Monday, September 17, 2012

"I didn't choose the hospital life, the hospital life chose me"

In the past week or so, a few people have asked me what exactly goes on while I'm here in the hospital. I realized that while I'm very open about having CF, I haven't talked much about what I actually do in the hospital.

Most people probably picture me lying around all day eating Bon Bons and watching TV for two weeks straight, but that just isn't true, friends. It's Netflix, not regular TV. And I prefer sour gummy treats over Bon Bons any day of the week.

For anyone who might be wondering, here's a little bit about what hospital life is like.

Respiratory Therapy:

Usually sometime between 7:30 and 8:30 am, I'm awakened by someone saying, "Jennifer? I'm so and so from Respiratory, here for your morning treatment."

They do a quick check of my oxygen saturation and heart rate, then listen to my lungs with a stethoscope. After that, I get hooked up to my Vest. The Vest is, well, just that - a big vest connected to a machine that inflates with air and pulsates at different speeds. The purpose of The Vest is to shake the mucus in my lungs free, making it easier to cough up.

(CF causes thick, sticky mucus to build up in the body, and that mucus makes a perfect breeding ground for bacteria. If we are unable to clear the mucus out of our lungs, they become a very easy target for infection.)

At the same time the Vest is going I inhale a few different nebulized medications, some of which include Albuterol (to open the airways), Pulmozyme (to break up that nasty mucus), and Hypertonic Saline (which draws fluid into the airways, again - to thin the mucus). I do the same treatments at home, usually twice a day. Here in the hospital, I do them four times a day.

Morgan has loved the "jiggly vest" since she was a baby

Pulmonary Rehab:

Pulmonary Rehab is really just a fancy term we like to use for "exercise". Each day I workout for half an hour to get my blood pumping and my lungs working! I usually walk/jog on the treadmill or ride a stationary bike, and every once in a great, great while I'll do a little weight lifting. (Believe me when I say it's just a little. I have the upper body body strength of a kitten.)

The Rehab technicians (I made that up, I really don't have a clue what their job title is) are really great about helping find the best and most beneficial workout for each individual, and they also give great tips and advice about how to maintain a good workout routine at home.


IV Therapy:

While in the hospital, I'm treated with multiple IV and oral antibiotics. The combination of meds changes from time to time, depending on what strain(s) of bacteria my lungs are currently culturing. I'm hooked up to something called a CADD pump that pumps medication into my body throughout the course of the day. I'm hooked up the the CADD pump 24 hours a day, except when I get disconnected to shower or they stop infusion to give me a different antibiotic (hung on an IV pole).

The CADD pump and medication are both kept in a small bag that is not only conveniently portable, but also doubles as a super hip fashion accessory.... especially when worn fanny-pack style.

I'm not sure if you can tell, but I'm totally "smizing" in this picture.
Tyra would be proud.
 

My meds are administered through a port -- a medical device implanted under the skin (usually the chest) that provides long-term venous access. I got my port last year and I haven't experienced a single moment of regret. In fact, I'm strangely proud of my port and chances are, if you know me in person, I've probably made you touch it.


This is what my port looks like when it's accessed. The orange stuff
is some sort of hypoallergenic something-something, but I still end up
with a pretty wicked rash from the adhesive.

Random Tests:

PFT's (Pulmonary Function Tests) are done the day I'm admitted, one week into my stay and then again on the day I'm discharged from the hospital. Blood labs are drawn on the day of admittance, then several times throughout my stay to check drug levels.

(Side note: they can never send someone in to draw my blood at a decent time, it's always between the hours of midnight and 6:00 am. I realize a lot of this has to do with the time that my medications are administered, but still, it's annoying. I'm not a fan of being woken up at any hour. When someone is waking me up to stick a needle in my arm, I'm even less pleased.... and oftentimes incredibly confused. I'm fairly certain the gentleman who came in to draw my blood last night/early this morning thought he'd walked in on an exorcism. I woke with a start when he flipped on my lights, then let out a hideous moan/roar as I stretched and rubbed my eyes, angrily mumbling something about my sheets being on fire. If you think I'm dramatic when I'm awake, you should see me when I'm still half asleep.)

Since I'm usually in the hospital for 10-14 days, it makes sense to take advantage of my time here by taking care of any other tests or appointments that may be necessary. My doctors will frequently schedule things like Dexa Scans, glucose tolerance tests, hearing tests (some of the antibiotics are known to cause hearing loss, just one of the many fun side-effects) or visits with the ENT.


Visitors:

One of my very favorite things about hospital stays are the visitors I get! Being in the hospital gives me the perfect opportunity to catch up with friends and family members who live nearby and I don't otherwise have the chance to see very often.

And believe it or not, if you're in the right company and know where to look, you can actually find some pretty fun things to do in the hospital!

I'm not really sure how to
explain this one...
A moment of weakness, maybe?

Morgan and my sweet nephews


Three of my cousins that I grew up with all came to visit.
We were going for a somber/slightly creepy look.
I think we nailed it.

IV pole races!
(This was taken during one of my
stays earlier this year.)
 

SUPERMAN!!!
 
Watching helicopters
 
Morgan asks to see them each and every time she comes to the hospital
 

Cruisin' the hallways with my little love

(I think it's important to note that while I do try to make the best of it, the hospital is not all fun and games. I don't want to diminish in any way the struggles that other people are going through here. Usually when I come in, I'm sick enough that the first several days are spent in bed while my body tries to heal. I'm fortunate enough that I usually respond very well to the medications and can get back on my feet by the end of the first week.
 
Then there are times like this one that I feel pretty darn good even when I'm admitted, but my PFTs have dropped enough that I need to come in for treament before it gets ugly. It's times like these that this place is a little less scary and I get to experience the fun parts of being in the hospital.) 

7 comments:

  1. Maintaining that positive outlook, trying to have some fun, and making the most of it while there, must certainly go a long way toward regaining your better health.

    Glad I wasn't the guy drawing your blood during that early morning hour after having just seen "The Rite". :>)

    Hope you're out of there soon and feeling much better.

    Regards,
    Larry (GA)

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  2. Okay - how bizarre is it that your pictures make me the tiniest bit... nostalgic? It's pretty strange how much the hospital becomes a PART of it. Even though I hate being admitted, I find myself missing it (mostly the people) every now and then when I'm gone. I had to go up after my last clinic visit to find Marian (RT) and tell her about my pregnancy, since we've had lots of long talks about infertility. It was awesome to see everyone so excited. :)

    Also, about the rash with the dressings - I'm horribly allergic to adhesive too, but I have learned two things that help. First - make sure they use the opsite 3000 instead of the tegaderm. Ask for it every dressing change. Second - most nurses actually don't know this, and I learned it from a home infusion nurse - but you have to wait several long minutes between the time they put the chloraprep on, and the time they put on the dressing. Apparently, most nurses put it on before it's 100% dry, and something about the chloraprep actually has a chemical reaction with something in the dressing which makes the allergy much worse. I've actually ended up with open, bloody welts before! So make SURE that they give it an extra minute or two past what they think is necessary before slapping the dressing on. Todd got lessons from the same home infusion nurse and he does it right now, but last time I was there, nobody else knew about this.

    Anyway - I still have rashes even after doing those two things, but it at least makes it somewhat better. And I don't get bloody welts, at least!

    I'm glad that you're almost home. :)

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  3. Wow... that was a LONG comment, sorry!

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  4. Love the makeout sesh with Spiderman lol! Actually, I loved this whole post! I too get wicked (oozy, blistery, nasty) rashes from basically anything they can possibly put on my skin when I get a PICC (no port yet). And Cindy, I am SUPER allergic to chloraprep...like break out the second it touches my skin...sigh!

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  5. Sorry to hear you're in. However, you look really well and model-hot. Hope your husband doesn't get jealous of that remark, though he really should kick the living daylights out of the Spiderman statue. Get out of there soon.

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  6. I totally loved this post! I love how you showed how fun the hospital stays can be while also explaining how serious they can be as well. I'm so glad you respond well to abx, and it looks like your stay hasn't been too terribly bad. I hope you get to come home very soon!

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  7. I love this blog, like I always love all your blogs! Anyways you sound just like me while I'm at the hospital. I think because it was always home away from home for me, it's easy for me to go in, I don't mind it for the most part. I too find myself missing it (mostly the people as someone else said) I LOVE my nurses and staff that take care of me, their my hospital family. I'm totally sharing this on FB by the way :)

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