I never posted in here, but my story is basically endocarditis on a bicuspid leaflet at age 30. Moderate regurgitation, multiple perforations on the valve.
I was susprised how long I had to wait. I was in the hospital for almost two weeks awaiting surgery. Because they were afraid the vegetation on my valve might break off and kill me, they had to keep me in there. I had all kinds of roommates. A guy with a subdural hematoma who kept apologizing in his dreams and pissing on the floor, a guy with kidney failure clearly at the end of his life, an alcoholic with neuropathy to whom one nurse said quite rudely "you need to stop drinking!," and, I kid you not, a guy who came into the hospital with a laptop, keyboard, mouse and headphones, and played video games while popping percocets. Nurses kept telling him he needed to take a walk to help his lungs out... he wasn't having any of it.
I remember after surgery one nurse regaling us with stories of OHS patients who saw all sorts of stuff while they were under. Family members, the surgeon's shoes, etc. Last thing I remember is the surgeon putting his hand on my shoulder, saying "I'm going to take care of you." Funny now to think if he'd said it in a thick Jersey accent, I might have been frightened instead of moved to tears...
I remember waking up for the first time. The nurse shouting at me "we need you to sit up and breathe!" I wasn't having it!
I think I'll always remember the feeling of the chest tubes coming out. A tightness and a feeling like rubbing against the lining of an above-ground pool...
I'll remember my girlfriend at the time bringing me a concrete milkshake. Heaven! Also how overwhelmed she was. Some of your loved ones may cope just fine, and others may have panic attacks. I personally was so god damn grateful to have made it out to the other side that I was willing to handle any indignity, including a nurse sticking a suppository up my ass when I couldn't move my bowels.
And how kind so many of the nurses were! One who was exceptionally nice told me after the surgery that it had been "fifty-fifty" -- which wasn't true, of course. I think English wasn't her first language and so she understood it to me "generally dangerous" rather than a 50% chance of killing me! The surgeon himself had promised a 1% chance of death, and then when he saw the look on my face, pared his estimate down to "less than 1%."
‘…until I’m better than ever.” I am a few months past my 1 year anniversary. I anticipated feeling a boost considering the description of my defective valve which was replaced. Once I recovered from the surgery and being out of work action I was left feeling the same way I felt before the surgery. It was as though I gained nothing back and the effects / benefits of the procedure were not reflected in my energy or stamina. Then last month I elevated to a new level of recovery. I am not where I was before the symptoms appeared leading to surgery but I am closer and am in a state which I am energized. Energy plays a huge role in motivation. I have been active my whole life. I was up hours before anyone in the family as a kid. Not having energy I started to think I was getting lazy, I did not have the energy to get inspired to take on everything that I wanted and needed to do. Things happened to me that did not fit into the logic I had outlined. I was not the example I expected to be, for instance I was in the hospital an atypical 12 days while I expected to be one who would be released earlier than average. I do not think it is a good idea to believe you will be better than ever as a result of whatever is done via OHS. I started researching other patient experiences and found that it does not fit an auto repair analogy where you repair and replace parts then end up good as new. Sometimes you just extend the life of the car rather than regain the energy of youth. Recovery takes much longer than I had thought. Gaining or regaining this recent ground something inside took a long time to heal or adapt to the new valve or something. I had returned to my physically active job a month early and was as active as ever immediately and have been ever since. But I struggled with less stamina and energy. It was over a year of this constant pace then suddenly I made a leap forward rather than backward. But it should not have unfolded like this according to logic. So expectations of better than ever can be unrealistic. Your body has its own say in the matter. Best wishes!
I agree about pacing yourself above. I am healthy again, with lots of energy when I'm not exercising. Exercising 3 or 4 times a week, running around with kids a decade younger than me (I'm 31 now)... I start to wear down. But I'm much more forgiving and patient with myself these days. I take it easy when it warrants. I try to stuff myself with healthy food when I can. I stay away from alcohol for the most part. I accept the fact, basically, that there will be days when I'm frightened, thinking about strokes and bleeding events, or tired and wiped from going too hard at pickup basketball, but that basically I am so ******* lucky not to have born 100 years earlier, when the doctor might have showed up at my bedside, explained he thought I had a heart infection, and that he had a surgery that he'd like to try... I might have asked at that juncture, "will it work?" and like Tobias in Arrested Development, he might have said "it hasn't worked yet for anyone... but it might work for us!"
