Cystic Fibrosis Forum (EXP)

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  1. R

    PICC Clot

    Hi everyone. I got a PICC in mid-November. Shortly thereafter I was diagnosed with a clot in my arm (long and skinny from inside my bicep to shoulder). I have been on Lovenox shots since. Tonight, my clot arm started to ache. When I took off my shirt, I noticed that my veins in my shoulder were...
  2. R

    Cayston and Coughing?

    Hey everyone, I started Cayston on Tuesday. I have been on it every other month since August (so this is my third on month) and had been on it for 2-4 week stints before that. I was on TOBI every other month from October 2011-August 2012. This time, Cayston is making me cough so hard I'm...
  3. R

    Hemoptysis Right After Discharge

    I just coughed up about four tissues full (no clue how much) of pure blood. I was discharged after two weeks this morning. I was on Tobra and Ceftaz. I'm on Lovenox (blood thinner) for a clot. It has lessened now and is every time I cough but not nearly as much. It is still pure, no sputum. I...
  4. R

    PARI eFlow Questions

    So, my nebs are taking FOREVER. I'm literally nebbing for an hour and a half twice a day. When I go back to school in September, that's quickly going to turn into either non-compliance or no sleep. Neither of which will end well in the sick fall season. I asked my doctor today (via phone) if he...
  5. R

    Not Feeling Better

    Hi guys. So, I was admitted for a tuneup on the 12th, was in house until the 16th and I've been doing the IV abx at home since. I'm on Ceftaz 3 times a day and Tobra once a day. I'm also on oral Septra and just started hypertonic saline twice a day. I'm on half an hour of vest three times a day...
  6. R

    Asking People to Visit?

    I'm currently in the hospital, on isolation so I can't leave my room, and I'd love for people to come visit me, but it feels like a huge imposition asking people to do so. I've kind of joked with one person, being like "I'd love you forever and ever if you visited me!" but I don't want to flat...
  7. R

    TOBI and Hormones

    Hey everyone, So, I'm on month on/month off of TOBI, and I swear it messes with my hormones. I break out on it (for the entire month, it's a great self-esteem booster...), I'm way more emotional for the first week, and my periods are really abnormal (coming every 3 weeks; they had been normal...
  8. R

    Chest Tightness, Thoughts?

    Hi guys, So, I've been having some crazy bad chest tightness since early April, but my PFTs are AWESOME. My doc wants me to do a cleanout before school starts, but said she would consider doing it after school gets out if I wasn't feeling better. She didn't want to do anything when I went in...
  9. R

    Any Ideas?

    So, here's the story. I was hospitalized for the first time in October, in my first quarter at college, for two weeks. I was the healthiest I've ever been after I finished the two weeks in, and didn't miss a single day winter quarter for sickness. Then, spring quarter came, and I caught...
  10. R

    Enzymes and Malabsorption?

    Hi guys. I'm sorry if this is a stupid question. I'm 19, and have been on enzymes since I was diagnosed at age 2. I'm on Zenpep now, 5 with meals and 2-3 with snacks, and have been for a couple of years. They've always been good at keeping me feeling good. I take Miralax once a day, 17 grams. I...
  11. R

    Hospital Tips

    Hi everyone. I'm writing a blog post of 100 tips for the hospital. Does anyone have tips? Anything, from food to doctors, just anything? 100 is a lot. <img src="i/expressions/face-icon-small-smile.gif" border="0">
  12. R

    Coughing Up Blood After Prednisone

    Hi, <br>Here's the story. September 18th, I coughed up blood for the first time in recent memory. I was freaked out, and called my clinic the next morning, who prescribed me Septra/Augmentin oral abx (2 weeks) and a 6 day burst of Prednisone to stop the bleeding. I did, and it stopped, by...
  13. R

    Tuneup Time?

    I recently moved from a smaller CF center to the UW Medical Center in Seattle. I've been on and off oral antibiotics since March, including multiple month or 2 week treatments of Cayston, and a ton of Septra, Augmentin, and then, recently, a Prednisone burst, then another one right now, all...
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