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.

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.

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.

Surgery and Subsequent Illness

My surgery went well. Very well. I went in on Wednesday morning and I was released Saturday afternoon. Yes I was in pain and discomfort, but no more than I expected to be considering the nature of the surgery. Sleeping was going to be difficult but I was working it out.
My mom went back to work Monday and my sister and niece came over to work on my matted hair and keep me company. Tuesday my friend Steffie planned to come over. I was finally getting my appetite back and I asked her if she wanted to combine our efforts to make sandwiches. I had bacon and tomato, could she bring bread and lettuce? Sure. So she does, and she makes us some BLTs.

A few hours later, after Steffie had gone home, I am in chills but hot with fever. I am scolded by my family for overreacting and being dramatic and they use an old busted thermometer that doesn't read properly just to throw it in my face that I don't have a fever.

That night was horrible. I couldn't sleep. I was in and out of the washroom every hour. In the morning I was feeling awful, like I had the flu. All I wanted was ginger ale and crackers (which was brought to me by a loving family friend). I had been emailing my cardiac team about various ailments and once I spoke of my washroom issues they demanded I get to urgent care immediately.

I went that late afternoon to find out I had a temperature of 102.4

They gave me fluids and antibiotics via IV. I felt better but as soon as they were done I felt instantly shitty again and the fever returned. They wanted to send me to UCLA in an ambulance but because I don't own one of them money trees I declined and my mom drove me. I went to the ER and waited for an hour to be taken back.

The initial thought/fear was that something went wrong with the surgery OR I contracted a bacteria from merely being in the hospital. I was in the ER all Wednesday night, unable to find any comfort. This is also due to the loud, crass and obnoxious son of the man in the bed next to me who visited with his giggly trophy girlfriend until 3:00am, never once lowering their voices in respect for the person four feet away from them.
I was given a physical examine, a CT scan, blood tests, other fluid tests, etc. and finally admitted and taken up to a room by...oh, I think early afternoon Thursday.
I was given an ultrasound, x-rayed and had blood taken from me every morning at least.
Nothing.
They never found anything.

I was seen by OB/GYN staff, cardiac team, a gastrointestinal team, and an infectious diseases team. None of these people found anything, even when I realized that Steffie mentioned being sick too and we put 2 and 2 together with the lettuce and the timing of our mutual illness. She had similar symptoms (I don't know if she ever got a fever)

They broadened their search to include e.coli and listeria - maybe even hepatitis - but still nothing. They had me on antibiotics just as a precautionary but they really didn't know what they were fighting. They kept insisting it must be a virus that just needed to "run its course"
This never sat well with me.
I think they missed something or a test came up incorrectly negative.
Once I was able to break my nightly fevers I was able to go home - Tuesday the 22nd, five and a half days later.

Those were five miserable fucking days, my friends, let me tell you.

They sent me home simply because they had to admit they found nothing and could not treat me. So in their expensive degree wisdom they simply advised me to let this virus "run its course"

Yeah. It's still running its course, nearly one week later. No fevers but I've had some backlash from my heart in the form of sudden palpitations (my coumadin spiked very high at the beginning of this mystery illness and they released me with instructions not to take my coumadin. Bad move)

Truly, I do not feel out of the woods with this illness. I feel like I'm going to either be living with it for a very long time or until they wise up and look again. Which they may very well have to because if this illness doesn't "run its course" by the end of this week I will be going back (as an out patient most likely).

Surgery-wise, I feel stronger and less sore each day. I am sleeping a lot better and feel that I am healing very well.

I just wish this stupid virus/bacteria would go the fuck away.

how to visit someone recovery from surgery 101

NOTE: I wrote this very early upon my first return home, on my phone. It had an error I couldn't correct and I was unable to get to it before I wound up in the hospital again for another 6 days. I am publishing this post now, but keep in mind when it was originally intended to be published.

I am typing this from my bed at home, so cut me slack on errors that normally wouldn't occur. I have been home for about 36 hours and am already being asked by well-meaning friends when they can come and burden their presence on me, er, I mean graciously visit. I realize now there needs to be a list of things people need to be made aware of when visiting a friend (in this case, me) after surgery.

1) just because I am home does not mean I am well. I am well enough to be home, but not well enough to hang out like normal. I am still in pain.

2) don't ask me how I am feeling every 5 seconds. You know how I feel? Like I just had surgery! Save this question for a week or so out.

3) never just swing by unannounced. It's not fun for me.

4) please do not expect me to be a hostess during your visit. Plan to come by on the way to or from food unless we made plans to eat at my place together. Expect to serve yourself.

5) I tire easily. Keep your visit short or I may doze off on you!

6) I just went through a traumatic experience. If you don't want the gory details, be mindful not to ask.

7) at least in my case, anesthesia sticks around longer than I'd like it to. Crying over stupid shit isn't unheard of. Keep the conversation light and don't expect me to watch anything more dark than Care Bears or Pee-Wee.

8) I look as crappy as I feel. Be prepared and don't make comments.

9) don't take it personally if I am not ready to see you. Once I am comfortable receiving guests I will let you know (or make a general announcement)

10) although I'd never make you my nurse, you may have to help me out. Just be understanding and know I appreciate it.