Take Charge!

You always need to be the one in charge of your health. That means not only being in charge of the way you take care of yourself, but making sure the healthcare you’re receiving is right for you.

If you’re not happy with your healthcare and you have the ability to make a change, then do it. You owe it to yourself. Especially if you’re a CFer.

I’ve mentioned in my last few blog posts that I decided to move back to the Pittsburgh area to see if a highly reputable team of CF doctors could help me save my lungs after I felt like I was floundering with the care I was receiving in Florida.

Best choice I could have ever made. Let me explain why:

Florida: The majority of my nurses/aides spoke with such a heavy Spanish accent that I couldn’t understand them and they couldn’t understand me. That makes for extremely long, frustrating days and weeks.
Pittsburgh: Everyone speaks English!


Florida: The doctors refused to let me stay on steroids more than 2 weeks even though they significantly improved my lung function.
Pittsburgh: My new doctors are fine with low doses of steroids indefinitely if that’s what helps. I know it can be dangerous to stay on them for long periods of time, but a month or two could really do wonders in helping me improve.


Florida: Doctors didn’t even attempt to come up with ideas to try to save my lungs. They just automatically pushed for a transplant even though they knew that wasn’t the route I am ready to take.
Pittsburgh: Within one week, my doctors are ordering tests I’ve never even heard of to try to figure out what’s going on with me.


Florida: The hospital rooms in some wings had holes in the wall and mold under the sinks.
Pittsburgh: Clean rooms!


Pittsburgh: Not only do they put a stationary bike in your room to help you get exercise, but you can walk around the floor, you can walk around the entire hospital, you can even LEAVE the hospital. I went out for Chinese food for lunch yesterday with my parents 🙂


Florida: The cafeteria was open for only a few obscure hours per day with hardly any choices.
Pittsburgh: The cafeteria is open pretty much all day long with plenty of choices. There is also a Starbucks, vending machine, and gift shop. On top of that, they gave me little coupons to use every day in the cafeteria so I can get something different than what’s available on my room menu. Options!


Florida: People wake you up continually throughout the night to get unnecessary vital signs. Unless I’m in the ICU, I’m not going to spontaneously combust since the last hour you checked. Nurses turn the lights on and wake you up to change your IVs. Respiratory comes in at 2am.
Pittsburgh: They let you sleep. Imagine that. One of those key ingredients to getting healthy. Nurses know how to be quiet and are talented enough to change your IV in the dark. No one takes completely pointless vitals.


And best of all, my family and friends are close enough to visit when I’m in the hospital!


One thought on “Take Charge!

  1. Great blog Elise…. and agree 100%, my husband Sam and I talk about this subject and the importance of being in charge of your health, health care and being your own advocate, or having someone as your advocate. So great to hear of the improvements, and to hear you’re doing well. God Speed!

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