Wednesday, September 30, 2015

Bags packed, ready for takeoff.

When you're going to the hospital, particularly for the first time, particularly for any kind of major surgery, you tend to be preoccupied by the fact that another human being is going to be sawing you open and twiddling with your insides more than thinking *what should I bring?*

I'm not suggesting you pack a trunk, a small overnight bag will more than suffice, and it would be something someone has to bring to you after the surgery - but there will possibly be a few days there where you can't leave yet, but you're not so out of it that you can't be bored off your tits and generally restless (between your naps - the naps would be the best thing about a hospital stay if there wasn't someone coming and waking you up all the time)

Comfortable clothes. Once you're no longer hooked up to machines, there's really no reason you should keep wearing a soul-killing-itchy-early-nineties-pattern-having-ass-hanging-out hospital johnny. Get some nice big stretchy pants. Sweatpants, yoga pants, dorm pants, pajama pants - non binding and roomy is the idea. And a nice big t-shirt, and a nice big hoodie. Gigantic, like you're wearing a blanket. You don't want things that cling as they can irritate, also, lots of people will want to check your incision, much easier to pull up a giant t-shirt than a tight one (and get used to people seeing your tits. there is no modesty in hospital-land, just pretend you're at Mardi-gras (sadly, hospital staff do not reward you with shiny beads). Putting on your own clothes is a big step towards feeling like you again.

Warm house socks, with the rubber soles -  make sure the tops are nice and stretchy, because you may have some swelling in your legs for a few days. They *will* give you socks. Those socks are bullshit. Bring your own, scornfully throw beige hospital socks in the corner and ignore them. It's what they deserve.

Sensible underpants. Not panties, not thongs, not cute bikini briefs. I'm talking big ugly grandma briefs. Here's why. In bed you'll be elevated, at least a little, I personally couldn't sleep flat on my back for several months post op - it hurt and it was hard to breathe comfortably. Anyway - when you're sitting in a bed all day you tend to slide down every so often, and if you're not wearing sturdy full coverage knickers, you will constantly be pulling your underwear out of your ass. It's a little thing but really, you already have enough going on. Why cause yourself more discomfort?

Hair wranglers. Headband, bandana, elastics, and a brush (I always forget a brush, every damn time) Whether your hair is long or short, you want to keep it in check  - this has nothing to do with vanity, and everything to do with not having hair in your face (which drives me batshit), and, if you have long hair, not exiting after a week looking like Medusa. My hair is very long, I will be rocking braids.

Baby wipes. I'm sure they can give you these in the hospital if you ask, but they will probably smell like disinfectant. You will want them, because after a few days with no shower you will start to feel like you just spent the weekend at The Gathering I was able to take an actual shower some time around day 5, but prior to that it's nice to be able to clean yourself up a bit. Obviously you would not use this on your incision or any IV ports - if that needs cleaning, ask a nurse.

Lip balm - my hospital was quite dry, yawning at this time is enough of an ordeal without your lips ripping open as you do it.

Hand lotion - this is another thing they will have at the hospital if you need it, but it's nice to have one in a scent you prefer. I forgot to bring some and one of my besties was kind enough to bring me one, it was lavender, and I have to say after what felt like days of nothing but hospital and disinfectant smell it was so wonderful, and soothing.

Something to read. Books - kindle or analog, magazines, whatever your thing is. Nothing too in depth, remember you're going to be on heavy narcotics, focus and concentration will not be your forte at this time. Since there can't ALWAYS be a Law and Order marathon on the telly to zone out to, like in the morning for example, when there's nothing on but insipid children's shows and even MORE insipid and intellectually insulting morning chat television (looking at YOU Kathie Lee and Hoda) you will want something to read. Maybe your hospital will have kickass wifi and you can binge watch your days away. My hospital does NOT have kickass wifi, it has "you can check your Facebook and twitter but fuck you if you think you're streaming Netflix" wifi. If you're of an arty bent, maybe a little sketchpad and a couple of pencils, or a journal to write in might be good.

Music - on your phone, on your iPod, whatever - you may at some point have to drown out the crazy bitch in the next room who thinks it's okay to scream and swear at great length at the nurses (WHICH BY THE WAY IT IS NOT) or maybe you will have to share a room with a chatty cathy, or a snorer, or a mutterer, or maybe you just need to have a little rock out in your bed to remind you this is not gonna be your entire life for the rest of forever.

I'm assuming most folks would want their phone (at least I do) but don't forget to bring a charger. Also, a long charger cord, so you don't have to be twisting around or getting up to reach an outlet (this will also come in handy when you go home). On amazon you can order a 10 foot cord. Best thing ever.

Glasses. If you're blind (like me), you'll want them, obviously. Prior to going into surgery they will more than likely tell you to give them to the person accompanying you. If you are a difficult asshole like me you won't want to do that because you feel vulnerable enough without being blind to boot. I put my daily glasses in the bag Dad would bring post op. I brought with me a pair of old glasses that are a little weak but they work enough for the situation at hand, and if they get lost somewhere between pre and post op, no big deal (they didn't lose them, but were emphatic that it COULD happen)

Travel sized shampoo and conditioner - this might just be me but I'm fussy as hell about what kind of shampoo I use and I NEED conditioner. hospitals usually give that baby shampoo that leaves your hair feeling like you washed it with dishwashing detergent. You might not want to shower at the hospital, and that is your prerogative, but if you do, the products they offer might not be as luxurious as you prefer (and by luxurious I mean not something sold in bulk to hospitals where they have to take into consideration any and all allergies and sensitivities) Another option is dry shampoo, spray in, brush out. A good option if you're not up to taking a shower, but look like you got caught in an oil slick or are ready to claw at your scalp until you hit brain. Whatever you bring, don't use it to wash any open wounds, unless the nurse says it's ok.

One thing to remember to leave at home - jewelry. I know a lot of people, myself included, have great sentimental attachment to pieces they wear every day. You can't wear anything in surgery, you don't want to lose them, and you're gonna have sausage hands for a few days at least. Leave them at home.

Another thing to leave at home is your bra. I loathe being braless - HATE IT. It's uncomfortable and I hate looking like my chest is inhabited by two puppies fighting in a bag. Last year, I got a nice stretchy non underwire not too tight bra that closed up the front to wear when I left the hospital, but it still caused pulling and one of my drainage ports got pulled open, which while by no means a serious issue, its just gross to have what looks like a little mouth on your stomach. It healed fine but took longer than the other two and led me to consider getting 2 little eyes tattooed above it. This time I'm just gonna go for a snug tank top  when I go home.

Last thing to leave at home is work. Do you get work email on your phone? Turn that shit off. Seriously. Fuck work. The hospital is no place for stressing over work or engaging with work emails, emphasize to your co-workers and boss that you are NOT AVAILABLE. I work for myself. I have let my clients know due to medical concerns I will be unavailable for several weeks. I realize not everyone has that luxury, but I have friends whose companies have zero regard for their need for rest and time to heal  - "Glad your surgery went well, if you have a second can you respond to....." NO. FUCK. THAT.

Perhaps you've been reading this and thinking "Jesus lady - it's a hospital stay not a weeks holiday" Yes, but I'm of the opinion that in times like this, when you're exhausted, and hurting, and starting to feel like some kind of lab rat, its good to remind yourself of who you are, and take care of yourself, and take whatever steps you can, however small, to getting back to being yourself. You have survived a major surgery, you are officially a badass, treat yourself with the respect you deserve.

Tuesday, September 29, 2015

I'm having my first heart surgery and I'm terrified - any tips?

Look, heart surgery is scary. It is.

Hopefully you have a medical team you are comfortable with. If you don't, you are absolutely allowed to seek a second opinion. I have every confidence in my medical team. This is paramount.

Having found a doctor you have confidence in, if your doctor tells you you need to have heart surgery, you need to do it. I'm pretty sure no surgeons are cracking chests just for funsies, a serious heart condition is no joke,  and you can't ignore it away.  Whats more scary than heart surgery? Dying. Dying or becoming so completely debilitated by your condition that you can't even walk up a small flight of steps without needing to sit down and rest, and you end up being a burden on your friends and family, who, assuming you are lucky like me and have a wonderful family and circle of friends who are there for you, will take care of you - they will do it without complaint, but do you want to do that to them? No. This is one of those scenarios where you just need to suck it up, pull on your big girl/big boy pants and get on with it.

The good news, at least in my experience (and experience may vary so don't get all mad at me if this isn't the case for you) IT'S NOT THAT BAD. Seriously. What follows is my experience, or at least how I remember it since I was FLYING on weapons grade painkillers.

Despite waking up post-op feeling like a freight train ran me over, then backed up,  my first thought was "Yay! I'm not dead!"

Then I thought "get this fucking breathing tube OUT. OF. ME"

Some time around now I also thought "Did a cat take a shit in my mouth?".

Once they removed the breathing tube (which is not a nice experience but it was over in a flash) I began asking for water. They wouldn't give it to me. Not ice chips. Not even a wet sponge. . For good reason. After anesthesia, they make you wait several hours before giving you any liquids (you won't want food, so that's a non issue. You'll want a drink tho, due to aforementioned cat shitting in your mouth) when they DID finally give me some water, despite attempting to adhere to the instructions to only take tiny sips, I still managed to vomit all over myself, which is frustrating when all you can do is push a button and call a nice ICU nurse who will smilingly clean you up because she is an angel sent from heaven and  you are a mere mortal who can barely move.

The morning after surgery when the anesthesia had all worn off I became more aware of the situation happening around me. The drainage tubes coming out of my belly like some macabre real life Geiger sculpture,  the wires connected to my heart (in case I needed a jump start) the catheter, the IV. All very sexy, and somewhat uncomfortable. Some time around now, they came in and announced that it was time to stand up. My first inclination was to tell them to go piss up a rope, that I had a HEART CONDITION and I was very very TIRED and it will HURT and NO. But with the help of a couple of nurses, and a bed that tilts you up like one of those old people recliner/ejector seats, they got me upright, and I managed to shuffle about 20 feet. While not a pleasant experience, it was nice to know that I COULD get up and walk.

The first day or so out of surgery are honestly a bit fuzzy, because they kept me doped to the gills to keep the pain at bay. I vaguely remember X-rays, and at some point I was moved out of ICU into a room in the recovery ward. Once in there, I mostly just slept, woke up, took more pain meds, and slept more. Occasionally people come in and talk to me about stuff, I had a few visitors, and then I slept more.

At some point they wanted me to start eating again. My experience is that hospital food is universally grotesque (even the ubiquitous hospital Jello. HOW do you fuck up Jello?), and since my diet was never really an issue (as far as salt/fat blood pressure/cholesterol related issues) , I had my Dad bring me stuff - I would assume that unless you're on some heavy diet restrictions, you can probably have folks bring you stuff that doesn't look like it was made by people who hate food and want it to be punished. I didn't have much of an appetite, I only wanted fruit salad (real fruit salad, not that canned crap) and pudding. Even if you don't want to eat, you have to eat. Your body needs fuel to heal itself.

As I mentioned, among the lovely things adorning my body, was a  catheter. (warning: possible TMI) The catheter was removed with the notation that if I didn't pee by 10pm, it was going back in. Having NO interest in having a catheter re-inserted, after the nurses assisted me to the throne, I sat there. I sat and sat and sat. Nothing happened. I had to pee. I WANTED to pee, but I couldn't pee. There was nothing wrong with me, I can only assume it was the pressure of a looming deadline that caused my bladder to become a shrinking violet. During my epic sit, both my legs fell asleep, to the extent I had to be hauled up off the pot by 2 nurses,  and practically carried back to my bed. Definitely one of the more glamorous high points in my life. Fortunately, I was able to finally pee just before the deadline and was able to remain untethered. By that at least, there were still the drains and wires.

The removal of the drains and wires I *think* came 2 days post op? Painless, but the feeling of the wires coming out was really unsettling. While we are aware of our hearts, and can feel our heartbeats, the feeling of something inside you actually TOUCHING your heart is truly bizarre.

Once all the tubes and wires came off it was really pretty much smooth sailing. I still slept a lot, but I could also get up on my own, and would go on walkabouts around the ward. I also was able to put on my own clothes. I brought my pajama pants and thermal shirt and fuzzy slippers which were SO much better than bullshit peekaboo hospital johnnys and those useless fucking beige socks with the grippy rubber dots on them that will inevitably work their way around to the top of your feet within five paces because they SUCK.

I was pretty much feeling ready to go home after 5 days, I missed my cats, I missed my house, I missed wifi that wasn't crap. I ended up getting sprung after 7 days, since my INR took its sweet time getting up to speed, but were it not for that I would have been home in under a week.

So thats pretty much what I recall of the experience. In the great list of awful experiences in my life, it doesn't even crack the top 5. If you're having surgery and you're scared, that's ok, but remind yourself that you're probably tougher than you think you are, you've got this.

My stupid heart is at it again.

When it comes to my health, I tend to eschew the run of the mill. Colds? Flu? Pfft. Go big or go home I say.

A week from today I will  enter the hospital for my second open heart surgery. My first surgery was less than two years ago. Needless to say I'm not pleased about this, so I'm starting this blog to give myself a place to vent and bitch about how fucking fantastic all this is, and possibly offer some insight to first timers. Also, Oxycodone fueled rambling.


  • I am sweary as fuck, so if that offends you, this is not the place for you. 
  • I am not a doctor, nor a medical professional of any kind. 
  • My opinions and experiences are my own, I'm not here to defend them to anyone, if you troll me, I will not engage, I will however block the fuck out of you.

Perhaps you have questions?

What's wrong with you? Why didn't they just fix everything the first time?

My first surgery, last April, was to replace my aortic valve. I opted for a mechanical valve since I'm only in my 40's and a bio valve would wear out, and I'd be back in to replace it in 10 years. Since that time, my aorta has begun to inflate like a party balloon, going from 3.5cm post op to about 5.5cm as of my CTscan done about 2 months ago. So this time around a large portion of my aorta is getting pulled out and replaced with a dacron tube. I'm going CYBORG, bitches!

What condition do you have that would cause this?

A question for the ages, neither my Surgeon nor my Cardiologist have any concrete explanation for what is causing the aneurism. Or the minor heart attack I had 5 years ago, or the minor stroke I had at 23. When I had the stroke I was given a diagnosis of Marfan syndrome, but my Surgeon who has seen my heart in person,  said while I do have Marfan traits,  mine is not a Marfan heart. Perhaps while they're tinkering around in there this time, a cause will reveal itself. Who knows. I'm a medical freakshow, not a doctor.

At some point I will try and gather all the medical terminology (or medical blabbity-blah as I like to call it) for my issues. For now, party balloon aorta is the best you're gonna get. If you're looking for science, go find a blog written by a doctor. I'm just here to vent, give an honest account of what heart surgery is like (again FOR ME - your experience could be completely different)

So - I will end this first blog with a final summation:

If at any point in this blog it seems I am giving medical opinions, they are opinions that relate to ME. If you have a heart condition, or think you do,  I am not here to advise you, that is what Doctors are for, and as I mentioned - I AM NOT A DOCTOR OR A MEDICAL PROFESSIONAL OF ANY KIND.