, eat breakfast
  • rest
  • go for ten-minute walk
  • rest
  • shower (using shower seat)
  • rest...

Also, the progress of recovery wasn't linear, but much more like two steps forward and one step back. Fortunately I did get back to 100% of my previous energy level, but that took about six months total.

As for resting pulse, mine was high (80s-90s) for months but decreased gradually to the low 60s.
Thanks for sharing! I totally get that!! I’m used to running so my walks around my house feeling like a workout are quite humbling. 😆 I am waiting patiently to get back to normal.
 
I was disconcerted to find how little energy I had after my surgery. I had thought that, being fit and relatively young (53), I would bounce back quickly. Instead, at first my daily schedule started out something like this:

  • get up, take pills, eat breakfast
  • rest
  • go for ten-minute walk
  • rest
  • shower (using shower seat)
  • rest...

Also, the progress of recovery wasn't linear, but much more like two steps forward and one step back. Fortunately I did get back to 100% of my previous energy level, but that took about six months total.

As for resting pulse, mine was high (80s-90s) for months but decreased gradually to the low 60s.
It takes time to heal, for the chest was cut open and cause the muscles their own trauma. Also the lungs where working harder and you did not notice, no fault of your own. We never know how bad we were until we are done with surgery and the healing begins. We do not even notice our skin color before surgery. You did very well in recovery, taking it slowly and building it up. Congrats.
 

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