Hello!
My fiance has had 3 OHS in less than 10 months. Scary to think about, but he came through just fine!
So, to answer some of you questions from an observatory place...
The bloating and paleness lasted (real noticeably) for the first, mmmm, maybe 12 hours. Mathias was awake for approximately 6 of those. Perhaps more overwhelming for visitors and support than it is for the patient. Only thing about the bloating and paleness for Mathias specifically was that they had a harder time placing an IV they needed to. And that was only round one. The other surgeries there wasnt any trouble.
There are tubes and lines hanging off of you in CICU. For Mathias, it really wasnt something he noticed so much as to be very bothered. Yes, they were there. No, they weren't especially "fun". He had one to two tubes/lines removed each day. It moves quickly and before you know it all you have left "hanging off" of you is a single IV, and it's used for emergency type purposes after too long. Mathias had his taped and wrapped up, but still attached after day 3 or so. They keep one in until discharge.
His first go round, he was in the intensive ICU (cleveland clinic) for 48 hours due to plural effusion that was stubborn. He was unable to eat any solids, and only had small amounts of liquids while there. He also had a large air bubble in his stomach for the first 24 hours that caused vomiting and anorexia. Once they discovered this, medication was administered and he felt much better. After being moved to "step down", he could eat whatever he wanted if his appetite was in gear. He had trouble with nutrition, mainly because he wanted a home cooked meal and not hospital food, not because he was nauseated. At day 3 after the third OHS, I brought him scrambled eggs from home.
Mathias had very little in the way of heart failure symptoms, so to be honest, he didnt feel better for quite a while after the first surgery. He hurt and didnt know why he put himself through it all. About 4-8 weeks after OHS, he noticed how much more comfortable he was. He didnt have his pinching chest pain, he didnt have shortness of breath (aside from being worn out from pushing himself on his walks)...he just felt different. "Better" wasnt quite the right word until later in recovery, but he felt able. Not sure if that makes sense.
He was administered insulin for 2 days after the first surgery, 2 days after the second, and 4 days after the third. It bothered him mentally because he'd never needed it before, but it was needed...maybe because he was naughty about eating what he should have. You can refuse it if it bugs you that much, but it didnt have any ill effects on Mathias.
Going home was overwhelming all three times. Not sure if the overwhelming feeling was negative. First time, we were released from CC into our hotel (we are from the west coast), so that wasnt very comfortable. Second time it was to our home, but he was more painful than round one (found out it was because of pericardial effusion, lead to cardiac tamponade so the pain made sense) and the third time was emotional after all we had been through, we were just happy to be home. The familiarity of your own place is helpful. Helps with sleep and relaxation.
He didnt sleep in bed with me until 6 weeks post op. He slept in a zero gravity chair, similar to a recliner. It was much more comfortable for him than laying flat, and didnt take much effort for him to sit himself upright and get up to use the bathroom or get some water etc. This was also helpful from a caretaker point of view because I needed sleep in order to be alert enough to care for him during the day, and, eventually, to be able to go to work. In addition, bathroom habits were normal for him. He was able to do it all himself. The occupational/physical therapy go through ways to guard your sternum while executing toilet hygiene. Ended up being no big deal for him all three times. They also go over with you how to get up from laying flat, like on a bed. They dont expect you to be able to know how to ambulate and maneuver yourself after the surgery. They are very persistent about teaching you the correct ways to protect your sternum while moving about. One amazing nurse reminded us...after your heart surgery is complete, your heart is fixed. It's your sternum you have to focus on healing.
We dont have stairs, so I cant comment on that much other than when we did encounter stairs, he took it slow and did just fine.
The only thing Mathias would tell you would be to stay away from thick drinks (they typically offer protein shakes in the hospital) because they caused him to have coughing fits which are very uncomfortable after OHS. Also, dont be afraid to ask if you feel like the pain you are feeling is unusual, or doesnt get better with pain medication...ignoring the unusual pain landed him back in the hospital for round three...it likely could have been prevented if he was upfront about what he was feeling. We also asked for muscle relaxers for pain management...the pain killers werent helpful for him (he does have a high tolerance to most painkillers due to many other orthopedic surgeries in his history, so perhaps that's why the pain meds didnt work well).
I think I covered most of your questions. I apologize that it is from a caretaker point of view...perhaps it's not that useful for you.
Lots of positivity is being sent your way, keep asking questions!
Jill