Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Recent content by lilywing

  1. L

    Enlarged spleen and low platelets

    In additon to CF, I have an auto-immune disease that causes my body to destroy normal healthy platelets. It's called ITP (idiopathic thrombocytopenia purpura). I have had chronic, critically low platelet counts (under 20) for the last 13 years, and bleeding is a huge issue and concern with...
  2. L

    Two Carrier Parents

    I often wonder about this very question. How do parents know whether they, themselves, have CF unless they are tested for ALL the mutations? I wonder too, because my dad has suffered with digestive problems his entire life, and my mother has sinus issues.
  3. L

    Are you a pro-pill popper?

    I am most certainly not a pro-pill popper! I have a strong and violent gag reflex, and after 34 years, I still have a really hard time!! It's actually kind of embarassing lol
  4. L

    any parents out there dealing with CF adult children that have given up

    twentythreeyearsandcounting, I sent you a private message :)
  5. L

    Private messages

    Thank you, Ennio <img src="i/expressions/face-icon-small-smile.gif" border="0">
  6. L

    Private messages

    Thank you, Stacey. I did "uncheck" the box for the last message I sent. And I have zero messages in the box, so everything is gone. How do I send Ennio a message?
  7. L

    Private messages

    When I click on my Private Messages, there is nothing there? Where did my messages go?
  8. L

    Have you ever received PT in a hospital?

    I get chest physio therapy three times/day from a physio therapist while in hospital, every single admission. Is this a Canadian protocol? I don't know. From what I understand, different countries have different plans of treatment?
  9. L

    Do your hands wrinkle excessively when you swim?

    I asked my CF doctor about this years ago, and she told me that it happened because I was depressed! hahahaha I did my own research and learned about aquagenic wrinkling of the palms.
  10. L

    Pneumothorax: To fly or not to fly?

    Thank you for all your input! I have canceled my trip. One contraindication of any pneumothorax is flying, and the recommendation is to wait for 6 weeks after a pneumothorax has completely resolved. It sucks!! If I was travelling within Canada, I might have considered it more, but I can't...
  11. L

    Pneumothorax: To fly or not to fly?

    I am in hospital now with an exacerbation as well as a "small" pneumothorax. Over the last 9 days of this admission, the pneumothorax seems to be resolving! Without the aid of chest tubes!! In 13 days, I am scheduled to fly from Calgary to Colorado to attend a medical conference. Can I/should I...
  12. L

    Dried out hands

    It's called aquagenic wrinkling of the palms.  And it is a CF thing.  Although the doctors at my accredited CF clinic are clueless about it.  They told me it might be a symptom of depression l o l
  13. L

    Dried out hands

    It's called aquagenic wrinkling of the palms. And it is a CF thing. Although the doctors at my accredited CF clinic are cluelessabout it. They told me it might be a symptom of depression l o l
  14. L

    Dried out hands

    It's called aquagenic wrinkling of the palms. And it is a CF thing. Although the doctors at my accredited CF clinic are cluelessabout it. They told me it might be a symptom of depression l o l
  15. L

    Bowel cancer and CF

    I don't know what to say but that I am so sorry you are going through this. I have read your posts before, and felt useless to respond. Now I just want to say that I am thinking of you and praying for you and your daughter xo
Top