Search results

  1. J

    Dating another CF person

    I think about how I feel when I'm sick. Then I think about living with someone who also feels this bad, plus is going to get me sick too. So there you both sick unable to wash the dishes, do the laundry, cook dinner...... so who really helps when you are sick? You have two people in one house...
  2. J

    Immunosuppressant meds

    I was on methotrexate for about 6 months. I didn't notice a difference. My cf dr was actually curious to see if it would help reduce my lung inflammation... That could have been nice
  3. J

    best friend of over a decade is declining...

    As others have said we've all been there. Pretty normal thing to go through at her age. Its hard because everyone around you is planning for their future and ours is really uncertain. People being pushy made me more resistant to taking care of myself. She has to kind of figure this out on...
  4. J

    MI clinics--Any experience

    Does dr Simon see kids? My impression was that he was just adults and that you would be at Motts children's hospital if you were in Ann Arbor as a kid. I see him as well and he is very good! i make the drive in about 2 hours. it is only a pain when we decide to admit me and I have to wait for...
  5. J

    MI clinics--Any experience

    Hi, welcome to Michigan!! i think it depends on whether she is seen at the adult or the peds clinic. i live in GR grew up going to that clinic and had a really good experience with dr schuen (sp?). He was awesome. When i transitioned to an adult they went through a few adult docs before...
  6. J

    Could my new home be making me sick?

    I got really sick once due to mold in a rental. Seemed like a nice place but the mold was in the crawl space. I wasn't ever in direct contact. If I were you I'd try to stay with parents or a friend for a few weeks. If it really is the house, you should feel better in a few days with the...
  7. J

    need ideas for help gaining weight for my lil one.

    Maybe ask your dietician about scandishake. It's similar to carnation instant breakfast but twice as many calories. maybe check out there is an faq on the right side with recipes. Not sure how many are kid friendly, but gives you some ideas.
  8. J

    Motivation in the Morning

    I know sleep is precious, that we don't want to short ourselves on that, but I get up a bit earlier. This gives me the opportunity to recover and relax after my fits, to sit and wait for 20 minutes til I can push myself back to my daily routine. The worst is having to sit down in the shower due...
  9. J

    Cf fund raisers- do you go??

    I've always been told we can't go to cf fund raisers, that it can put you in contact with others and spread bugs. Do you go? there is one my friends are interested in going to. It's never happened before where they were interested, so it was never a big deal. do they get to go out and have...
  10. J

    Anyone else have trouble with RT's while in hospital

    My hospital does it that you get cpt once a day, and have to vest the other times. i have to say I respond much better to cpt. I need those breaths between the pounding where you breath out and they push on your chest and vibrate their hands. It is actually the only thing that makes me...
  11. J

    I thought you were a smoker

    Most people ask me as a joke if I need another cigarette... (Mostly 30-40 year old guys, the first time we meet) my my favorite is to smile and joke back... Oh no, just dying of a lung disease. shuts them up super fast and makes them feel bad. Then I just laugh and tell them it's no big deal...
  12. J

    3 Year Old Just Diagnosed - Help!

    I'm another one raised on applesauce. maybe try ice cream? And tell her not to chew it, take small bits of the food and swallow
  13. J

    Advice please-girlfriend with CF

    Hi, just thought I'd put my 2 cents in. Im a 32 year old female with cf, and single, so I might have a decent perspective on how she might feel. just talk to her. Have an open and honest discussion. Ask your questions, tell her it scares you. The thing I hate most is when guys try to...
  14. J

    Parents of ADULTS with CF

    Just wanted to say thanks to all you parents. While im 32 and out of the house, when I have an exacerbation, I still rely on my parents for their support. i know we probably forget to tell you thank you, and we probably don't think about how worried you still are about us. so thank you. im...
  15. J


    It is also important to remember that if your dad isn't a carrier, then there is no way for you to have cf. Even if your mom does have cf.
  16. J

    First PICC line ever -- panicking

    Oh yeah- you gotta remove that dressing yourself. That can be the worst part, but if you do it yourself it doesn't hurt as bad. Glove up and get in there ( with nurse supervision of course)
  17. J

    First PICC line ever -- panicking

    For showering I use seran wrap and medical tape. Just wrap the arm upend tape the top and bottom. You kinda stand funny in the shower to keep the arm out from under direct water. My home care always offers different types of wraps to use to cover up the arm. I'm always a bit nervous for...
  18. J

    Was it hard leaving home?

    I had a hard time going away to school. I was not far from home. Through no fault of my own I got sick twice. In one 18 week semester I spent 4 weeks in the hospital and probably 5 being sick. Just plain bad luck. I moved back home a few semesters later, and stayed there after graduating...
  19. J

    Can someone explain to me health insurance costs for CF employees for employers?

    Re FMLA: You certainly don't have to specify that it is cf. Your employer is going to ask you to have your doctor full out a certification. You can find that certification on the department of labor website. All employers use a form very standard to this. It's going to ask a bunch of...
  20. J

    Can someone explain to me health insurance costs for CF employees for employers?

    I think it is a lot of fear mongering that you would be fired for your high cost to the company. I work in HR. The last thing we want to do is walk ourselves into a lawsuit that would come from that sort of action. Your employer is going to know. As soon as you fill out FMLA after being...