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Tuesday, April 24, 2012

127

Vignettes From a Hospital Overnight

I stand up and pace around the hospital lobby again. We — my husband, my nine-year-old daughter, and I — arrived here at 11 for my surgery at 1. My implanted pacemaker device is malfunctioning and needs to be replaced, three years before its originally anticipated due date. The Information Desk lady tells me my procedure is actually scheduled for 2:45, and I won’t be called to the operating room floor until 1:30. She smiles and hands me one of those coaster things with red lights that buzz when your table is ready at a chain restaurant. Great, I think, having heart surgery is now just like going to Applebee’s on a busy Friday night.

What to do for two and a half hours? I can’t eat anything and brought no phone/books/iPod as per instructions. There’s no use going anywhere. It’s January and 10 degrees outside. My daughter snuggles up to me and turns on her iPod. I play Scrabble on my husband’s phone until that gets boring. I look at people in the lobby and wonder what surgeries they’re having until that gets boring. I watch people leave the hospital cashier’s office and wonder what it’s like to be uninsured, but that gets boring and depressing. Finally I stand up and walk around the lobby, occasionally sighing loudly and dramatically, so everyone can see what a bitch I am. A hungry bitch having heart surgery. My husband and daughter get sandwiches and I watch them eat, enviously. Finally my Applebee’s buzzer goes off.

* * *

I’m in the surgical prep unit, lying on a hospital gurney behind a curtain and wearing only the ever-fashionable johnny and slip-proof socks. It’s freezing, but the nurse has thoughtfully brought me a warm blanket. The anesthesia resident has installed IV #1 in my left arm. Doctors and nurses stream in and out with random questions and comments.

My husband and daughter sit on chairs next to the gurney. My husband is attentive; my daughter got bored after they set up the IV and is now reading one of her 900-page fantasy novels with a dragon on the cover. We’ve taken her out of school for the “real-life learning experience” at the hospital, but so far all she’s learned is that hospitals screw up a lot and are more boring than school.

Finally it’s time to go. My daughter and I hug — me warmly, her a little offhand. I kiss my husband and we smile lovingly but nervously at each other. There is always the remote possibility I won’t be seeing them on the other side. My husband understands this all too well — has understood it for 20 years since my heart condition first made itself known, when I collapsed in our apartment. My daughter, thank goodness, doesn’t understand. She is too young to worry that this may be the last time she’ll see her mother alive. They exit and I swallow the lump in my throat. The nurse wheels me down the hall to the operating room.  There, several residents move me efficiently from the gurney to the operating table. They don’t tell me when they administer the anesthesia, and the darkness is surprising, swift, and complete.

* * *

I wake up from the blackness of general anesthesia retching my brains out. There's an almost unbearable weight over my heart that's making it hard to breathe. After barfing I realize the one of the residents is pushing hard on my chest. Other unpleasant sensations emerge, made oddly more unpleasant by half-feeling them through the fog of pain medication. Time is vague but before I know it I’m retching again. “Give her 5 mg of Zofran,” I hear someone say. After a minute I feel a bit of relief from the nausea. They are wheeling me out of the OR, the young resident never releasing the pressure on my chest.

My doctor’s face looms in front of me in the hallway, followed closely by my husband's and daughter's. They're pale and serious, and even my anesthesia-addled brain realizes I have to pull it together and be strong for them. “Hi, loves,” I say in a post-intubation croak, trying to be comforting though I’m sure I look a wreck. I barf again. My husband says it’s late and he needs to get our daughter home. It’s late? How late? Wasn’t it just 3 p.m.? How long was I under? Somehow (osmosis?) I find out it’s 10 at night. Everything is happening too fast, like I’m stuck underwater watching everyone else bustling about on the surface. My family disappears and a nanosecond later I’m in my room on the cardiac ward, retching again. At least no one’s pushing on my chest now. I barf for three hours. I get the maximum allowed daily dose of Zofran. It does nothing. The nurse finally gives up and puts a plastic basin by my head so I can just turn and heave.

* * *

The overhead light comes on and I jerk awake. It’s 6:30 a.m. and the overnight nurse is coming in to flush my IVs before she leaves at 7. They never actually let you sleep through the night in the hospital — someone’s always coming in to check on you. I guess this is to make sure you haven’t expired while they’re away. I look down at my body and take stock.

  • Original IV in left arm
  • Second IV in left arm
  • Pulse monitor on left forefinger
  • 6 sticky pads on chest and torso, connected by wires to heart monitor
  • Foley catheter
  • IV in right thigh
  • Pulse monitor on right forefinger
  • IV in right arm
  • Arterial line in right wrist
  • Oxygen tubes in nostrils

The skin on my chest is dried-iodine orange. I’m basically a mass of wires. I feel like I’ve been run over by a truck.

On the plus side, I’m not barfing anymore. In fact, I’m starving. When the day nurse comes in at 7, I ask her about breakfast and about getting rid of the catheter. Catheters are the worst. They are intrusive and uncomfortable, and more than just about anything else in the hospital, they rob you of your independence and adulthood. I will try for an hour to convince the day nurse to remove mine, with no success. “We’ll get your catheter out when you’re able to walk to the bathroom,” she says in a voice that’s simultaneously cheery and accusatory. Why aren’t you up and around already, you lazy sot? You’ve been out of surgery 10 hours. I decide then and there to get up as soon as possible.

But “as soon as possible” is clearly going to take a while. I’m hooked to a bunch of machines and IV bags that don’t look portable. The nurse tells me I must eat breakfast and endure some tests before I can get up. And my body aches, a mixed chorus of pain: the intense, raw soreness of my surgical incision, the persistent liquid throbbing in my veins from the IVs, the inflamed ache in my throat from the breathing tube. Every time I move even slightly I’m caught by spasms of discomfort. I ask for Extra Strength Tylenol. It takes the edge off and I sit up and eat breakfast: pancakes, bacon, juice, and a fruit cup. While I eat, the nurse and her assistant, a sweet young woman in nursing school, put pressure socks on my legs to prevent blood clotting. Between these, my wrinkled, sweaty johnny, and my assorted IVs and wires, I am now quite the sight.

As I finish breakfast a group of 8 or 9 med students comes crowding into my room. It’s obvious I’m the Main Attraction on the day’s Cardiac Learning Tour. They read my chart and ask me a few solemn questions but mostly they just stare and take notes. One young woman gives me a pitying, sympathetic smile. In those few minutes I shrivel into an infirm senior citizen. I’ve never felt so old in my life. I want to yell at that young woman. Stop smiling at me! You think you’ll be young and healthy forever, but you won’t. You’ll turn around and you’ll be 40 and achy if not actively infirm, and you’ll wonder where the time went. But instead I just take a deep breath as they shuffle out.

* * *

In mid-morning my doctor comes in. I pretty much worship my doctor. He's a small, balding man of Indian origin with wire-rim glasses and a plummy British accent. I’ve known him for 18 years, and I’ve never seen him in anything but scrubs and clogs. Despite his size he acts with tremendous authority, and even my control freak nurse defers to him. By the time he arrives I’m de-catheterized (hooray!) and sitting in a big armchair by my bed, waiting for a sponge bath so I’m presentable to my family who are waiting outside. He tells me how the surgery took 6+ hours because of complications, how close I came to needing a new heart valve, how I lost two pints of blood at the end, despite the resident’s pressure on my chest.

It’s hard to hear this, to realize that my health has degenerated and that I have no control over that degeneration. But this is why I love my doctor so much — he takes the time to explain things in layman’s terms, to answer all my questions. And while what he says isn’t reassuring — in fact it’s damned depressing — his willingness to keep me thoroughly informed brings relief. I’ve had a potentially fatal genetic heart condition hanging over my head for 20 years, and his knowledge and authority have been a touchstone for me, helping to keep me focused on the business of living.

After my doctor leaves, the sweet young nursing assistant comes back and gives me a sponge bath. She tells me about her nursing classes at the local college, distracting me from the fact that a complete stranger is washing my naked, battered body. You have to give up modesty at a hospital — people are always poking you, or checking your catheter, or (when you’re a cardiac patient) putting stethoscopes and monitor patches on and around your left breast. They’re not judging your butt cellulite or your nose pores or that mole under your armpit, or if they are they know enough to keep it to themselves.

* * *

It’s 11:30 a.m., my husband and daughter have arrived and settled in. My daughter is still engrossed in her fantasy book but snuggles next to me as she reads. There is talk of sending me home. Apparently they’d rather I recuperated in my own bed than risk getting flesh-eating bacteria by hanging around the hospital. But before I can leave, I have to eat lunch, get an x-ray, and run the administrative gauntlet of discharge paperwork. The first two happen pretty fast, so by 1 I’m ready to get my wires removed and shed the johnny for regular clothes.

But then things slow to a crawl. Even after I’m dressed and ready, it’s ages before I can leave — there is paperwork, and more paperwork, and follow-up appointments to be confirmed, and prescriptions to be written, and incision care instructions to be given. I take a nap in self-defense.

Finally at 4:30 p.m. I’m released, left arm in a sling. I sit in the wheelchair and say goodbye to control freak nurse. I’m wheeled out to the car where my husband is waiting, and ease myself into the passenger seat. I'm exhausted and sore, but gear up for the traffic-heavy trip from Boston to our house in the suburbs. My daughter climbs into the back seat. I look at her little elfin face with its big blue eyes. She's seen some pretty heavy things in the past two days for a nine-year-old, and she's handled it all so well. In a few weeks we will get confirmation that she has inherited my heart condition, and will have to undergo the same surgery when she grows up. This will hurt me worse than any procedure I’ve ever endured. But now all that is in the future, and my daughter and I smile at each other as my husband drives away from the hospital toward the highway, and home.

Martha Culver is a former strategy consultant and thus unable to write anything without at least one bulleted list.



127 Comments / Post A Comment

Lily Rowan

Martha! Oh man. That all sounds terrible.

Lily Rowan

@Lily Rowan By which I mean, I am glad things are not worse?

Bittersweet

@Lily Rowan: Yes, they could indeed be worse. And the advances they're making in genetic medicine right now - some of them right in our backyard - make me hopeful for the future.

Lily Rowan

@Bittersweet OMG Lily, get a grip. What I REALLY mean is, so many good thoughts to you and your family!

Kristen

Wow, just wow. Especially that last paragraph: wow.

Also, the moment when you surface out of general anesthesia post-surgery is, in my opinion, one of the most existentially unsettling experiences life offers. There's something about your consciousness coming back piece by piece, and registering pain first, before you get any of your defense mechanisms back, that just strips you down. You know what I mean?

Anyway, good essay, and good luck.

datalass

@Kristen It's awesomely disorienting, isn't it? The feeling of lost time weighed heavily on me. My mind couldn't make sense of the missing hours.

TheDragon

@datalass I have only been put under once, and I woke up convinced that they'd killed my mother.

sarah girl

@Kristen Gonna get real in this thread: To this day, I have persistent issues with sleep (mainly, being terrified of falling asleep/losing consciousness) that come from getting general anaesthesia when I was five years old. I panicked as the anaesthesiologist was counting backwards and I could feel myself losing control of my body/mind, started crying and telling my mom I didn't want to go to sleep, I wasn't ready, but it was too late at that point.

I only this past week in therapy made the connection between that experience and my sleep issues. Sucks. :(

whateverlolawants

@datalass I thought I'd been under for a while, and it was really weird to realize it was just an hour. They did the whole surgery and wheeled me to recovery in that time! I was lucky it was something simple.

thebestjasmine

@Sarah H. Both times I had surgery, I told the anesthesiologist that I was very anxious about the surgery and the anesthesia when I met with him in advance, and both times he (different doctors, but both were awesome) gave me some sort of anti-anxiety something in that IV in advance, and that made things sooo much better. Obviously you couldn't do that when you were little, but for anyone else who has surgery, this is a good thing to do.

Bittersweet

@Kristen et al: My anesthesiologist friend tells me that general anesthesia is the closest most people get to being dead, it's that deep a sleep. (No wonder you need a breathing tube!)

Sarah H, sorry about your early childhood trauma! I hope now that you've made the connection, you can start exploring a better relationship with sleep.

datalass

@Sarah H. You poor thing! That sounds awful.

I'm a bit of a control freak so, for me, the loss of control was really hard to take. I get uneasy even at the memory of it.

packedsuitcase

@Kristen It freaks me out. I've only had it once (luckily I was only sedated for my angiogram, but apparently I shouldn't remember all the things I remember from that, so maybe we won't call that a win because it still freaks me out), but I have to have it again in September and that is the scariest part of thinking about surgery. Not the recovery (though that's scary), just going under. And it's just a routine ACL surgery.

Sister Administrator

@Bittersweet most people get closer to death than that, eventually.

hopelessshade

@Kristen The first motion I made when I surfaced from anesthesia was the sign for "give me more morphine," which I'm sure reassured my parents greatly. It's true that you do have a sense of pain before a sense of existence, but as I had not read any existentialists yet, I didn't think of it quite like that. However, clearly the not-death experience did little to cull my sense of theatrics.

Did you know that children's hospitals give you FLAVORED anesthesia?

Bittersweet

@Sister Administrator: Ha, nice!

sarah girl

@hopelessshade Thanks, all - it was pretty traumatic (I also WOKE UP DURING SURGERY one time, jesus christ - although it was a minor procedure and right as they were starting, so it wasn't a big deal. I do remember seeing a nurse look down at me in terror, haha), but now that I've dredged that memory up hopefully I can poke at it and start undoing the damage. Also, I had the flavored anaesthesia - I don't remember what flavor, maybe cherry? But I feel like having the mask over my face just compounded the fear, blaaargh. Not a fan.

If I have to do it again, I'm definitely asking for AAAAALL the anti-anxiety meds!

Myrtle

@hopelessshade Please, tell me there's Cuervo-flavored tequila anesthesia.

Myrtle

@Sarah H. Oh, yeah, waking up during surgery FTW! I became aware of someone faraway screaming their lungs out, very annoying as I was trying to be surgeried. Just when I realized it was me screaming, movement next to me and I went back under. Seriously, people, keep an eye on your levels.

The other time, I woke up just as the tube had been pulled from my throat, which is probably some skillz?

t-square

@thebestjasmine I had ACL surgery when I was 17 and they gave me that anti-anxiety stuff just about as soon as I sat down in the waiting room, because I had cried for approximately 8 hours prior to arriving at the hospital and no one could do anything else with me.

hopelessshade

@Myrtle I doubt it, as the flavors are more along the "lollipop" range than "cocktail." I got coconut.

Bittersweet

@Sarah H.: I've "woken up" during surgery twice, once as a kid and once 3 years ago during a regularly scheduled procedure. It's very disorienting and you cry involuntarily and no one believes you later.

(This doesn't count being awake for my c-section...which is a pretty weird thought in itself.)

Diana

@Bittersweet

Anaesthesia is a miracle of modern science. Think about it for a minute: all around the world millions of people are having their bodily functions shut down selectively, while their bodies are opened up and other people root around inside, and then afterwards everybody is sewn up and woken up and everything is, all things considered, pretty much fine. The anaesthesiologist is probably the highest paid medical professional on the hospital's staff except for executives and that's because they do something wildly dangerous and basically insane, to a huge variety of people facing a huge variety of conditions, and if they mess up it will end terribly. They really don't get enough credit!

thebestjasmine

@Diana I gotta say, both times I had surgery, the anesthesiologist was the nicest man in the whole world, because I was freaked out and they were both so friendly and comforting and also gave me great drugs.

JaneDoe

@Kristen
When I woke up from a very minor thing, gastrointestinal endoscopy, I think? And thought I was thinking in my head but apparently it was out loud. "I want some gum."<--me, "Maybe your mom has some."<--nurse startling me from behind... Well, this hasn't added anything to the thread... I'm sorry you had to go through this, Martha!

Courteney Nielsen

@Myrtle I had surgery (my first under general) two weeks ago, and the first thing they did when I woke up was pull the LMA out, so maybe you woke up as they were pulling it out because they pulled it out because you were awake?

Shaman

Wow. Great description of the pain of hospitals. In spite of the bulleted list, I felt like I could feel every one of those aches, pains, pokes, etc. For all the tv shows about doctors there's never one from the patient's perspective, eh? Not sexy enough for tv, I guess.

Hugs for you and your husband and daughter

SarahP

@Shaman Watching a show like House from the patient's perspective would make me lose all faith in the medical world.

EpWs

@SarahP I believe they did an episode to this effect, several seasons ago.

LeafySeaDragon

@SarahP i can't watch house, he gives me panic attacks.

SarahP

@LeafySeaDragon I just get annoyed and talk back to the TV angrily, which makes my husband watch it without me most of the time. (Fine by me!)

Bittersweet

@SarahP: This is why I love my cardiologist - he's basically the anti-House.

packedsuitcase

@Bittersweet I miss my first cardiologist. He was amazing and funny and gentle and smart.

EpWs

Oof, Martha, I want to hug you and your family. Hope everything continues to go smoothly for all of you. (Also was your daughter reading A Song of Ice and Fire? Please oh please? I have a soft spot in my heart for girls reading fantasy books, especially big ones.)

Shaman

@The Everpresent Wordsnatcher Sounded like Eragon to me.

EpWs

@Shaman Ooh, good point. Dance with Dragons is the right length but may not have been out at this point, and it might be a bit much* for a nine-year-old. That said, Eragon does sound like a better fit.

(Note: does not believe in "a bit much" for nine-year-olds as far as most fantasy lit is concerned, is not a parent and probably shouldn't be.)

melis

@The Everpresent Wordsnatcher WHAT ARE YOU TALKING ABOUT, NINE YEARS OLD IS A PERFECT AGE TO READ ABOUT ALL OF THE INCEST TO EVER EXIST

Ophelia

@The Everpresent Wordsnatcher This exactly. I'm leaning Eragon, too, though. And I just hope the whole family gets a giant internet hug today.

Bittersweet

@The Everpresent Wordsnatcher: Point goes to Shaman - it was indeed Eragon. She's still a little young for Martin, no matter what melis says.

redheaded&crazy

@melis it's not really incest if it's twins doing it, is what i've always been led to understand by my brothers who would never let me in on any of their fun!

redheaded&crazy

@redheaded&crazie the above comment is for anybody who likes to pretend that i am not a real person but in fact a magical boy man wizard ... JUST TO BE CLEAR

LeafySeaDragon

@The Everpresent Wordsnatcher i remember pre-kids thinking it was cool for kids to read any book ever regardless of reading level, but there is SO MUCH great stuff out there at reading level that i'd rather my kid read something he can grasp easier. (holy run on sentence!) my 8yr just read the lotr, and he enjoyed it, but i'm not sure he quite grasped it. i wouldn't let him read grrm even though i'm a huge fan. i'm about to re-read the dragonsinger books by mcaffery to see if he can read them, i read that about his age and LOVED them!

melis

@redheaded&crazie DUDE DUDE DUDE DUDE DUDE DUDE DUDE DUDE DUDE DUDE DUDE DUDE

stormageddon

@LeafySeaDragon I read those books (they're called the Harper Hall Trilogy) when I was 8 and they kinda changed my life. Not that you shouldn't reread them again yourself, but age-wise they'll probably be perfect for him.

eiffeldesigns

@LeafySeaDragon Yeah, not so sure my mother should have let me read all of Stephen King's oeuvre at age 9-11. I mean, seriously, the kiddie sex scenes in It probably shouldn't be read by anyone, let alone a 9 year old.

packedsuitcase

@stormageddon OMG YES! My friend and I were just talking about the Harper Hall books the other day. I loved everything about them and would love to re-read them or have a niece or nephew to give them to (hint hint, younger siblings...).

Bittersweet

@LeafySeaDragon: My daughter has attempted LOTR (we read The Hobbit together) but can't quite get into them, probably b/c they're a bit old for her. Now that she's finished the Eragon books, she's reading Lloyd Alexander's Prydain series and quotes Gurgi incessantly.

finguns

@LeafySeaDragon I read some of the Harper Hall Trilogy when I was that age! And I recently (as in just finished last week) reread them with an eye toward figuring out if my 7 year old daughter would enjoy them in the next few years. My verdict: The reading level is not that high, so precocious but young readers can probably get through them. And there isn't much explicit violence or sexuality, just enough to keep things exciting. There were three things that gave me pause, though. First, the alternate universe that AM created is so awesome and amazing that I'm not sure it would be completely comprehended by kids. Not that that's a hugely bad thing - I've enjoyed many, many books in my life both as a kid then again as an adult when I understood them more fully. Second, there is a bodice-ripper theme that runs through these books that I think might be hard for kids to analyze with any context. The queen dragon and the weyrwomen have to be coerced by their hormones into having sex, and even though the weyrwoman is the leader, her "mate" is always bossing her around and reining in her emotions. I was really struck by this when I was rereading them. Third, there aren't a lot of women in them. Lessa and Menolly are really the only women in any of the books who have any power. I think #2 and #3 are products of the time when the series was written - a lot of popular science fiction/fantasy of the time had the same issues.

In the end, I decided that I would wait until my daughter was old enough to notice and contextualize the treatment of women in the books, and I don't think that will be before she's a teenager (and probably, sadly, less excited about my book recommendations).

Good grief, sorry for the graduate thesis about this subject, I got a little carried away because this is such a timely issue in my life!

LeafySeaDragon

@Bittersweet this series is great, my son is on silver dragon and he LOVES them! http://www.readingreview.com/youngreader/series_dragoncodex.html

redheaded&crazy

@melis if you're trying to imply that my comment may be excessively inappropriate, i won't hear it, and i won't respond to it!

aaaAAAaaaAAaaAAAAA

@finguns I loved those books, but I agree about the last two issues, I remember being really annoyed by the female dragon hormones thing. Also apparently in the weyrs the children of people like the dragonriders get fostered? Poor Lessa.

MoxyCrimeFighter

@LeafySeaDragon Ooo ooo ooo, the Enchanted Forest series by Patricia Wrede! Not inappropriate at all, as far as I remember (my mom let me read them and she wouldn't let me watch The Simpsons until I was 15, so). Full of dragons and magic and featuring a cool uncommon princess heroine.

EpWs

@MoxyCrimeFighter EMPHATIC SECOND to Patricia Wrede. Cimorene is one of the best role models I could have had growing up.

@everyone I love that we're having this discussion! I was reading stuff that was probably too much for me when I was young (no ill effects to speak of, just more reading), but it's absolutely not for everyone, and I would never want to suggest that I know anything about what's right for anyone's particular kid, promise. I am mostly very very glad that kids are reading, and that they're reading fantasy! High five to all the book-providing parents out there in 'Pin land, I wish I could send you all gift certificates to your local independent bookstore of choice. :)

Shaman

@Bittersweet The WINNAH and still CHAMPEEN! \0/
My stepkid was reading it about that age, so I had insider knowledge. Sorry @Everpresent Wordsnatcher. Although I think you would make an awesome parent :D

My God,WREDE. YES. but also Tamora Pierce. I ate that shit up.

Myrtle

@LeafySeaDragon Oh, Dragondrums!! Argh! Then mine were lifted by my younger sister, and I received many cool points.

Inkling

@melis
BUNCH OF HAMLETS, THE LOT OF YOU

NuckingFux Nix

@MoxyCrimeFighter Seriously, these remain some of my favorite books to this day! They were just so funny and smart and I loved how strong the main character was. I've never heard anybody else reading them but I'm so excited you mentioned them.

Also, there is an Australian series called "The Enchanted Wood" about a tree in which forest creatures live and there are a series of magical rotating lands at the top of it. Sort of an Aussie Narnia if you will.

I read ALOT as a kid. Probably why I am so pale today.

aaaAAAaaaAAaaAAAAA

@NuckingFux Nix Ah the Enchanted Wood, if I am not mistaken that's one of Enid Blyton's books (a British author) she also wrote the Adventures of the Magic Wishing Chair which is equally wonderful. Loved those books as a child.

Also, nice username!

NuckingFux Nix

@Sailor Jupiter Thanks! I de-lurked to talk about those books. The username is also from a favorite novel series, of the trashy romance variety. The Immortals after Dark series, by Kresley Cole.

I assumed the Enchanted Wood was Aussie because my grandmother of that origin had them at her house, as they were some of her favorites. Good to know the author, thanks!

aaaAAAaaaAAaaAAAAA

@NuckingFux Nix you're welcome, she's written a lot of books so I hope you read more of them!

yep I know, I think she's one of the better trashy romance writers. If you like her books definitely look up J.R. Ward's Dark Brotherhood (some bits are really cringey like the hilarious names) but overall they have a lot more substance than most. On the opposite end of the romance spectrum, Jennie Crusie is good too.

anachronistique

@The Everpresent Wordsnatcher MORWEN. I want her house. And her sleeves. And her super-intelligent cats.

New Commenter Name

That sounds like a horrendous experience! Please tell us that you are recovering well. Perhaps by the time your daughter reaches adulthood there will be an easier procedure to treat her condition.
And your daughter is 9? And she is reading a HUGE fantasy novel? Impressed! My daughter is 8 and Ramona the Great is about her speed right now.

Bittersweet

@Curiouser and curiouser: Yes, thanks, I'm doing pretty well now (3+ months later) but still dealing with the repercussions of the surgery and my daughter's diagnosis. Maybe that'll be Vignettes pt. 2...

barnhouse

Holy mackerel, @Bittersweet. I feel like I've known you for all this time and THIS?!! This crazy terrible thing. Thank heaven for small bossy Indian guy! Jesus. Crikey. YES pt. 2, I must know ALL. Thinking of you such a lot and inward candle lit, and all best wishes for fabulous stem-cell type advances to happen immediately for you both, <3

Bittersweet

@barnhouse: Thanks, Maria. This is not something that most people know about me. Although I guess they do now...

sevanetta

@Bittersweet I felt the same way! I have seen your coments around here Bittersweet.

Also, I have a friend who had a pacemaker put in at age 21 (her valves are reversed - nowadays they perform operations on tiny babies who have this and put the valves in their right places, but they weren't doing that in 1981) and she has lived a fine fine life (30 now and just had the pacemaker removed because the leads kept getting infected). My point is that I hope since your daughter has you to support her, and she has the knowledge from a young age, her experience in dealing with the treatment required and having a pacemaker will be a different experience to yours. My best wishes to your family.

TheDragon

I am sending my best wishes to you and your daughter. I can't imagine.

SarahP

This was amazing. Best wishes for your and your family's health.

AmandaBunny

This really spoke to me. Beautifully written. And so many healthy thoughts to you and your daughter!

annev6

So glad you're ok! I hope you're doing well. There are few times in my life I can ever remember being as miserable as when I've been waiting to be discharged from the hospital. Last time it took the whole day for them to even tell me really what was going on and IF I'd get to leave, then they kept "forgetting" to put in the paperwork. Someone texted me to tell me I should take that time to just enjoy being pampered - and I really wished at that moment there was a way to text message someone a punch in the face.

whateverlolawants

@annev6 I continue to be amazed by how crappy hospitals can be. I'm actually really lucky- the two times I've stayed overnight (a few nights, at that), I was treated really well (other than the nurse who didn't get there quickly when I was throwing up my pain meds and crying from the pain.)

But my friends are nurses, and between their stories and those of friends who have been patients, I think I've just gotten really, really lucky.

harebell

@annev6 Pampered?! for the love of god.

harebell

@whateverlolawants I don't know. It probably varies a lot regionally and by hospital. But my experience has been that the more serious the situation, the more competent and empathetic the nurses they send in to take care of you. Oncology nurses -- especially for people that they know are going to die in the next 24-48 hours -- are absolutely amazing, at least in my experience.

annev6

@whateverlolawants @harebell The one thing that seems to ring true is just that they are totally overwhelmed and unless you're willing to make a big fuss no one is going to do anything for you beyond regular "keep you alive" stuff. Luckily I was well enough to stand up for myself. I had to throw fits to make sure I got the proper perscriptions my doctors had told me I'd be given, and to get them to even start my discharge paperwork. The one thing I chose to let slide though was the fact that I spent the afternoon of my last day on a bare mattress because they didn't finish changing my sheets. The hospital is hell and I will never go back unless I am unconcious.

datalass

@annev6 So true. Hospitals are not the place for stoicism. They are the place for (justified) fit-throwing on the regular.

Bittersweet

@annev6: Pampered?!? The mind reels. It's the hospital, not freakin' Canyon Ranch.

Angry Panda

@harebell Oncology nurses are the best, indeed!
@Bittersweet This was beautiful, and at the same time painful to read. The waiting around, loss of dignity and modesty, the pain and discomfort, you are so spot on in your observations. I wish you and your family all the very best!

Slutface

Many thoughts and well wishes to your family. Wonderful piece, thank you for writing it.

Tuna Surprise

Well, bless your heart (literally)! I have a genetic heart condition in my family and a few years ago when my aunt had her valves replaced, she woke up from surgery in intensive care and whispered to me "please smother me with my pillow". The pain from heart surgery must be so intense. We can laugh about it now (because she claims she doesn't remember the request) but she came pretty close to being euthanized.

Bittersweet

@Tuna Surprise: Thanks. Did your aunt have open heart surgery? I'm told that's just the worst. All my surgeries have been intravenous/surface, no chest-cracking involved, thank goodness.

Tuna Surprise

@Bittersweet
It was the full crack open. But I remember how bad she said her throat hurt from being intubated for hours! Ugh, just so awful. So glad you didn't need to get a piggy valve yet!

For what it's worth, my mom has two brothers and a sister. One brother died as a child (in the 1930s) from his heart problem. The other brother and sister are still going strong in their 80s with an assortment of valve replacement/repairs. It's amazing how much heart medicine is progressing. My sister has the same thing and she has hasn't been cut open yet. I have all the hope for your daughter being healthier and suffering less!

fondue with cheddar

WOW, that was beautiful and heart-wrenching. Good luck and good health to you and your family, Martha. I hope that, by the time your daughter is your age, medicine will have progressed so that she won't have to go through as much as you.

whateverlolawants

Really poignant and well-written. I hope medical professionals read these kinds of stories. Thanks for sharing this, Martha.

redheaded&crazy

Oh the last paragraph with your daughter broke my heart :(

I've been very lucky to never have had an extended stay in the hospital ... it's so sad and scary watching people you love go through it though. What I found most troubling was how quickly cognition deteriorates in the hospital ... you're so divorced from reality and I'm sure the periodic waking up throughout the night doesn't help either.

nonvolleyball

@redheaded&crazie I got to have an epic monthlong stay due to a massive infection that followed a burst appendix, & I just lost all touch with the passage of time. some nurses would write the day/date on the white board in my room, but even that seemed unreal, like, "okay, if you say so. whatever that means."

after I got out, there were a couple amorphous weeks of at-home/increasingly out-in-the-world recovery, but then I had to go back for another four days, & by the time I was actually back to work it was mid-June.

so I essentially lost two months, & for the rest of the year basically had that thing where you take Monday off work & then you're like "oh, I keep thinking it's Tuesday, not Wednesday"--but on a massive scale. every time a new month would start, I'd be like, "how is it OCTOBER?! shouldn't it be AUGUST?!"

so, in conclusion, yes. (& obviously this piece spoke to me on a number of levels, & I'm glad Martha shared it. as tough as things will be for her daughter, I bet the experience will make her better equipped to handle the harsh realities of life & death far earlier than her peers. as much as "really comprehend human mortality" was an awful life lesson for me to learn, I'm ultimately grateful for it.)

Susanna

Thank you for this, Martha. A friend has just (surprise!) had to have a defibrillator fitted, poor sod, and I'm struggling for the words to put in a letter to him. It helps to read someone else' account of something similar.

thebestjasmine

All the best for you and your family, especially your little girl. That last paragraph broke my heart (um, pun really not intended there).

fleurdelivre

Oh man. Because it's been ten years or so since the last time I had any type of surgery, I'm always thinking to myself, "it's not THAT big a deal." But I was 12 the last time I had it and in that phase of development where everything was taken in stride and I get the feeling that if I had to do it again, I would be way more whiny about recovery and way more freaked out about my body going wackadoo.

Also, the part about your daughter being 11 and not understanding that there's always a risk of not making it...well, it gave me a greater appreciation for how my mom must have felt when I did go under that last time and now I just want to go home and give her a giant bear hug.

magic03

Martha - what beautifully honest recount of your experience! Thank you for highlighting the patient voice, one that often goes unheard in healthcare.

LeafySeaDragon

my 8 yr old had a murmur and we had to go to many tests and do lots of lots of waiting. from 'we hear a murmur' to 'it's benign' took about 4 months. it's terrifying. i feel for ya lady! (and in no small part because you got your chest cracked open! OW!)

Bittersweet

@LeafySeaDragon: Actually, I didn't have my chest cracked open, everything is done intravenously (with LASERS, people!) and the one incision for the battery is under the collarbone. But it's still pretty hard on the heart, and on the body overall.

Glad your kid is ok! That is awesome news.

themmases

@LeafySeaDragon This is a day late, but I work a lot with kids who are getting heart imaging and I was just wondering how good a job we really do of communicating about it to people, and how often they're just cut loose to stay up all night reading WebMD.

We do so many MRIs (with the fancy cine MRIs of moving child hearts, and extra fancy research sequences, which is where I come in) of kids with a "murmur" or "right coronary artery not visualized on ECHO" (which probably wouldn't be a problem even if your right coronary artery were weird). Honestly, those children are fine so often I search for one of those indications if someone asks me to find them a normal cardiac MRI. With how long it takes to go through the whole process, I really hope someone at my hospital is being honest with families about that. And so sorry that you had to go through it.

Hooplehead

Surgery is so scary. I'm glad you have a good doctor. The nurses and PAs can be so mechanical and just run through the motions without talking to you about any of it. It is such a relief when you have an advocate that can translate for you and pull rank when it's necessary to get what you need. Best wishes for your recovery.

stormageddon

Thank you for sharing this. Your husband and daughter sound like two fully and completely awesome people, and having loving support like that can really help in ways we don't fully understand. And so much yes to the way time runs our bodies down. Hopefully by the time we all qualify for the early bird specials, Science will have figured some new clever tricks.

eiffeldesigns

I have a surgery phobia. I had to go under the knife for a minor wrist surgery earlier this year and nearly lost my shit. I cannot, cannot, imagine having to deal with some of this magnitude. Would definitely not have the same level of composure and grace.

bookworm

Martha, this post made my heart hurt for you, especially the last paragraph about your daughter inheriting your condition. I'm in a similar position to hers - my mother passed along some weird genes to both me and my brother and apologizes constantly to both of us. Sometimes she wonders if having children was fair or right for her to do (even though she was unaware of her disorders when she had us). I'm happy to be alive and proud to have her as my mother, and I'm sure your daughter will feel the same way.

boyofdestiny

This was beautiful, Martha. Good luck to you and your family.

crookedlegs

It's tough sometimes to be that young girl smiling sympathetically - as a learner, you try and try and try to put yourself in your patients' shoes, and to be the comfort that they need you to be, and yet you know that they need much more than your feeble smile can give them. And you know that as uncomfortable as it feels to be smiling awkwardly in the corner, it's a million times harder to be in that bed. And you just want to give your patients all of you, you would if you could if that would make them better, and you can’t. At least not yet. And so you look at your clipboard and you take as many notes as you can and you spend another day swearing up and down that you will be as good as you possibly can be when its your time.

I hope your recovery is swift and fantastic and I wish you and your daughter all the luck in the world.

amq
amq

You just brought a flood of memories back of being that daughter, face shoved in a book, hanging out in my mother's hospital room never really understanding the seriousness of it all. But knowing I needed to be there for her.

aaaAAAaaaAAaaAAAAA

This was enlightening to read and very well-written, I really wish you and your family the best.

julie252

This was chilling to read. Beautiful and eloquent, but for me...chilling. I've been the daughter, the patient, the mother in this story. The last paragraph gripped me. After living with my heart condition for 20+ years and seeing my mother undergo a heart transplant, I finally got my genetic test results. The next step is to test my young kids and I haven't brought myself to do it yet. I can deal with everything else, but to think they will have it seems unbearable at times. Thanks so much for sharing this story.

Bittersweet

@julie252: It's hard to deal with genetic testing. I understand your hesitancy to test your kids, absolutely, but my husband and I felt it was better to know upfront if our daughter had the genes for the condition, so we could prepare for it. Even knowing she has my condition and having her undergo surgery is better than the way I found out about my condition - suddenly collapsing and almost dying at age 21, for no known reason.

Anji

Oh my goodness. Martha, I'm glad to know that you're okay, and I'm wishing you and your daughter (and your husband, too!) all the best. <3

Myrtle

I'm so glad the surgery was successful and you are back with your family, Martha.

that one girl

thank you for sharing your story! as a pediatric cardiac ICU nurse, the majority of my patients are too young to describe their experiences, so you've given me some incredible insight and i really appreciate it. and we are all control freaks, it's true :)

Burly-Q

@that one girl Girl! Ya'll are awesome tho! I was born with TOF and the pediatric cardiac nurses at Texas Children's were great! (So my mother tells me, I was a baby). They even made me a rattle out of a RX bottle filled with plastic bits and decorated in multicolored tape! I still have it (after 24 years)!
Rock on!

that one girl

@Burly-Q that's fantastic! i'll have to keep that in mind the next time i have a rattle need. i love my job and the families i get to work with. and it's just so neat to hear from grown-up CHD patients...you're the ones that inspire us!

Bittersweet

@that one girl: I was really OK with my nurse being a control freak, except when she wouldn't remove my catheter. Otherwise she did a fantastic job, especially when she had to hork on my wrist for 25 min. to stop me from bleeding out when she took out my A-line.

laurel

Ugh, post-anaesthetic nausea, I think I fear you more than surgery.

'Glad you're with us, Martha, before and after.

catsuperhero

Martha, the last paragraph...oh my god. Every reason in the world to support funding for genetic medicine, right there.

I had to tell you that I feel you on the nausea. As soon as I had my child--and I mean the second he was out--I was throwing up my brains due to the epidural. Repeatedly retching. I also had Zofran, and it also did nothing for me. At some point I fell asleep, and woke up feeling better...but only after hours of what was worse than any hangover or flu I've ever had.

whimseywisp

sending you & your family hugs & good wishes. thank you so much for sharing <3.

Burly-Q

Martha, thank you so much for writing this!! I'm having open heart surgery in June (need a heart valve, born with TOF) and while its my second one, this is the first one I will remember (I was a baby the first time). I'm freaking out (obvs) and this is def. giving me an idea of what to expect before and after.
When I got my heart catheter thing done two weeks ago the nurses were all "ooo your so young what are you here for" (24 and shouldn't you know that already?!) so I'm a bit nervous about waking up, the incision (did you get yours stapled or sewn?!), the catheter (is it true they can give you UTI? Does it hurt?), staying in the hosp for a week, etc. etc.
Talk about article timing, right?!

Bittersweet

@Burly-Q: I'm sorry to hear about your upcoming surgery, but glad this gave you an idea of what to expect. I've never had open-heart, but from what I've heard, it hits you even harder when you wake up and the recovery time is longer. But you may not have the same reaction to the anesthesia as I did (apparently I'm extra-sensitive), and you're younger so there may be fewer complications.

My incision was actually closed with sterile adhesive, no staples or stitches - the area under my collarbone where the incision was is really thin/damaged from so many prior surgeries and so much scar tissue, so glue was the best option.

I've heard Foley catheters can give you UTIs but (knock wood) have never gotten one from a catheter.

All the best for your procedure! We'll be thinking of you and sending you strength and good vibes in June.

sevanetta

@Burly-Q best of luck, will be thinking of you

Burly-Q

@Bittersweet thanks again, ma'am! good vibes between boston and nola!

Bittersweet

YOU GUYS THEY CROSS-POSTED THIS ON THE AWL, NOW I FEEL LIKE AN EXTRA-SPECIAL SNOWFLAKE!!

*Ahem* pardon me, all done squeeing like a teenybopper now...

null

I loved this, thanks for sharing your story.

GoGoGojira

My father had surgery for prostate cancer ("prostatectomy") in January and they gave my sister and I one of those resturant buzzers, too. Except some hours and hours later, we found out that the battery inside was dead, my dad was out of surgery AND recovery by this time, the surgeon had already tried to call us, etc. WTF? Great job, hospital. You really are more boring than school and screw up a lot. (At least that was all that went wrong, and my dad is doing fine now. Next month he has scans to see whether he'll need radiation, but there's a very good chance he won't.)

OS
OS

This hits so close to home; I'm a daughter who inherited her father's heart condition, but I found out before he did. I was in high school when I had my first episode, but they're unpredictable and I tolerate them well so it took a few years and a few more episodes before I googled my symptoms and diagnosed myself with VT. When I was in university, my dad got sick and was himself, officially, diagnosed. He was in the hospital for 3 weeks and since then has had an ICD implanted and is on medication. It's 2 years later and he's doing well.

I've never told my family. Partly out of guilt (if I had sought treatment before my dad got sick, would his condition have gotten so dire?) and partly from seeing how hard it hit my mom and not wanting to put her through that again (yet). The rest of my reasons are completely selfish. Fear of surgery, fear of the side-effects of the medication, and wanting to keep my independence a little while longer before I have to start going in for tests and check-ups and maintenance. I realize I'm gambling, but I think I've still got the mentality that my youth makes me immortal.

Reading your piece scared me in a lot of ways, but thank you for writing it. I wish your daughter and family the best.

Chicka Boom

I was utterly charmed by the description of your daughter with a 900-page fantasy novel, and my heart broke when I read the last paragraph. That was exceptionally written - I wish you and yours the best.

area@twitter

Thank you for writing this- as others have said it's incredible to read. You're really captured that hospital experience, which veers from terrifying to numbingly boring, with a heavy dose of "lack of control over basically anything". Particularly that doped-up, coming-out-of-surgery feeling, where you're just drifting in and out while sensations occasionally clonk you over the head like loose logs on the tide.
(And best wishes to you and your whole family. Your daughter has an awesome, tough mom to help her through this.)

Money in the Banana Stand

This was an incredible read. My fiance just got out of the hospital last week from a pneumonia that turned into a lung empyema that needed open chest surgery (no rib cracking, thankfully). I was there with him the whole time, but I really had no idea what he was going through. Thank you for helping me help him by giving me a small glimpse of what it must have been like for him.

susanjuj

I am sure that the emotions you felt were intense while waiting for the surgery, luckily you had your husband near you and he managed to give you a sense of security. I took my older son when I went to the gastroenterology NJ clinic, I was so glad he wanted to come with me even if he was scared more than me and I had to hearten him.

jessespencer

A couple of weeks ago, when I stayed overnight at the hospital for a simple procedure I had a roommate that had a teeth grinding at night problem. My husband had such a problem and I bought a special device for him, it is inexpensive but this is the only thing that helped. When I told this to my roommate she told me she heard about this but was not sure if it would help her, she bought the StressGard the second day and got rid of this problem.

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