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  1. K

    Blood in my port

    This happened to me a few times when I've fallen asleep with my iv's running. As long as you were able to flush the line and seal it with the heparin without trouble you should be OK. Mention it to your doctor or nurse that comes and takes care of the line. They may be able to put your mind...
  2. K

    Transplant update....

    Hey everyone! I know I haven't been on in a while but I thought I'd update you all in my transplant journey. I'm about 3/4 through all the paperwork. The next step is waiting for the call to go down to Mayo Clinic, Jacksonville, FL for evaluations and then I'll be added to the list! I'm a...
  3. K

    Tooth is falling apart

    How ironic that this post came up. I did the same thing to my back wisdom tooth a few weeks ago. I'm terrified of the dentist but lately the area is super sensitive to cold and getting on my nerves so I think I'm going to have to go see a dentist soon.
  4. K

    What year were you diagnosed?

    I was diagnosed in 1985 at 4 months old due to failure to thrive
  5. K

    ENZYMES

    I'm on Creon 24s and I take 13 with meals, 8-10 with snacks. I've been on Creon forever and I never had a problem with them.
  6. K

    In need of Scandishakes

    Oh jeez! Terrie I wish I would've scrolled down further to see your post! My CF clinic's nutritionist ordered me cases of Nutren 1.5 High Calorie Liquid Nutrition. It's made by Nestle in vanilla. They're 375 calories a can. I have so many I could give you as many as you want! PM me or answer...
  7. K

    Does anyone need nutrition drinks?

    Hi all- The nutritionist at my CF clinic ordered me cases of Nutren 1.5 High Calorie Liquid Nutrition. It's in cans and made by Nestle in vanilla. It's 375 calories per can. Let me know how many cans you would like. I just have so many! I'd love to share!
  8. K

    Liver Issues

    I have very elevated liver enzyme levels too but I can't remember what they were. I was put on Actigall when I was 12 and was told I could not play contact sports because of my enlarged spleen and liver. I was also put on a blood pressure medication at that age too but I couldn't tolerate it...
  9. K

    Liver Issues

    I have very elevated liver enzyme levels too but I can't remember what they were. I was put on Actigall when I was 12 and was told I could not play contact sports because of my enlarged spleen and liver. I was also put on a blood pressure medication at that age too but I couldn't tolerate it...
  10. K

    Bloating

    I would ask the Gastro to do an ultrasound to make sure that it isn't fluid build up. I went on for months with distention that got worse and worse until it was so painful. Even if they do an ultrasound and they say it's not fluid I would ask to try a combination of water pills (I have been...
  11. K

    Bloating

    I would ask the Gastro to do an ultrasound to make sure that it isn't fluid build up. I went on for months with distention that got worse and worse until it was so painful. Even if they do an ultrasound and they say it's not fluid I would ask to try a combination of water pills (I have been...
  12. K

    Question for those with ports or considering a port

    I don't access my port myself. I also have a nurse who comes each month for a monthly port flush. I have mine in my chest and I don't mind the location, I don't think I'd get one placed in my arm.
  13. K

    Question for those with ports or considering a port

    I don't access my port myself. I also have a nurse who comes each month for a monthly port flush. I have mine in my chest and I don't mind the location, I don't think I'd get one placed in my arm.
  14. K

    Difference between normal CF cough and infection?

    I understand how you're feeling about calling the doctor a lot, I used to feel the same way. After a while I just told myself that it's MY health and I deserve to feel as well as I can each day and if that means calling him more than usual than so be it. You deserve to feel better!! It...
  15. K

    Difference between normal CF cough and infection?

    I understand how you're feeling about calling the doctor a lot, I used to feel the same way. After a while I just told myself that it's MY health and I deserve to feel as well as I can each day and if that means calling him more than usual than so be it. You deserve to feel better!! It...
  16. K

    Food Stamps

    Food stamps are based on income however if you already receive Medicaid then you shouldn't have a problem getting them. They would use your income information to determine how much they will give you.
  17. K

    Food Stamps

    Food stamps are based on income however if you already receive Medicaid then you shouldn't have a problem getting them. They would use your income information to determine how much they will give you.
  18. K

    Food Stamps

    I'm a social worker and I used to apply for food stamps for my clients. The best advice I can give you is to contact your local Department of Social Services and speak to someone in the Food Stamps department. Each state can vary with how food stamps are distributed. Let me know if it works...
  19. K

    Food Stamps

    I'm a social worker and I used to apply for food stamps for my clients. The best advice I can give you is to contact your local Department of Social Services and speak to someone in the Food Stamps department. Each state can vary with how food stamps are distributed. Let me know if it works...
  20. K

    Massages in the hospital

    I went to get a massage as a fluke and now I go weekly. It really has helped my breathing and abdomen. I get lots of stomach distention and she does an abdominal massage each week. It really helps in reducing the distention. She also does pressure points. It's well worth every penny and I...
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