Wednesday, December 16, 2015

And here we are again

So I didn't mean to up and walk out on y'all for a couple of months but there it is. Floundered a bit after getting out of the hospital, was very depressed for a couple of weeks and extremely anxious. Towards the end of that my back for no particular reason, became spontaneously wankered, and then when that finally cleared up (mostly) I just started getting caught up on living my life and since my surgeon didn't return my calls for a couple of weeks I sort of let myself forget about it for a bit. I finally had my cardiologist call him personally and then he finally got back to me. We are looking at a mid january surgery so in hospital speak I think that means some time in February. So Xmas in 10 days then I'm off to ring in the New Year in Manhattan (in the safety of a friends cozy apartment, eff that Times Square fuckery, even if I had the energy for something like that, nothing about being crammed into a crowd with a bunch of drunk, potentially vomity strangers is the least bit compelling to me. No, I will be sipping a polite cocktail with one of my oldest friends, a cat, and a corgi. Despite not going out I still plan to wear sequins. Because I like sparkles.

So thats where I am now. I'm not gonna lie, I probably won't post much until I have a date, but just wanted to check in and wish everyone a Happy Festivus.

Monday, October 26, 2015

Not Hospital Food

I'm feeling much better and less like a mental bitch. I've been researching how I can improve my diet so that it can better serve my body. Also, as was so delicately mentioned by the Liver People at the hospital, I'm getting fat. So while I wait for my surgery I'm going to try and up my diet game. I'm a good cook and try to eat well but sometimes its so easy to get lazy and also, stress eating,  and of course, sometimes you just want to eat cheese dip from a jar and watch the world burn.

So the other day, having been poking around the internets in search of what I can eat to benefit my liver, I discovered that Beets and Walnuts are good for liver health. Over the summer I became enamored of beets after a lifetime of hating them (due in no small part to a year of school dinners in the UK that seemed to come with a never ending supply of grotesque tinned beets. Every. Goddamned. Day) I learned to trust them again after a friends husband produced them in roasted form at a dinner party, then over the summer I began to experiment myself, and found that a beet salad is *divine*. This is what I came up with after reading a bunch of other recipes. I don't measure anything when I'm making food so all measurements are a guess. It's not baking, so adjust to suit your own tastes.

1 large golden beet (or any kind of beet really - if they're small cook a few)
1 medium sized orange
1 small shallot
Handful of Arugula (about 1 1/2 cups)
Goat Cheese (I used about a 1/2 inch slice)
About 6 walnut halves (or if you have chopped ones maybe about 1 heaping tbs)
1 tbs extra virgin olive oil
2 tsp white vinegar
1/4 tsp sugar
pinch of kosher salt
fresh ground pepper
1/2 tsp of dijon mustard

I took the beets, peeled them, and chopped them into quarters (go for half cut if they're small)
put in a foil lined pie tin, drizzled with olive oil and salt and pepper, covered with foil (tightly) and put in a 400 degree oven for about an hour and 15 minutes (I cooked several large beets at once to have leftovers on hand, if you're only doing a small amount, or cooking smaller beets, I would start checking them at 30 minutes). Let cool

I supremed the orange (don't know how to supreme an orange? look here) and squeezed the remainders of remaining juice into a bowl for the vinaigrette.

To the orange juice add salt, pepper, sugar, extra virgin olive oil, vinegar and dijon mustard, give it a whisk.

Thinly slice the shallot, and the beets, put them in a bowl with the arugula, and toss with the vinaigrette

Plate it, and sprinkle over the walnuts and goat cheese. SO. DELICIOUS.

Saturday, October 24, 2015


Been home for a few days now. I had to take a minute, because you know? That was some BULLSHIT.

Disclaimer:  I AM grateful the decision was made to step back and do more research rather than steaming in there all "Damn the liver! Full speed ahead! As with last year I can't say enough about how awesome the nursing staff was.

That said.

What would have been really super would be if before the decision to cancel was made, I hadn't first gone through all the fun personal indignities detailed here, or the self injecting twice a day, or the month and a half of mentally steeling myself to undergo this entire fucking process, or if it hadn't followed with 8 days a prisoner of my INR tethered to a heparin drip, in a dreary hospital room.

If you're in the hospital with no pressing issues (i.e.: I still need the surgery but feel no worse than I did for the past year) (ie: not floating on a happy Dilaudid cloud with a massive chest wound to distract me) 8 days of restless boredom, punctuated with multiple daily blood draws, hateful bleating alarms on your overly sensitive heparin drip, in an uncomfortable bed made for someone 6 inches shorter than you, and people waking you up in the dead of night to check vitals who occasionally have the audacity to ask (seriously mind you) if you think you would mind getting out of bed to be weighed. Yes I would mind, yes I would fucking mind a lot. (I don't feel bad about being a dick about that because in my opinion that is a completely unreasonable request) - It does your head in a bit. It's similar to the treatment you get when being inducted to a cult - sleep deprivation, horrible food, unfamiliar environment. I'm not suggesting nefarious intent on the part of the hospital, I'm just saying after several days of this you find yourself feeling somewhat dazed, and emotionally fragile, with a splash of volatile. That thing where you're having an all out ugly cry for NO REAL REASON YOU CAN SEE (IN FRONT OF ANOTHER PERSON) and your inner voice is screaming at you to shut the fuck up and stop acting like such a fucking baby but you can't because YOU DON'T KNOW WHY LEAVE ME ALONE STOP FUCKING TOUCHING ME. Still moving past all that  At least today when I woke up I knew what day it was without having to check, so - progress!

So for now the surgery *is* happening but I can't currently say *when*, so that's not annoying at all. Currently I'm electing not to think about it because I have no reason to. Because I have zero control over it right now, and if I keep thinking about how much that pisses me off I will go to bed and not come out until next year.


Monday, October 19, 2015

I think I live here now.

It's a whole week I've been here. To what end? I don't know. I spoke with liver doctor regarding the findings from the liver CT I had the other day and he seemed to feel that my liver is fine and would be fine through surgery. Supposedly these guys are some of the top liver people in the country and if they think my liver is fine, this is good. Maybe that means I can just go ahead with my surgery like they planned before rather than as before when they were thought there possibly might be a problem that there would have to be a new approach and perhaps instead of grafting in a dacron tube to replace the damaged aorta they would instead try and fix the aneurysm with stents, which honestly I am just not stoked about.  What little I read about stents I don't like the sound of. So anyway hopefully tomorrow my surgeon will come and talk to me and tell me what he thinks now that we have all this new liver information and also hopefully my INR will be back at the level that they will let me get the fuck out of here because holy God in heaven you know it's really boring is being in a hospital stone fucking sober I mean they give me Xanax but that really doesn't help much and I'm just bored... I'm really bored I can't concentrate on reading I can't really do anything I have watched more  Law & Order in the last week that I have all year and I'm ready to go home that said if tomorrow my surgeon came in and said hey were taking you back off the Coumadin were putting it back on the heparin driving it down we're doing the surgery this week I would be OK with that too I just want a timeline. I want to know when I can actually officially start planning my life again because right now I have no fucking idea what's happening and I am fucking tired of it. 
Taking my heparin drip for walkies. 

This is becoming tedious

Still a hostage of my INR. Not optimistic that I'll get sprung tomorrow either. Hoping that I'll at least learn more about my liver and its bullshit shenanigans. I just want to get on with it. 

Friday, October 16, 2015

Holding pattern

So I am still in the hospital. Yesterday I had a CT scan for my liver and met with the liver department people. They really didn't seem that concerned, I have elevated protein levels or something like that, but whatever it is, it's out of the ordinary and they want to make sure what they're dealing with before I am cleared for surgery. Surgeon plans to use a technique called Deep Hyperthermic Circulatory Arrest which basically means I'll be an actual zombie after, so that's pretty cool, but they need to make sure that this process will not kill my liver therefore trading one problem for another. So as it stands, I am back on Coumadin along with Heparin to draw up my INR numbers and I will be sent home on Sunday or Monday. Then, after they look at all the tests on my liver and possibly do a liver biopsy, then and only then will they either reschedule my surgery or make a new plan. Today my INR was at 1.0, needs to be 1.6 or higher before I can leave. Hoping that will be tomorrow. I miss my cats and not being tethered to this fucking contraption.

Thursday, October 15, 2015

I. Can't. Even.

So after a mostly sleepless night I was pulled out of bed at 4:30 in the morning to get ready for the operation. I took my Silkwood shower I scraped under my nails, I put the disgusting Vaseline crap up my nose, I gargled with what tasted like minty battery acid. I went down to pre-op I got to be inspected and looked at and poked at. I was given an IV catheter in my wrist, that shit HURTS.  Then and ONLY then did they cancel my surgery because my liver levels are fucked up. Why? No idea. So now I am still in the hospital I'm still on heparin I have no fucking idea when I'm getting my surgery.  I may get sent home I may not I may have my surgery tomorrow I may have my surgery a month from now. Imagine if you wIll how much fucking fun that all is. I would love to try and make this sort of funny ha ha somehow but frankly I'm tired I'm pissed off I do not have enough fucking drugs in my system and I just am OVER. IT. 

Wednesday, October 14, 2015

Wherein I am the whiniest asshole in whinytown

All was going according to plan. i got my Xanax and my ambien and floated off into sleepy town. Then at midnight they woke me up to check vitals, then restless legs kicked in, then some future rocket scientist of America starts running a goddam floor buffer outside in the hall. It is at this point my heparin drip machine starts with its goddam beep beep beep for some phantom non existent issue, and I call the nurse to shut it up so I don't need to burn the hospital down. I tell them I need something to put me back to sleep. They ask whomever they ask. I am denied. It is at this point I burst into tears like a total asshole because I am tired but simultaneously upset, and hurty because my right hand has been stuck so many times I can barely move my pinky finger and the entire top of my hand is being encroached upon by a hideous green bruise and I am DONE and the last fucking thing I want to do is lay here awake and think all about what awaits me for the next 4 -5 hours until they wake me for the parade of indignity that is pre-op. Fortunately nurse takes pity on me, calls the dispenser of the drugs again, and gets me a Xanax which I doubt will put me back to sleep but at least I will relax as I lay here and stare at the ceiling until dawn. So for all you folks telling me I'm brave, nope, I'm just another big whiny baby like he rest of the assholes. 

Tuesday, October 13, 2015

And here we go.

Greetings from my luxe accommodations!
Took all day but a bed finally opened up. So far everyone has been lovely, even when performing acts that might be a a little unpleasant. Urine sample via catheter (not nice) nose and rectal swabs (also not nice) EKG (easy peasy had a million of em) BP, pulse ox or whatever that fingertip clippy thing is, IV port inserted, and soon they will be in with my heparin drip, and hopefully my Xanax and ambien. While I don't actually feel anxious, I keep almost starting to cry for no reason and I REFUSE to be irrational crying girl. So demanding all the drugs. 
Heart monitor
Swabs that went places they were not welcome
Cool goth sex light for finding my veins that were hard to find. 
IV port hookup 
Heparin drip thingy that's making annoying clicky noises. 

Well my drugs are in my belly, So i guess I'm all in now! Let the games begin. Any questions? Feel free. 

Monday, October 12, 2015


It's my own fault, I should have called cardiac surgery as soon as I got home from the hospital Friday, but I was grouchy and hurty and generally wanting nothing but to sink into the embrace of my couch nest and have a little pity party. So I didn't call. They didn't call me. Now it's Columbus Day and so nobody is home at Cardiac Surgery and while I was told they'd be in touch and I'd probably check in Tuesday, do a day on heparin, then surgery Thursday, that seems increasingly unlikely since Tuesday is tomorrow and I haven't heard a word, and honestly it's at the point where I'm ready to go into petulant foot stomping 5year old mode. So will it be postponed to next week? Will they call tomorrow and tell me to come in tomorrow night? I DONT FUCKING KNOW. Stay tuned. 

Sunday, October 11, 2015

Sulk sulk

Sexy amirite? This is me doped up after angiogram. 
Not doped up enough, mind you, but after the third serving of whatever it was they gave me I figured if I asked for any more I'd be accused of drug seeking behavior. I was told it would relax me and make me forget the entire procedure. I was lied to. Because,  NO IT FUCKING DIDNT! I remember all of it. None of it was nice. 

It's the feeling of things moving around in my tubes that troubles me. It's a horrible feeling. Sometimes painful, always ghastly. The first angiogram I had was at 23 I had had a stroke and was in the hospital. No details were really given to me prior to going in to have it and it was a painful traumatic experience, so really even if they evolved the procedure to the point where it consists of nothing more than being nuzzled by baby unicorns or buried under a giant waggy pile of happy Labrador puppies, still. No.  Fuck angiograms. For ever and ever. 

So previously I've said that this isn't that bad. It really isn't, and that's easy to see once you're on the other side of it, but there are days and experiences like this as you go through it, that are tiring and painful and dehumanizing, and just plain suck. You feel battered, and vulnerable, and you just want to get on the road and drive away forever. Sorry Buttercup, you have to suck it the fuck up and get through it. There are lots of things left to do, and your heart trying to kill you can really get in your way. Oh btw, I washed my hair and braided it wet before going in,  so that last picture is the dye stain I left on the pillow. I'm sure it's seen worse. 
Add caption

Thursday, October 8, 2015

Glitter therapy (as the beachball spins)

Having FINALLY dispensed with all photography obligations (because if you give me more time to procrastinate, I WILL TAKE IT) today I went to my studio and played with glitter paint. Because shiny things are distracting, and I fucking love glitter. I'll be using half of this vintage plastic model heart (a vintage drug rep model) in a sculptural piece I'm working on (I'm actually working on about 4 pieces but this is the one I'm most excited about at the moment). There's glitter AND mirror tile involved. So it's gonna be pretty awesome. Hoping to get in more studio time before surgery, whenever that's happening, I'm hopeful to have an answer to that question after tomorrow's fun. 

Tomorrow morning I get to haul my ass to the hospital at the asscrack of dawn for an angiogram. So that will be massive fun. They told me I'll need a ride, I'm assuming that means they are going in through the femoral artery and not the wrist, which was what happened last year, and I was able to drive myself since they just bound up my wrist. I also wasn't yet on blood thinners, which may or may not make a difference in their approach, no idea. Speaking of, giving myself the Lovenox shots isn't so bad, but my stomach is starting to look like I was assaulted with a hammer (tres Sexy, oui?) Also, since I'm off Warfarin at the moment I'm convinced I will have a stroke any second now, so that's been nice. Have you met my new best friend? Say hi, Xanax! 

This will be my 4th time at the Angiogram rodeo, I detest these procedures, they hurt (this may not be the case for everyone, they tell you as the dye is injected that you may "feel slight warmth spreading in your chest" In my particular case, "slight spreading warmth" actually translates to "searing burning pain in conjunction with heart feeling like it may explode") and I feel icky afterwards. I'm hopeful that the need for a ride also implies they will give me some kind of sedative, which would make the post procedure laying on my back for 5 hours, less tedious, as well as silencing my inner voice that keeps telling me they will find something awful, and have to admit me immediately. Maybe tho, JUST MAYBE they will give me some nice calming drugs, go in through my wrist, and I'll be home by noon. My inner voice feels that is highly unlikely. My inner voice is a dick.

It's possible I may get a little whiny in the next few days. I HATE when I'm whiny. I'm just so over this whole thing and it hasn't even begun yet. I know no matter how shitty and beat up I feel after the surgery, I will be glad to get on the other side of it, but in the meantime I'm stressed out and anxious and my god I wish my Mother was here. 

Tuesday, October 6, 2015

That thing on a Mac where the little beachball spins and spins and spins...

That feels like my life right now.  Hurry up and wait.

It's maddening.

At least I'm getting my house clean in the meantime. There's no cleaning like stress cleaning.

But enough about that.
About 2-3 weeks post op

SO you have heart surgery and you're left with this big fuck off scar on your chest that you have to go out in the world with. There are two approaches to this.

1. High necks, and scarves, cover that bitch up, hate it, think it's ugly, let it make you unhappy, ignore the fact that it's the reason you get to stay alive, agonize over WHAT PEOPLE WILL THINK.

2. Wear it. Wear it loud, wear it proud. Get a kickass bra and push your tits up around it. Look you had another person SAW OPEN YOUR RIBCAGE AND PHYSICALLY HANDLE YOUR HEART. That's pretty bad ass. Think about it, we've all dated that that person who turns into the biggest whiny baby the second they get a head cold, or the one who gets a wrist fracture and acts like they need to go on disability or something. Meanwhile you've had your guts stripped and reassembled. Bitch please.

Guess what my suggested approach to this is. Directly after surgery I *did* cover it up as I was healing when I was out and about,  point blank, it looked pretty gnarly, and I just didn't want to look at it. Also, going out with an exposed wound is a gateway to potential infection - it's almost guaranteed if you go out with your incision hanging out you'll inevitably get thrown up on, shit on by a bird, hit in the chest with a piece of raw pork...You never think those things will happen to you, UNTIL THEY DO.  Sure I've never been hit in the chest with a piece of raw pork. YET. The second you let your guard down tho, it's raining pork. Guaranteed. Once it was no longer scabby and angry looking however, I was all about tank tops and v-necks. Summer was on the way and when you're on the mend from OHS, comfort is key and I'm not comfortable in binding necklines. Also, new scar tissue is pretty sensitive, the less irritation the better (pro-tip: once you're driving again, wrap your seatbelt in something soft, I just used an old t`shirt - that belt fabric will feel like its trying to saw you in half if its resting on your scar tissue).

You might find that some people (strangers) feel it's their business to ask you about your scar. You don't need to tell them. Telling people you've had OHS is weird enough when it's your friends & family but then with strangers, well, you're under no obligation to tell anyone anything about your health. SO just in case this happens to you, and you're not comfortable telling your story, here is the appropriate response:

Fuck. Off.

It takes a while to get used to this new feature of your body's landscape and there are going to be times when it gets you down. Healing isn't just the body, it's also the mind. I think any major illness and or surgery can really do your head in, you don't just wander through unscathed. Something I found helped me was finding others out there who had been through  the same experience - the hashtags #openheartsurgery #zipperclub and #scarsarebeautiful on Twitter, Facebook, or Instagram with connect you with lots of folks who are going or did go through similar surgeries. Having my little network was great for when I had questions that weren't really doctor questions, but things that only those who have been through it know, like after your sternum is almost healed completely is it normal for it to ache like a bastard when the weather changes?* Apparently with some folks, yes.

So I have been struggling to end this post for what feels like hours and can't come up with a good wrap up.  So I'm just going to go. I know, it's awkward right? Oh well, can't do anything about that now.

*You know your body, if you even THINK it's your heart hurting, get it looked at, but you can tell the difference between bone achy and heart muscle complaining achy, but again, not sure? DOCTOR.

Saturday, October 3, 2015

Plot twist!

So when I spoke with my surgeon initially about this surgery he felt I didn't need to get another angiogram beforehand. However, he called me thursday morning to tell me that after consulting with my cardiologist, and a few other cardiac colleagues it's been decided that I DO need to have one,which very much throws a wrench into the timeline. Soonest I can get it is next friday, so no surgery next week, but possibly (hopefully) the week after, as I'll be taken off my Warfarin, and put on Lovenox, which I have to inject myself with daily, which I am SO NOT COOL WITH. So Monday I get to start with the Lovenox, Angiogram on friday, and *hopefully* surgery the week after....I really want to get this over with.

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.