I get all the pre-op poking and touching tomorrow, my personal favourite, the trans-catheter urine sample. the abject indignity of it is unparalleled. Fortunately the last 2 times I endured this it was with an awesome nurse who makes me feel as comfortable as one can be while being defiled in this way. Hoping to go 3 for 3 and get her again tomorrow.
In other news, today I threw out most of my socks. I had a LOT of socks. They were mostly old and ratty, which didn't matter because generally if it's sock weather, I'm wearing boots so as long as there are no holes cutting off circulation in your toes, who gives a fuck? Anyway, my point of this is while my inner sock hoarder freaked the fuck out, I casually thought to myself
"If I'm not dead in 2 weeks I'll get more socks"
Look, last weeks revelation about the actual size of my aneurysm is doing my fucking head in. I've done just enough reading to be dangerous. Right now I'd equate the feeling to when you were a kid, and you've overfilled a water balloon but you think you can still make it across the lawn with it to nail your friend in the face with it. Except you only get about 3/4 the way there before the balloon bursts all over your hand. It feels like that, except happening inside you and completely out of your control. When you're a kid it's thrilling, as an adult it's a reason to play it a bit fast and loose with your Xanax prescription. Anyway, my long winded point is, you have to be comfortable with that you could die. I am. I most certainly don't WANT to and will make every effort not to do so, but, you know, shit happens. And a lot of awesome people have already died this year - AM I TO BE PART OF THE RAPTURING OF THE AWESOME!!?? #STAYTUNED
Documenting my second open heart surgery. Just my personal experience, I'm not here to give medical advice, or talk about the politics of healthcare.
Wednesday, July 27, 2016
Sunday, July 24, 2016
Schroedingers Aneurysm
This was last week. Doesn't this look nice? It was completely wonderful and everything 5 days at the beach should be.
This week: echocardiogram, a cancelled CT Scan (it was my understanding I didn't need an angiogram (havw I mentioned I DETEST Angiograms? I do) but now maybe I do need one. Anyway that story is still unfolding. I will update as information becomes available) Next week is the dentist, and then another pre-surgery touch-up.
Surgery is scheduled for Aug 8. My current feeling on the situation is dread. Not of the actual surgery, THAT really has nothing to do with me, either I die, or I wake up. when I wake up t becomes my issue. What I dread is how fucking unpleasant it all is. The lead-up, with the testing and the poking and prodding and invasive touching. The follow-up, with the exhaustion, and the general feeling of like shit. The naked vulnerability, I loathe it.
I know it gets better, I know it could be worse and I am lucky as hell. I do, I have insurance, the support of friends and family, were it not for a series of events that led me to this point, I would more than likely be dead. So I am grateful that this is happening but OH MY GOD I DON'T WANT TO.
Plot twist! (well sort of)
(well not really, its an update, more than anything)
So I had started this post the other day and then I forgot about it and then yesterday I had my echo and CT. At least that,s how it started Had the echo on schedule and the tech was so horrified by what he saw he immediately brought me down to the er where hushed conversations were had and when I asked what the actual fuck was going on I was told a doctor would be along to talk to me. So it turns out that my aneurysm is at 9 cm and all the doctors and nurses were very twitchy about it and asked questions about am I ok and did you walk in here and how much pain are you in and I'm all DUDES I JUST CAME HERE TO GET AN ECHO AND MAYBE A CT SCAN. It didn't help that I hadn't eaten breakfast, and by 2 or 3 in the afternoon, whatever it was I was becoming hangry. For most of the day I thought I would be staying there and getting emergency surgery that night, I got a CT Scan w/contrast around 5, FINALLY after calling my GP, my Cardiologist and god knows who-all else they finally talked to my surgeon, who had been surgeoning all day - he looked at the tests and said it wasn't leaking and I could go home and continue with the existing plan. So. Surgery in 2 weeks and 4 days. I am comfortable with this decision.
That said, I was a lot MORE comfortable before I knew how uncomfortable I SHOULD feel.
Wednesday, June 29, 2016
Because you have to laugh.
Carey Marx is a British Comedian who had a heart attack and made it funny. Sadly his standup bit on BBC Radio is no longer available, but this is funny too.
Tuesday, June 28, 2016
And we're back...
Gosh I haven't written since march? Really? Ok, so to
update…
Surgeon had an extended recovery from his illness, turned out it wasn't nearly as pedestrian as an inner ear infection, and involved brain inflamation, severe vertigo and other fun symptoms one doesn't want someone performing a long haul surgerey on them having. In
the meantime I accepted an offer from friends to fly me out to Chicago in exchange for a
week of house sitting and tending to their small cat army while they ran off to frolic in Maui.(free flight to Chicago
and a week of 5 cat cuddle-puddles? IF. I. MUST.)
As you may recall our heroine (moi) was all kinds of dark and twisty earlier this year. Arriving in Chicago it was like the weight was lifted. I felt like myself for the first time in longer than I can recall, I saw all my favourite people, and did some really fun photography for my friends in a Go-Go troop, called The Janes,
I came back from Chicago feeling entirely myself again. I wanted to hold on to that. To that end, I decided for my own sanity, I needed to step back from this whole thing, and take back control for a while. I had an appointment scheduled with my cardiologist at the end of June and decided that would be when I'd get the ball rolling again. So that appointment happened last Friday, I'm now awaiting scheduling of a CT Scan and have an appointment to see surgeon in about a week and a half. I have plans for July, both beach and photography related, and I don't really care to change or cancel them so if all goes according to my plan, surgery in August? What I've learned however is that none of this is really up to me and it will happen when it happens. I just hope my CT isn't so grim I find myself canceling plans and checking in 2 weeks from now. That seems unlikely. Lets hope shall we?* If i didn't mention it before and you're someone who doesn't actually know me in the meat world, I lived in Chicago for 13 years, and returned to Massachusetts when it became clear my Mother was declining and Dad had a lot to bear on his own, after Mum passed away I stayed in MA with Dad.
Thursday, March 10, 2016
FFS
So I spoke with my surgeon last week, he is back to work but not fully better yet, as he had suffered from some kind of brain nerve inflammation/infection that caused terrible vertigo (how shitty does THAT sound?). He is doing small procedures but since mine's a 12 hour haul I'm going to talk to him again in 4 weeks and see where he's st then. Not thrilled about this further delay but shit happens.
So in the meantime I'm trying to get some (doctor sanctioned moderate) exercise, drumming up work (who needs photography?) and keeping calm and carrying on. Yep.
So in the meantime I'm trying to get some (doctor sanctioned moderate) exercise, drumming up work (who needs photography?) and keeping calm and carrying on. Yep.
Wednesday, February 24, 2016
Continuing to circle the airport....
*heavy sigh and an eye roll*
So late last week after sending my Cardiologist to do some nagging on my behalf, I got a call from the surgical coordinator on behalf of my surgeon. It hasn't been a good year for my surgeon so far. He had to take time off to go out to CA for a couple of weeks when his father suddenly had to have open heart surgery, and then, no doubt due to the cesspool that is airports and airline travel, he got sick himself upon his return. I assume some kind of inner ear type thing since he has apparently been experiencing balance issues, which clearly makes him unable to perform surgery.
So.
I was offered the option of seeing another doctor but not at the same hospital. In addition to not wanting to forge a new relationship with a new surgeon (my guy didn't kill me the first time, I'm gonna trust him to go 2 for 2) I also have no interest in having to go through all the testing and bullshit AGAIN, nor having to drive into Boston or Newton, where they keep the other good hospitals. I can wait. Hopefully not for much longer. Coordinator said he would contact me in 2 weeks (so, next week) and assuming the doctor was all better, we would schedule my surgery asap. If I am in the hospital by mid March I will be happy (albeit surprised)
I'm feeling slightly less spiky since my last post and while I still feel rather broken on the inside I don't feel quite so much like I'm going out of my mind. I'm trying to get more exercise (and by exercise I mean walking a few times around the grocery store/target etc) but anything strenuous than walking is exhausting. Yesterday, earlier in the day I was up and down my basement stairs trying to get some things in order, then I went to my studio. Since people park like complete twats (you do not need to be 5 feet away from the car next to you) I had to go to the additional parking lot, which involves a flight of about 30 steps up, and then down again to get to the building. Even though I scaled the stairs slowly, breathing deeply the entire way I still had to stop at the top for a minute, I literally could barely breathe and for the rest of the day I was absolutely exhausted. I have never been the fittest person in the room and I doubt I ever will be but I never thought I'd actually MISS exercise. My god I'd love to be able to go to the gym and do a 30 minute speed walk followed by some weights. I'm even thinking about outrageous things like getting some personal training and maybe trying Couch to 5k (Obviously once I'm all fixed and docs have signed off on it) Not sure my knees, hips (and lets be honest, my tits because even in a sports bra they fly around like puppies fighting in a pillowcase) could bear running, but perhaps a gentle trot. I just want to have energy again. I honestly don't remember what that's like.
So that's my gloom and doom for today. Peace out, bitches!
So late last week after sending my Cardiologist to do some nagging on my behalf, I got a call from the surgical coordinator on behalf of my surgeon. It hasn't been a good year for my surgeon so far. He had to take time off to go out to CA for a couple of weeks when his father suddenly had to have open heart surgery, and then, no doubt due to the cesspool that is airports and airline travel, he got sick himself upon his return. I assume some kind of inner ear type thing since he has apparently been experiencing balance issues, which clearly makes him unable to perform surgery.
So.
I was offered the option of seeing another doctor but not at the same hospital. In addition to not wanting to forge a new relationship with a new surgeon (my guy didn't kill me the first time, I'm gonna trust him to go 2 for 2) I also have no interest in having to go through all the testing and bullshit AGAIN, nor having to drive into Boston or Newton, where they keep the other good hospitals. I can wait. Hopefully not for much longer. Coordinator said he would contact me in 2 weeks (so, next week) and assuming the doctor was all better, we would schedule my surgery asap. If I am in the hospital by mid March I will be happy (albeit surprised)
I'm feeling slightly less spiky since my last post and while I still feel rather broken on the inside I don't feel quite so much like I'm going out of my mind. I'm trying to get more exercise (and by exercise I mean walking a few times around the grocery store/target etc) but anything strenuous than walking is exhausting. Yesterday, earlier in the day I was up and down my basement stairs trying to get some things in order, then I went to my studio. Since people park like complete twats (you do not need to be 5 feet away from the car next to you) I had to go to the additional parking lot, which involves a flight of about 30 steps up, and then down again to get to the building. Even though I scaled the stairs slowly, breathing deeply the entire way I still had to stop at the top for a minute, I literally could barely breathe and for the rest of the day I was absolutely exhausted. I have never been the fittest person in the room and I doubt I ever will be but I never thought I'd actually MISS exercise. My god I'd love to be able to go to the gym and do a 30 minute speed walk followed by some weights. I'm even thinking about outrageous things like getting some personal training and maybe trying Couch to 5k (Obviously once I'm all fixed and docs have signed off on it) Not sure my knees, hips (and lets be honest, my tits because even in a sports bra they fly around like puppies fighting in a pillowcase) could bear running, but perhaps a gentle trot. I just want to have energy again. I honestly don't remember what that's like.
So that's my gloom and doom for today. Peace out, bitches!
Monday, February 8, 2016
So it's February
Today marks 4 months since my surgery was originally scheduled to happen (before it was pushed back a week). Today I'm waiting to hear back from surgeons office about a surgery date. A week and a half ago I had a trans-jugular liver biopsy, which I have to say was really fucking unpleasant, but my liver is the one that pulled the shenanigans that cancelled my surgery back in October, and the concern is still that my liver might not survive the surgery, which would mean a liver transplant as well, which is super duper awesome. I really hope it doesn't come to that, but there's no way of knowing. Whatever the outcome, it should happen in the next few weeks. Since I basically had a nervous breakdown in front of my surgeon when I saw him a few weeks back I'd like to think he realizes that whether or not he has patients that are more urgent than I am, that I am coming apart at the seams and this has to happen soon.
So since the debacle last October I've become more and more...I don't know...damaged? neurotic? anxious? depressed? I don't know how to describe it except to say that I look at pictures of myself a year ago and feel like I don't even know who I am anymore. I've let this shit define me, so in addition to the actual physical healing process, I will also need to do some serious work on my psyche. I'll find a shrink and whatnot, but for now I"m just keeping my head down and trying to stay sane(isn) until this is over. I don't think I've ever been this unhappy in my life. No breakup, no disappointment, no passing of a loved one, no teenaged angst has ever left me feeling so completely detached from who I am. This is not who I want to be. I don't want to be heart surgery girl. I don't want to be fucked up liver girl, I don't want to be always greeted with a sympathetic-head-tilt "How are you doing?" girl, I don't want to be cries-at-the-drop-of-a-hat-for-no-logical-reason girl. I want to be photographer girl, world traveler girl, works out at the gym 4 times a week girl, I want to be healthy, I want to be strong, I want to not be whatever the fuck it is I've become.
So that's where I"m at. Time for a Xanax and a nap.
So since the debacle last October I've become more and more...I don't know...damaged? neurotic? anxious? depressed? I don't know how to describe it except to say that I look at pictures of myself a year ago and feel like I don't even know who I am anymore. I've let this shit define me, so in addition to the actual physical healing process, I will also need to do some serious work on my psyche. I'll find a shrink and whatnot, but for now I"m just keeping my head down and trying to stay sane(isn) until this is over. I don't think I've ever been this unhappy in my life. No breakup, no disappointment, no passing of a loved one, no teenaged angst has ever left me feeling so completely detached from who I am. This is not who I want to be. I don't want to be heart surgery girl. I don't want to be fucked up liver girl, I don't want to be always greeted with a sympathetic-head-tilt "How are you doing?" girl, I don't want to be cries-at-the-drop-of-a-hat-for-no-logical-reason girl. I want to be photographer girl, world traveler girl, works out at the gym 4 times a week girl, I want to be healthy, I want to be strong, I want to not be whatever the fuck it is I've become.
So that's where I"m at. Time for a Xanax and a nap.
Sunday, January 10, 2016
Happy New year y'all!
Rang in the new year quietly in a small apartment in Manhattan with a longtime friend, one of her co-workers, a corgi, and a cat. It was entirely wonderful.
So with the trip to New York, came the anxiety I now experience with travel. Xanax gets me through, but it's frustrating as all hell to me that where once while en-route anywhere exciting I was thrilled, now I spend the journey haunted by dark thoughts - what if something happens while I'm on my way? What if there's one flight of stairs too many coming out of the subway and my heart just bursts? Nobody knows me, nobody would know if I drop like a stone it's less likely to be a heart attack and more likely to be aortic dissection? What if something happens while I'm sleeping at a friends house and they get to be the one that *finds me*. I refuse to stop traveling at any opportunity, but it makes me SO ANGRY that I think this way now. Will I always feel this way? Will there ever be a time in my life that I don't feel my heart beating in my throat if I scale more than ten stairs or walk up a gentle hill? Will I ever NOT feel like a tired old lady? Will I ever be able to travel to places like Lisbon again or will the hills keep me at bay? Will I ever TRUST my heart not to betray me again? I've spoken to a couple of friends who survived cancer and while Cancer and Cardiac issues are two very different animals, once your health has been compromised in a major way like that, it's very hard not to constantly wonder, what's next?
Fuck this. Fuck it all with a rusty chainsaw.
Anyway - With the rollover to the new year I am no longer able to keep pushing this impending surgery to the back of my mind. It's going to be a long month but I need to start mentally steeling myself to go through this shit AGAIN. I saw my cardiologist yesterday, nothing really came of that since he's only been my cardiologist since last June, and really, aside from my dress rehearsal last october and an increasing *like shit* feeling, nothings changed. I have the CTScan on the 14th, then follow up with surgeon on the 22nd. Then I'll get my date, then I'll know.
Meanwhile, trying to get back to work after an abysmal Xmas season
Rang in the new year quietly in a small apartment in Manhattan with a longtime friend, one of her co-workers, a corgi, and a cat. It was entirely wonderful.
So with the trip to New York, came the anxiety I now experience with travel. Xanax gets me through, but it's frustrating as all hell to me that where once while en-route anywhere exciting I was thrilled, now I spend the journey haunted by dark thoughts - what if something happens while I'm on my way? What if there's one flight of stairs too many coming out of the subway and my heart just bursts? Nobody knows me, nobody would know if I drop like a stone it's less likely to be a heart attack and more likely to be aortic dissection? What if something happens while I'm sleeping at a friends house and they get to be the one that *finds me*. I refuse to stop traveling at any opportunity, but it makes me SO ANGRY that I think this way now. Will I always feel this way? Will there ever be a time in my life that I don't feel my heart beating in my throat if I scale more than ten stairs or walk up a gentle hill? Will I ever NOT feel like a tired old lady? Will I ever be able to travel to places like Lisbon again or will the hills keep me at bay? Will I ever TRUST my heart not to betray me again? I've spoken to a couple of friends who survived cancer and while Cancer and Cardiac issues are two very different animals, once your health has been compromised in a major way like that, it's very hard not to constantly wonder, what's next?
Fuck this. Fuck it all with a rusty chainsaw.
Anyway - With the rollover to the new year I am no longer able to keep pushing this impending surgery to the back of my mind. It's going to be a long month but I need to start mentally steeling myself to go through this shit AGAIN. I saw my cardiologist yesterday, nothing really came of that since he's only been my cardiologist since last June, and really, aside from my dress rehearsal last october and an increasing *like shit* feeling, nothings changed. I have the CTScan on the 14th, then follow up with surgeon on the 22nd. Then I'll get my date, then I'll know.
Meanwhile, trying to get back to work after an abysmal Xmas season
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.
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.
Ingredients:
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.
Ingredients:
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
*eyeroll*
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.
Yep.
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.
Yep.
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.
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.
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
Grumblegrumblegrumble
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.
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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.
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