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Guest Post: Coping with Long-term Hospital Stays

First off, big shout out to my good friend (from real life! I have real friends!) Jerseysjov. And to also start with, she will be doing a walk for the American Heart Association (an organization she is closely tied to, as you’ll see below, she recently had a heart transplant and donated her old heart to research). You can learn more about the walk, find a walk near you, and make a donation on the AHA Heart Walk website. San Diego people – the SD walk is on September 13 at Balboa Park!

Here’s a throwback from sophomore year of college (her blog is anonymous, so any pics of her face will have a little black box over her eyes):

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She’s one of those people who I haven’t seen in a few years but I know that if we met up, it would be like things never changed. Not only is she an incredible person with an awesome sense of humor, and she’s also the ultimate package (smart and hot), but she’s seen some shit. Like, legit, been through some crazy stuff.

In her own words:

Last year I got sick. Really sick. Really suddenly really sick. House style sick. I spent four days throwing up everything I ate or drank, then went to the local ER after fainting at home due to what I thought was just crazy dehydration. I passed out in the waiting area at the ER (my boyfriend said it looked like I was having a seizure, but when I came to I had no post-seizure-like symptoms), and they zipped me back to see what was going on. The last thing I remember is telling my boyfriend how scared I was, and looking up at the several IV fluid bags they hung as soon as I came back. I woke up almost two full weeks later in a specialized ICU in the city hospital attached to life support systems.

Turns out the tummy bug I had got a little cocky and decided to take a walk to my heart. The virus attacked my heart and my own immune system in turn attacked both the virus and the infected tissue. This caused my heart to swell so much in my chest that it could no longer pump blood to my brain. This is called viral myocarditis; any viral infection can take this route, but it’s very rare: the hospital where they sent me is one of the top cardiac centers in the country and they see fewer than a dozen cases per year. Typically, patients who experience viral myocarditis get very sick very quickly and recover just as fast.

After a few weeks of waiting for my heart to “wake up,” my doctors and I realized this wasn’t going to happen for me, and I was put on the heart transplant wait list. And there I sat, tethered by four 4-foot tubes of my own blood to machines that were serving as my circulatory system until 6 am on November 14, 2013, when I went down to the OR and got a stranger’s heart stuffed in me.

yeah hearts yeah

The time I spent trapped in the hospital, July 31 – December 2, taught me more about myself and my family than I’d learned in the previous 25 years. It galvanized my no-nonsense, take-no-prisoners attitude. I leaned heavily on my sense of humor, and tried to find a way to make myself and my nurses laugh every day, even if–especially if–that laughter came after an hour or more of despair. I found out who cared enough about me to send me Facebook messages, text, call, Skype, or visit. I found out who couldn’t be relied on to do any of those things. I felt alone. I felt loved. I experienced more anger, confusion, excitement, depression, relief, fear, and hope than I thought possible.

The hardest thing to accept was that nearly dying saved my life: during a biopsy of my “native heart,” which I had signed off to let them have for research on myocarditis, they discovered I had a previously undetected genetic disorder called ARVD. This disorder causes the walls of the right side of the heart to thicken and eventually shut down, causing in many cases sudden death. This was why I didn’t “bounce back” the way a healthy young person should have from the myocarditis, but at the end of the day I’d rather have a transplanted heart that guarantees I’ll wake up tomorrow than the one I grew up with that might have killed me all the way out of nowhere one day.

still got her sweet sweet cleavage

I’m still at home, I suppose you could say I’m “in recovery” even though I would have gone back to work had I not lost my job when I got sick and then felt too overwhelmed and anxious to get back on the horse. I spend my time puttering around the house, reorganizing the pantry and talking to my brother on gchat. I honestly don’t spend a lot of time thinking about the longest, most difficult 4 months of my life; I’m working hard to make sure my life isn’t all about my heart transplant, but if you’re curious I’ll sure as hell talk your ear off! My hospital social worker has put me in touch with a few other transplant wait-listers who requested to speak to a past recipient, and I’m more than happy to share my story with them and my friends.

making the best of a bad situation sunglasses

That’s how this post came to be. My social worker asked me to give her some anecdotal data for a presentation she is giving about coping with long-term hospital stays. In our lifetimes, we’re all going to be involved with someone who has to be in the hospital for a not-fun reason. It’s a stressful situation for anyone, and I’d like to share some tips on how to alleviate that stress and otherwise bring a little sunshine to a pretty dismal situation.

The absolute number one thing you can do is keep in touch.

The days in a hospital are very long and often filled with unpleasant or invasive tests. Having a social outlet kept me feeling like a human and not just a failing heart. If you set up a Skype date or a visit, do your absolute best to keep it, since that phone call/video chat/hangout might just be the highlight of a patient’s week. I told so many people that they could come visit me any time, and the vast majority didn’t take me up on it. I don’t have hard feelings, since I know hospitals aren’t the most fun places to chill, but I do have an extra special nook in my new heart for those people who took time out of their day to come see how I was doing.

surprise visit from college friends

Remember that your loved one is and will always be more than their illness/injury.

Bring them little activity-presents they’d like: I went through crossword puzzles like tissues, and spent a long time picking at a cross stich pattern that I’m still not finished with. If allowed, bring in a special snack to share. You don’t even have to spend any money: send them links to articles they’d enjoy reading, text them a dumb selfie to make them laugh, bring in a blanket or small piece of art from their house to make their room more like home. And don’t underestimate the power of a little nail polish!

bad news bears toes

Tell jokes, discuss the news, talk about books- basically chat about anything that isn’t the hospital stay.

I was so desperate to mentally escape my situation that I even accepted an offer to be visited by two football players doing some kind of outreach/goodwill thing despite never having watched an entire professional football game in my life. There were days when I was ok with explaining my wacky machines and what the plan was for the future, and there were days when I couldn’t bear the thought of having to tell someone yet again that there was no way to predict when I’d be home. I preferred hearing about what my friends and family were doing with their own lives, rather than have to rehash my shitty life yet again. I still distinctly remember the first conversation I had with a friend where my heart wasn’t mentioned at all and how great it felt to be able to help someone instead of feeling like the problem.

met some football players

However, you also need to recognize that your friend is probably experiencing the worst day/week/month of their life, and if they want to feel bad, let them feel bad.

On the days when I was upset, in a particularly bad amount of pain, or just not fucking feeling it, I would be bombarded by motivational speeches by everyone who walked through the door. My particular situation sucked, but it wasn’t that dire; I knew that I wasn’t going to be there forever, but some days it felt like I sure was! My hospital stay was longer than some jobs I’ve had, so comparatively it was one of the most seemingly-endless experiences of my life. Being told “one day this will be a bad memory” didn’t help. “This will all be over before you know it” is equally unhelpful. Instead, reminders of where I came from would sometimes boost me out of a funk–“3 weeks ago you couldn’t walk two laps and now you do that twice a day,” “the swelling has gone way down; you’re looking more like yourself every day.” Realism beats out platitude any day of the week, but if it’s looking grim and there really is nothing good to say, don’t talk about it.

Take care of yourself!

This means eating well, getting sleep, and drinking plenty of water. This could help you prevent illness and injury, and it means that your hospitalized loved one will have someone they can count on. My family ran themselves ragged the first month I was in, and I spent a few lonely weeks while they were home recovering from colds, flus, and conjunctivitis as I was in isolation and couldn’t be exposed to those germs. Actually, my dad came in with his double pinkeye, but he was under the impression that his germs wouldn’t rub off on me…which brings me to a related point: take care of yourself mentally! I can’t thank my social worker enough for her work with me, and my immediate family all went to professional counselling with the exception of my father. Can you guess who’s still holding on to the grief and stress? It bothered me to see my loved ones looking so terrible, and when they perked up, I did too.

I hope you never have to use my advice, but odds are you’ll get the cosmic short straw one day or another and I hope when you do you’re able to prevail. Take it all in, but at the end of the day you should let your loved one run the show. Come into their circle with love and warmth rather than trepidation and anxiety and see where that takes you. If they want to cry, cry with them. If they want to laugh, laugh with them. If they’re screaming their face off in the middle of a steroid-fueled freak-out, validate that what they’re feeling is real and that it’s okay (but I would recommend staying out of arm’s reach).

I’ll never have my old life back, but this new one is shaping up to be pretty sweet.

heart christmas ornament

 

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Thank you again, Jerseysjov for taking the time to share your story. Check out her blog or follow her on Twitter to fully appreciate her ridiculous (translation: amazing) sense of humor and how sarcastic she is (basically we’re soulmates).

Did she miss anything? How have you dealt with friends/family that have been in the hospital long-term? If you’ve experienced something similar, what did you find helpful?

2 thoughts on “Guest Post: Coping with Long-term Hospital Stays

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