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  1. M

    Immunosuppressant meds

    Does anyone know how being on an immunosuppressant could effect cf? I have an auto-immune condition and my neurologist is contacting my cf clinic to find out if it would be ok to start me on one. I just wondered if anyone had any experience with this? thanks
  2. M

    Starting creon

    I was just wondering if there was any side effects I should be on the look out for or be aware of? I was told the dose would probably need to be adjusted and it may affect my diabetes control. Thanks.
  3. M

    Just an update

    Just a little update after all the help I've received here. I'm now being seen regularly at my local cf clinic. They have me seeing a G.I. Doc as they believe my current stomach issues could possibly be chronic pancreatitis related to the cf and I am waiting for further tests. I have also been...
  4. M

    Clinic appointment

    I had my clinic appointment. It went well, if not a little overwhelming. So far just been put on puffers and lactulose and upped my gerd meds, but I had 14 vials of blood taken, need to do a morning sputum sample. I also need a bone density scan more complete breathing tests and am being sent to...
  5. M

    My mutations

    Ok, got the paperwork Two pathogenic variants were found in the CFTR gene. Test by multiplex-pcr analysis for 39 recurrent pathogenic variants in the CFTR gene. R117H 1717-1G>A 7T/7T Sweat test 74 from what I have read the R117h is mild.
  6. M

    Ok, I have Cystic fibrosis

    The receptionist called this morning because I had called twice I guess the doc gave her the ok, she asked if I wanted her to give me the results over the phone even though she couldn't answer any questions. I said yes. So, all I know is the genetic came back and I have 'mild' cf. The cf nurse...
  7. M

    Still waiting on genetic results

    Just a little update, I've had all the tests the cf dr wanted so far. I called his office Friday and didn't hear back, called again today and his receptionist said he would be in briefly today then he was away for the rest of the week. Through my family doctors office I found out I failed the...
  8. M

    Results not what I was hoping for

    I just got my sweat test results and they came back at 74. Still have to wait on genetic testing results due mid- end October. Not sure what to think right now.
  9. M

    Thanks to all the advice, getting gene testing

    Thanks to all the advice I've received on here. I had my appointment at the clinic. The doc doesn't think it is too likely it is cf causing my problems now but because of by previous high sweat test levels and childhood diagnosis he wants to retest everything. I am having a ct scan of my sinuses...
  10. M

    Anyone go to the Adult clinic at McMaster in Hamilton?

    I've got my first appointment there this week (and first clinic appointment in 30 years) and wondered what the clinic staff were like and what to expect? Thanks
  11. M

    differences between pediatric and adult cf clinics?

    I was wondering what the differences between pediatric and adult cf clinics were? From what I've read things have changed a lot since I was last at a clinic in the 80's. I know they try and keep CF patients apart now but I remember a big playroom that they threw all the kids into. What else has...
  12. M

    Received original diagnosis paperwork from 1974

    Since my first post here I have received the original hospital file from 1974. I had 3 sweat tests done that i can find and the results were #1 right arm 62 & 65, left arm 94. #2 right arm 115, 100 left arm 82, 100. #3 right arm 105,195 left arm 97, 97. Is it normal to have such...
  13. M

    40 year old misdiagnoised as a baby

    HI, just wondering if anyone knows of a condition LIKE CF? I am now 40 and was misdiagnosed as having CF when I was 6 months old. I got very ill with Staphylococcal pneumonia and my lung collapsed. When I was hospitalized the doctors contacted the hospital I was born in and discovered I had...
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