Search results

  1. S

    I am not going to sit back anymore.

    Ok. My only child, my daughter Suzie, is 25 years old. She was diagnosed at 11 years old. We just learned of her mutation about a year ago. We always knew one was the Delta 508. They have finally found the other but they said no one else has it. And it does not have an easy name. I will...
  2. S

    As if CF wasn't enough

    My heart breaks for everyone with CF and any other disease/condition that takes so much away from their life. My daughter is 24 with CF, diagnosed when she was 11. No one else that we are aware of in my husband's or my family has had it. My Mother was diagnosed back in February with Mantle...
  3. S

    Anyone else with bad nausea?

    Hello Amy and thank you so much for your idea. We will try ginger tea with honey and see if that works. I treasure every answer from each person on here, because many times we all know better than the Dr's do. Thank you!
  4. S

    Anyone else with bad nausea?

    Thank you so much for the reply. They did put her on an anti-nausea pill and you are right, they don't do much. And yes this does certainly suck! Thank you so much for your reply.
  5. S

    Anyone else with bad nausea?

    Thank you for the reply! When she coughs it turns into gagging. She cannot drink plain water because she says it "mixes with the taste of the sputum" and makes her gag even more. She rarely vomits, but is gagging a lot and can't seem to talk or get her breath afterwords for a few minutes...
  6. S

    Anyone else with bad nausea?

    My daughter is 24 and has CF. We know the one mutation is the Delta 508. The other is a very long sequence of letters and numbers and no one else has it. Lately she has become extremely nauseated. She has not vomited, but she does gag. Any help at all would be sincerely appreciated...
  7. S

    Worth bringing up?

    Wow......... Someone else who was told they were overprotective. My daughter who is now 24 was not diagnosed until age 11. And it was only because of my insistence to have her checked for allergies. Her regular Dr. continued to tell me it was "just allergies" and to give her Robittusun DM. I...
  8. S

    Please help me understand daughters mutations

    THANK YOU Teri! Only one reply but a very informative one. You have no idea how much I appreciate your time. If you or anyone else ever hears of anything that could make me understand her mutation better please let me know. Thank you again Teri!
  9. S

    Please help me understand daughters mutations

    We found out last year my daughter's mutations. No one, according to them, has her specific mutation. Here is what it said: 869+1 869+4 delGTAA insACATTATT 1521 1523 delCTT (p.Phe508del) Legacy Delta 508 Sorry I know this is highly confusing. I got it that...
  10. S

    As if CF wasn't enough

    I have heard of neuro-muscular disorder. Exactly what is it and how is it diagnosed? I have heard that many people with CF have it. suziesmom
  11. S

    Infant diagnosed-Confused-Hurting

    Hi. I know how you are feeling right now. I had my daughter a month away from my 32nd birthday. She was not diagnosed until she was 11. The pain and anguish we went through was all-consuming. It is but a memory now. She is 24 years old and besides a few treatments (vest/pulmozyme/cayston...
  12. S

    Has anyone been diagnosed post 30 years old??

    My daughter was diagnosed at 11 years old. I told her doctor that I wanted an allergist to see her. He said it was'nt necessary but he gave me the referral. Before that, he continuously told me to give her Robitussin DM, and that it was nothing but allergies. I took her in to the allergist...
  13. S

    The type of bacteria growing in CF lungs correlates with how viscous the mucus is

    I love your posts and comments Printer. Keep them coming please .
  14. S

    HELP! I'm producing way too much mucus!

    Caden, You are most welcome for the reply. I am sending many well wishes your way. And if I don't hear from you before your 21st............ Happy Birthday to you!
  15. S

    HELP! I'm producing way too much mucus!

    Hi Caden. My daughter is 24 with CF. A couple of times she has had a "mucous plug" where she has the same symptoms as the ones you are describing. She has been on Tobi before but for her it made her very nauseated and she now does Cayston instead. Be aware, nothing works for everyone and you...
  16. S


    I agree with Bill. You know what, we ALL can get upset from time to time . No worries Pat.
  17. S

    Something a relative said to me at a wedding -- cried myself to sleep

    To Welshwitch: I think the comment that your cousin's Dad made was meant to be a nice one, however I too would have taken that comment to another level and yes I would have cried! I do not have CF, my daughter does. She will be 24 at the beginning of next year. I do think that we all need to...
  18. S

    DF508/i507del I have just been thrown off phase 3 combo trial.

    My daughter has one Delta F508. The other we just learned last year (she is 23) is c.869+1 869+4 delGTAAinsACATTATT. Guess there is no short way to say that one! They also said that she is the only one (on record) with that mutation. Does anyone out there know what I can do to find out more...
  19. S

    remembering my son . . .nathan daniel

    Nathan Daniel. What a beautiful name. "I'm sorry for your loss" doesn't cut it. My daughter has CF and fights for breath every day. I will think of Nathan Daniel each and every day and light a candle in his name and pray for his family. My love goes out to you.
  20. S

    Obesity in CF

    Before my daughter, who is now 23, was born I was quite nervous as large babies run in my family. My Grandmother weighed 14 lbs at birth and I was 10lbs 6 oz. I was pleased when my daughter weighed 7.5. She was small and delicate, so unlike me. She was not diagnosed until she was 11 yrs...