Thank you, all, for following my progress here, or just for following the life of an FH and heart patient, as well. It’s really humbling to see that some of you find this helpful and that some of you are just keeping a hand on my pulse. Thank you, all.
I wish I had another huge milestone to post about, but for the past week or so, the days have gone pretty much in similar fashion: in the morning, we wake, we eat, my husband drives me to rehab, I do my treadmill walk (every day is longer and faster than the one before).
Some days, we have a couple of other doctors’ appointments or classes to go to, then we get home. We eat, I sometimes nap (I try not to, but some days are harder than others), and then we putz around the house. Well, he does and my mom, I mostly read, surf the net till I feel brain dead and chat with my cat a lot.
I have seen my cardiologist several times so far, and he asks me every time when we can start the PCSK9 shots, to really make a dent in the cholesterol numbers. So, with FH still very much in the picture (it’s mostly what caused this whole surgery in the first place), he’s definitely keeping my focus steady on that main root cause. I love him for it, but I am not ready to think about anything else but recovering and feeling like a functional human again. We did talk some this last time about the shot, the results, and how it would affect the damage already done in my body - this is subject for another post, but things seem to look promising.
I sometimes (weather permitting and my own energy allowing) take a walk around the block which always makes me feel like a marathon winner. You gotta understand, if you are me and have been looking in the mirror naked (pardon the visual) for the past 3 weeks, and are seeing the countless scars and bruises and cuts and swollen spots, and blisters from band aids, and broken veins, not to mention the stuff you DON’T see, that they did on the inside of my body (the artificial stuff they implanted, the stitches for every one of those, the new connections to allow my blood to flow, the artery pulled out of my chest, the vein pulled out of my calf) and so forth ... you would feel like a marathon winner, too, after walking a mile in 30 minutes!!
Some days, every day, actually, I wonder at the miracle of life and willingness to live we have in us, and I marvel that I am still breathing and walking up straight. Big miracle. Very grateful over here.
Today was supposed to be the day where they “graduated” me at rehab, from just cardio walking (treadmill) to strength training - where they make you lift weights and pull at tight bands to make your upper body strong. I filled out an evaluation yesterday to see if my surgeon will approve the graduation and the papers were not back from the surgeon today. Anywhoo - the nurse decided I was ready for the strength training, so she sent me to do it anyway. Well, the strength trainer definitely gave up on me and very clearly said I was not ready for this, after a couple of exercises where I was screaming (figuratively) in pain from my chest killing me.
So, this is what’s odd: after OHS, your whole body will hurt like hell. Your ribs and your back hurt the worst for me right after surgery (they told me, “the tubes in your chest” are to blame), but comparing to that pain, the chest (where the surgery is!) didn’t hurt too badly. Well, NOW, almost a month later, tube free, the chest is what’s killing me. And my upper back.
The strength training is supposed to restore your upper body strength - so, that’s not gonna happen till my incision and my chest plates will stop screaming. They can be tight, but they can’t hurt. And I still take OTC pain killers, so ... they should not make me want to cry when I pull an elastic band from the floor to the shoulder.
Some days are good days - I have energy and I can work through small chores, with lots of breaks, around the house. Some days, all I want to do is lay down and sleep, in knots of pain all over my body. I know that’s not allowed (day sleeping), because then, at night, I suffer.
And that brings me to my least favorite subject, really: almost a month after surgery, I still have not figured out a way to sleep at night (just a position, or a seating arrangement that is comfortable). Every morning, I wake up more beat up and sore than ever! I asked at the clinic, and everyone shrugs: you’re supposed to find your own sweet spot for sleeping, they say, but I have not found mine yet. I am not a back sleeper and to sleep on my back the whole night, without moving is killing me.
So, in a nutshell, what can you expect after open heart surgery, and after going home? Here’s a quick and dirty list:
- lots of drug balancing - I am off the narcotics, but still going in weekly for balancing out the coumadin
- lots of sleep weirdness and trying to find out the “new comfy sleep position” that will get you some rest
- lots of pains, aches, and lots of just “discomfort” - you will need to know the difference and qualify it for the medical staff: they want to know exactly what hurts vs what is just tight, or just “in the way” - you will get to know your body very intimately
- along the same lines: you might have some numbness somewhere, because this surgery will damage nerves (mine is left arm and left leg and chest); it’s different for everyone; you’ll learn to use less of your body for a while, because of this
- weird stuff will happen, almost surely: I have had hallucinations and double visions, along with light headedness
- have someone with you at all times - putting on your shoes might be impossible, if you wear something with laces
- go to rehab often and have patience - on my first session (8 minutes on treadmill) I never thought I’d walk on a treadmill for half an hour with an open sternum, but here I am. Your body will come back, slowly.
- lots of doctors’ appointments (surgeon, cardiologist, labs) - they keep making sure what they did actually works on the inside; there is still some things as “silent killers” even after OHS
- if you can focus, have some good entertainment around you - books, TV, Netflix, easy crafts, whatever - you WILL be bored when you’re awake and finally starting to make sense of your world
- nap, but shortly
- food might not be your friend for a while - this takes different forms, for all of us; for me: it ALL tastes wrong and for the most part, it all makes me want to throw up. I lost 8 lbs in less than 3 weeks, and at around 100 lbs that’s a lot to be losing in a short time. Force yourself to eat, though (duh!, right?!). My appetite and joy for food is not back yet, at almost a month.
- stay in touch with your support group - they will be the fuel you need to push you forward.
- if you have a loyal pet, all the better - they know what’s going on and will give you a reason to wake up in the morning as well as cheer you on.
Much health and thank you, to all of you.
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