Wednesday, February 29, 2012
Really on the mend
I've been literally pissing away what ails me ~ taking a metric shit ton of diuretics to assist the grand flushing of my abdomen. It's been going well, though I got off to a rocky start. I'm down to 155 or so - about 20 lbs. since the fluid collected. Dudes, I haven't seen 155 in like...years. If this shit hits the 140s I am going to officially declare all of this was worth it.
Sunday, February 12, 2012
A light at the end of the tunnel
So, last Monday I went and saw a gastrointestinal specialist who took one good look at my poor, deformed body and wasted no time in getting me for a doppler ultrasound (to make sure there was no blockage on the veins & arteries around my liver) and an abdominal paracentesis, which is fancy medical language for WE GONNA TAP YOU LIKE A KEG AT A FRAT PARTY!
Sloshing around with this huge belly for the last few months, I already knew we were going to have to do this manually but holy fuckballs was I nervous. Twenty-two years ago I had my second open heart surgery and the day after I was released from the hospital I "sprung a leak" on my right side where my stitches (from tubes) were. I went back via ambulance and was drained manually - still awake and screaming my head off in massive pain. I believe in out of body experiences specifically due to this event in my life because I have a crystal clear memory of sitting up in a small examining room as a bunch of staff held me down, me with my eyes closed screaming at the top of my lungs as they did whatever the hell they did then to drain me - probably a tube.
The next day I went into full blown tachycardia. One of the first times in my life, so it was still new and frightening to everyone. So you can imagine how my mom and I were having flashbacks like a Vietnam veteran when we knew this is what was going to happen.
The ultrasound went off without a hitch, that was one of the best tests ever done, due mostly to the fact that my sonographer was made of pure awesome (as most are). Come Friday, however, when it came time for my tap, it really took all of my energy to not bolt.
I don't puss out on medical tests easily but I am a big baby when it comes to
1) ANYTHING to do with my stomach, as it is incredibly sensitive
2) Novocaine/skin anesthetic because it is hit or miss if I will have a bad reaction to it
So, I get an IV in because they're also going to be pumping in a solution that will help keep my fluids regular and prevent (hopefully) vertigo and other bad reactions. We wait forever for some blood tests to get in and then I am escorted to the room it'll be done in. My doctor comes in and introduces himself.
Now, I don't normally give out the names of medical professionals I see because I doubt they ever want to be associated with me or this blog but I have to share this with you.
His name is Dr. Moriarty.
No. Fucking. Shit.
You bet I gave him hell. I cackled right in his face and let it be known that my mom and I are life-long Sherlock Holmes fans. He winced, obviously having lived a very painful life full of mockery in comparison to one of the greatest literary villains of all time. I failed to tell him I'd CHANGE my name to Moriarty if I had to taken on any villainous last name. It's a cool name, for one, and second - it's a cool fucking name!
So they shoo out my mom and get me prepped and I am a big bag of whimpering wuss right now. Jose, the assisting tech, could not have been the more ideal individual to be on duty that day. He set his iPhone Pandora station to oldies for me and held my hand good and tight as EVIL DOCTOR MORIARTY (just kidding, he was super nice) stuck me with that goddamn needle, on the right side of my abdomen.
And golly gee, folks, wouldn't you know it? It hurt like a bitch.
There were tears and screams and I'm sure the rest of radiology was wondering if the good doctor was indeed living up to his infamous name. Which I had full intentions of Giving Him Shit For with every crack under the sun but damned if that pain was so scathing-joke-repellent that I just couldn't muster the brain power to ask him how his evil laugh was coming along or if he had pushed anyone off a cliff lately.
Jose was such a trooper, holding my hand, brushing my hair back from my face, and telling me how good I was doing despite being a total pussy. They were pretty amazed I was in as much pain as my ear-shattering shrieks indicated, but yes, folks, hate to admit it - it was that shitty for me. I know it is a walk in the park for some people to go through but not for me.
It was all over within 20 minutes and three liters had been taken out of my abdomen - can you believe it? I weighed 10 lbs more just SIX DAYS AGO! Wow. I instantly felt lighter, emptier, in my abdomen area. After waiting out the minor dizziness I had and having my IV removed, I headed for the cafeteria and ate a feast before heading home.
I haven't been able to sleep on my right side since the procedure and I have been fighting a little bit with my heart in the arena of palpitations but overall I am doing better. Still waiting for my physical form to "deflate" as it were and go back to normal, but I am one giant step closer to being back to normal.
It still really hurts to laugh and sneeze, though, so once those basic human functions are entirely painless I know I'll be at 100%
Sloshing around with this huge belly for the last few months, I already knew we were going to have to do this manually but holy fuckballs was I nervous. Twenty-two years ago I had my second open heart surgery and the day after I was released from the hospital I "sprung a leak" on my right side where my stitches (from tubes) were. I went back via ambulance and was drained manually - still awake and screaming my head off in massive pain. I believe in out of body experiences specifically due to this event in my life because I have a crystal clear memory of sitting up in a small examining room as a bunch of staff held me down, me with my eyes closed screaming at the top of my lungs as they did whatever the hell they did then to drain me - probably a tube.
The next day I went into full blown tachycardia. One of the first times in my life, so it was still new and frightening to everyone. So you can imagine how my mom and I were having flashbacks like a Vietnam veteran when we knew this is what was going to happen.
The ultrasound went off without a hitch, that was one of the best tests ever done, due mostly to the fact that my sonographer was made of pure awesome (as most are). Come Friday, however, when it came time for my tap, it really took all of my energy to not bolt.
I don't puss out on medical tests easily but I am a big baby when it comes to
1) ANYTHING to do with my stomach, as it is incredibly sensitive
2) Novocaine/skin anesthetic because it is hit or miss if I will have a bad reaction to it
So, I get an IV in because they're also going to be pumping in a solution that will help keep my fluids regular and prevent (hopefully) vertigo and other bad reactions. We wait forever for some blood tests to get in and then I am escorted to the room it'll be done in. My doctor comes in and introduces himself.
Now, I don't normally give out the names of medical professionals I see because I doubt they ever want to be associated with me or this blog but I have to share this with you.
His name is Dr. Moriarty.
No. Fucking. Shit.
You bet I gave him hell. I cackled right in his face and let it be known that my mom and I are life-long Sherlock Holmes fans. He winced, obviously having lived a very painful life full of mockery in comparison to one of the greatest literary villains of all time. I failed to tell him I'd CHANGE my name to Moriarty if I had to taken on any villainous last name. It's a cool name, for one, and second - it's a cool fucking name!
So they shoo out my mom and get me prepped and I am a big bag of whimpering wuss right now. Jose, the assisting tech, could not have been the more ideal individual to be on duty that day. He set his iPhone Pandora station to oldies for me and held my hand good and tight as EVIL DOCTOR MORIARTY (just kidding, he was super nice) stuck me with that goddamn needle, on the right side of my abdomen.
And golly gee, folks, wouldn't you know it? It hurt like a bitch.
There were tears and screams and I'm sure the rest of radiology was wondering if the good doctor was indeed living up to his infamous name. Which I had full intentions of Giving Him Shit For with every crack under the sun but damned if that pain was so scathing-joke-repellent that I just couldn't muster the brain power to ask him how his evil laugh was coming along or if he had pushed anyone off a cliff lately.
Jose was such a trooper, holding my hand, brushing my hair back from my face, and telling me how good I was doing despite being a total pussy. They were pretty amazed I was in as much pain as my ear-shattering shrieks indicated, but yes, folks, hate to admit it - it was that shitty for me. I know it is a walk in the park for some people to go through but not for me.
It was all over within 20 minutes and three liters had been taken out of my abdomen - can you believe it? I weighed 10 lbs more just SIX DAYS AGO! Wow. I instantly felt lighter, emptier, in my abdomen area. After waiting out the minor dizziness I had and having my IV removed, I headed for the cafeteria and ate a feast before heading home.
I haven't been able to sleep on my right side since the procedure and I have been fighting a little bit with my heart in the arena of palpitations but overall I am doing better. Still waiting for my physical form to "deflate" as it were and go back to normal, but I am one giant step closer to being back to normal.
It still really hurts to laugh and sneeze, though, so once those basic human functions are entirely painless I know I'll be at 100%
Thursday, January 12, 2012
Taken from the community
I belong to an online group of adult congenital heart defect patients. I rarely put in my two cents or create a topic of my own but I do pop in from time to time, especially when friends of mine post. There was a topic that came up recently - the original content is irrelevant and a private matter I'm not going to hit the spotlight with right now - but the topic, as always, derailed as people started talking about themselves (as we are all wont to do) and bounce from subject to subject.
I had my own thoughts on some of the side-topics that came up, however, I'm one whose eyeball twitches when the discussion I pose goes off topic and I did not want to be a hypocrite and do that to someone else, so I decided to bring it here.
One topic that came up was the idea of dating a person with a CHD.
I was never attracted to the idea of dating another CHDer - I have enough drama in my own exam room, I don't want his as well. I had enough problems just making friends in this community and allowing myself to give a crap & care and all of that vulnerable junk... I didn't have the luxury of Camp del Corazon (though I could have...Loma Linda *glare*) nor friends outside of the hospital with a similar condition. I never grew up realizing how difficult it is to love someone with a serious illness, to allow them into your life and potentially have to lose them. I know, I know, ANYONE we let into our lives has the potential to have a piano fall on their head and leave us prematurely but death from a betrayal in our own genetic code/failure of science or whatever is just shit. Plus, and I know it sounds egotistical, but it makes us dwell on our own mortality and raises fears & questions nobody wants to face.
In the subsequent years following my entering the CHD community (by way of volunteering at camp) I have lost a couple of people. Children, in fact. That shit stings like a wasp with your name tattooed on it.
So it was never even a consideration or a fleeting thought to date another CHDer. I don't want to go through what my mom, my brother, my friends and my boyfriend have gone through. I don't want to feel what they feel when I go to the emergency room. I don't want to have the scary thoughts about losing someone I love. I dealt with that once - when my brother was in a car accident. I never want to look at a loved one in a gurney again.
Another topic that came up is a super sensitive, highly individualized one: reproduction, what we believe is best for ourselves (as individuals) and how it is approached in a relationship.
I'm not saying this to brag but my guy helped me find the strength to go through with my recent partial hysterectomy. I don't believe in risking the chance of a pregnancy - that small chance of a "miracle" just wasn't that alluring to me. I get the smug satisfaction of adoption instead - but I also had the good fortune of having the idea planted in my head as a small kid. I've elaborated on that before so I won't go into it again but the point is I found a guy who didn't give a damn that I won't bear the fruit of his loins. Some other broad can do that for the right price! I don't even want to use my eggs and thank goodness my guy is with me on that front too because genetics are not in my favor. I want my potential future baby to have a fighting chance, health-wise, and if I have to get a little Gattica about it, so be it.
Aside: I resent the word "miracle" being thrown around when describing the ability to give birth. That's not a miracle, that's science. Miracle by definition is an unexplainable phenomena, usually attributed to supernatural/religious forces. The female reproductive system and gestation of a fetus to infant is perfectly explainable. It's an insult to the technological advances of science through the laborious work of scientists, researchers and doctors everywhere that someone would wrap their hard work up in a tidy word like "miracle." Unless, of course, you just mean it as a synonym for "marvel" as in "the miracle of science." I'm cool with that.
I had my own thoughts on some of the side-topics that came up, however, I'm one whose eyeball twitches when the discussion I pose goes off topic and I did not want to be a hypocrite and do that to someone else, so I decided to bring it here.
One topic that came up was the idea of dating a person with a CHD.
I was never attracted to the idea of dating another CHDer - I have enough drama in my own exam room, I don't want his as well. I had enough problems just making friends in this community and allowing myself to give a crap & care and all of that vulnerable junk... I didn't have the luxury of Camp del Corazon (though I could have...Loma Linda *glare*) nor friends outside of the hospital with a similar condition. I never grew up realizing how difficult it is to love someone with a serious illness, to allow them into your life and potentially have to lose them. I know, I know, ANYONE we let into our lives has the potential to have a piano fall on their head and leave us prematurely but death from a betrayal in our own genetic code/failure of science or whatever is just shit. Plus, and I know it sounds egotistical, but it makes us dwell on our own mortality and raises fears & questions nobody wants to face.
In the subsequent years following my entering the CHD community (by way of volunteering at camp) I have lost a couple of people. Children, in fact. That shit stings like a wasp with your name tattooed on it.
So it was never even a consideration or a fleeting thought to date another CHDer. I don't want to go through what my mom, my brother, my friends and my boyfriend have gone through. I don't want to feel what they feel when I go to the emergency room. I don't want to have the scary thoughts about losing someone I love. I dealt with that once - when my brother was in a car accident. I never want to look at a loved one in a gurney again.
Another topic that came up is a super sensitive, highly individualized one: reproduction, what we believe is best for ourselves (as individuals) and how it is approached in a relationship.
I'm not saying this to brag but my guy helped me find the strength to go through with my recent partial hysterectomy. I don't believe in risking the chance of a pregnancy - that small chance of a "miracle" just wasn't that alluring to me. I get the smug satisfaction of adoption instead - but I also had the good fortune of having the idea planted in my head as a small kid. I've elaborated on that before so I won't go into it again but the point is I found a guy who didn't give a damn that I won't bear the fruit of his loins. Some other broad can do that for the right price! I don't even want to use my eggs and thank goodness my guy is with me on that front too because genetics are not in my favor. I want my potential future baby to have a fighting chance, health-wise, and if I have to get a little Gattica about it, so be it.
Aside: I resent the word "miracle" being thrown around when describing the ability to give birth. That's not a miracle, that's science. Miracle by definition is an unexplainable phenomena, usually attributed to supernatural/religious forces. The female reproductive system and gestation of a fetus to infant is perfectly explainable. It's an insult to the technological advances of science through the laborious work of scientists, researchers and doctors everywhere that someone would wrap their hard work up in a tidy word like "miracle." Unless, of course, you just mean it as a synonym for "marvel" as in "the miracle of science." I'm cool with that.
Friday, December 30, 2011
Mystery No More
Tests were reordered.
I got the call this morning that I've been harboring C Diff, an infection of the colon, all of this time.
EXACTLY WHAT EVERYONE SUSPECTED IN THE FIRST PLACE BUT CAME UP NEGATIVE.
Are you fucking kidding me? I could have died from this shit. Like, if we had just gone on all merrily tra la la OH IT'LL PASS RIGHT THROUGH YOU like we've been for the last you know FIVE WEEKS my kidneys probably would have eventually failed and I would've died. Or something. Maybe. They gave me antibiotics in the hospital and I was no longer dehydrated - BUT I WAS AT ONE POINT.
So this is how part of my conversation went with the doctor:
Doctor: "Soooo....about the flagyl I'm perscribing. Uhm. I don't know what your plans are for tomorrow, but this antibiotic doesn't mix well with alcohol. If you consume a lot of alcohol tomorrow there is a good chance your face will turn red, you will break out into a heavy sweat and become nauseous."
Me: "Uhhh...wow. I don't...okay."
Doctor: "Yeah, I don't know what your plans were..."
Me: "Well, it definitely involved drinking but..."
Doctor: "If you have, say, a mixed drink it shouldn't be too bad because it's diluted but if you suddenly go red in the face, you know why."
Me: "Good to know so I won't run to urgent care."
Doctor: "Yeah."
Me: "Well, I wasn't planning on drinking a lot anyway, just one or two drinks..."
Doctor: "That...should be...okay."
As soon as we hung up I informed everyone that I would be starting the antibiotic on Sunday.
I got the call this morning that I've been harboring C Diff, an infection of the colon, all of this time.
EXACTLY WHAT EVERYONE SUSPECTED IN THE FIRST PLACE BUT CAME UP NEGATIVE.
Are you fucking kidding me? I could have died from this shit. Like, if we had just gone on all merrily tra la la OH IT'LL PASS RIGHT THROUGH YOU like we've been for the last you know FIVE WEEKS my kidneys probably would have eventually failed and I would've died. Or something. Maybe. They gave me antibiotics in the hospital and I was no longer dehydrated - BUT I WAS AT ONE POINT.
So this is how part of my conversation went with the doctor:
Doctor: "Soooo....about the flagyl I'm perscribing. Uhm. I don't know what your plans are for tomorrow, but this antibiotic doesn't mix well with alcohol. If you consume a lot of alcohol tomorrow there is a good chance your face will turn red, you will break out into a heavy sweat and become nauseous."
Me: "Uhhh...wow. I don't...okay."
Doctor: "Yeah, I don't know what your plans were..."
Me: "Well, it definitely involved drinking but..."
Doctor: "If you have, say, a mixed drink it shouldn't be too bad because it's diluted but if you suddenly go red in the face, you know why."
Me: "Good to know so I won't run to urgent care."
Doctor: "Yeah."
Me: "Well, I wasn't planning on drinking a lot anyway, just one or two drinks..."
Doctor: "That...should be...okay."
As soon as we hung up I informed everyone that I would be starting the antibiotic on Sunday.
Sunday, December 18, 2011
Slow as moleasses
This recovery has been brutally slow and even painful. I knew to anticipate a couple of weeks, even a month, worth of discomfort, but I am pushing close upon six weeks and my body is still warped and out of proportion. It has kind of sucked the motivation out of me to do anything - work, blogging, going out or basically doing anything other than rotting my brains on TV and Netflix.
The level of discomfort is astounding. Imagine your belly swells twice (or more) the size it is now, stretching your skin as far as it can humanly go, your veins bulging, your organs pushed against the walls inside and all the while it feels like you ate your way through a Las Vegas buffet. Oh, and speaking of eating and drinking, no matter how hungry you are, you won't be able to eat much because of the fullness.
That's what my life is right now.
It's not pretty and it's certainly not at all comfortable.
So if I'm not up on my usual funny and witty banter you know why.
The level of discomfort is astounding. Imagine your belly swells twice (or more) the size it is now, stretching your skin as far as it can humanly go, your veins bulging, your organs pushed against the walls inside and all the while it feels like you ate your way through a Las Vegas buffet. Oh, and speaking of eating and drinking, no matter how hungry you are, you won't be able to eat much because of the fullness.
That's what my life is right now.
It's not pretty and it's certainly not at all comfortable.
So if I'm not up on my usual funny and witty banter you know why.
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