Wednesday, November 18, 2009

Broken down

This is a difficult post for me to write, so I apologize in advance if it's not put together very well. I also apologize for all the negativity.

For the first time in almost a decade, I am in the hospital.

Almost two months ago I started feeling a little ill. In the mornings I'd wake up feeling considerably well, then things would gradually get worse throughout the day and by about 6:00 each evening I had terrible body aches and a full blown fever. I kept putting off going to the doctor because a) I'm stubborn b) I had used all my vacation AND personal time in the weeks leading up to Morgan's birth and for maternity leave, and c) because I felt well in the mornings, each morning when I woke up I was just sure it was THE DAY that I'd be better.

Finally, when I took Morgan for her two month check-up I told my doctor what was going on. She immediately told me I most likely had the swine flu and ordered some chest x-rays to be sure this "bug" hadn't moved into my lungs. Those x-rays revealed a small spot of pneumonia in the lower lobe of my left lung. I was put on oral antibiotics which made me feel okay within 24 hours, good within 3 days, and pretty great by the end of the week. I honestly thought I had caught swine flu and just as it moved into my lungs, but before it could cause any real damage, we found and treated the pneumonia. No big deal, let's just move right along with life. Right?

Last week I realized just how very wrong I was. The antibiotics I had been given were able to get the infection under control just enough to make me feel better, but they never actually killed the bug. Inside my lungs the infection continued to rage. I was admitted last Thursday with severe pneumonia in the upper and lower lobes of both lungs.

When I got here I was unable to walk into the hospital. I had to be wheelchaired everywhere we went. My oxygen sats were sitting at 73, so I was immediately put on oxygen. My FEV1 was 27%--by far the WORST it has ever been. I was experiencing crippling chest pain and was running a fever of 104 degrees. My heart rate was anywhere between 140-155 beats per minute. I was sicker than anyone anticipated, including myself.

I was put into the Intermediate Care Unit (just under Intensive care) for the first few days. Being in the IMCU wore on me quickly. It was embarrassing and annoying to have to ask for help anytime I needed to use the bathroom. By "bathroom" I mean a toilet sitting out in the open about 6 feet away from my bed. I was so incredibly tired, but unable to sleep. I got so sick of being asked if I could stand on my own. I got even more sick of having a nurse pop in every 20 minutes to be sure I was still hooked up to the moniters correctly.

I'm now in the new CF unit. From what I hear it was just opened last week. I keep hearing how nice and new and wonderful it all is. I guess since hospitalization is such a rare thing for me I don't truly appreciate the niceness or newness. To me it's still a boring, lifeless room. A place that reaks of illness. A place that isn't home and will never be comfortable. Most of the nurses on the floor don't seem to have much confidence in what they're doing. I'm not sure if they're new to CF, new to the floor or just plain new to nursing, but they keep asking ME questions that I feel THEY should know the answer to. I feel so out of place here. I don't know any of the hospital staff except the few people I've worked with in clinic. I don't know my way around. I don't know where to go for rehab tomorrow. I don't know the hospital lingo-I had absolutely no idea what a CADD pump was until a couple days ago and I still don't know what my nurse meant when she asked if I want my NS on at night. (I'll have to hit her up about that one.) This just isn't something I do. I'm not familiar with the hospital scene at all.

I miss my husband and baby more than I can describe. My heart breaks a little more each morning when I realize today isn't the day I can go home, and tomorrow won't be either. I feel like I can't get better physically when I'm so emotionally drained. I can't sleep when I miss the warmth and weight of Adam's body on the bed next to me. I can't concentrate on treatments when I'm biting my lip to keep from crying because I miss Morgan's smile. And I almost can't breathe when I realize there isn't an end in sight yet.

This is so hard and I've never felt so alone.


  1. I know how hard that must be. I would hate to know I couldn't see my daughter either cause I was stuck in some dumb hospital. I've never been hospitalized for cf so I don't know the whole hospital scene either. I'm praying you get better soon and feel great when you get outta there. Keep the faith.
    God Bless

  2. I love you Baby Girl!

    Although you're not little like Morgan anymore, you're still my baby and it breaks my heart to see you have to go through these experiences. We may not understand everything, but I know that God does. Although I wish so much that I could fix all your hurts, I am more than willing to lean on Him and put you in His trust and care. Even though I love you with all my heart, He knows far more than I do, and only He can heal the hurts for good.

    I love you,

  3. Oh, Jenny, I know I don't know you that well but I wish there was something I could do for you!

    Don't listen to everyone who says how nice and new that place is... the old 2 East was way better! You're right - these nurses are all completely clueless about CF. I was there for the move, and I spent the last 2 days of my stay literally training all the nurses in what CF was and how to use the equipment!!! Yikes. The clinic staff is great though, and some of the other normal CF staff. I'm sure you have probably met Steve the respiratory therapist already but if not, you will soon... he always has great suggestions about how to improve your treatments and find the things that work for you and make you feel better. (Tell him I said hi!)

    As for NS - I recommend it at night, it helps you keep from getting dehydrated in that desert of a hospital!!! Ugh, I dry out so bad when I am there.

    I really hope you get feeling better soon!

  4. I wish you could have gone to 2E. I hate it when your health care workers know nothing about your illness. It sure inspires a lot of confidence! Like the time a nurse asked me how long I had had CF. Speaking of clueless health care personnel, I have a story about a med student I had this time that I think I am going to write a post about. Someday, when I get around to it.

    The NS is saline. As Cindy said, it is just to keep you hydrated. The more fluid to flush out the antibiotics, the better. The only thing I hate about it is that you'll inevitably have to get up to pee in the night, and then you have to unplug the pump and drag it in the bathroom with you. I am usually on Ambien because I don't sleep in the hospital, so the grogginess and dizziness from the ambien makes getting me and my entourage to the bathroom nearly impossible and I have almost peed my pants more than once.


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