Search results

  1. J

    nasal polyps and deviated septum

    Yes, I had a lot of issues with polyps. I had them removed every couple of years starting in grade school. The last time was in late 20s. Not sure if it was my age or not but Flonase seems to have helped keep them in check ever since. I do not have a deviated septum.
  2. J

    Oldest Person With CF

    I promised my mother that I would out liver her. She turned 81 in September and looks like she has another 15-20 years left. That means I have to make 70 but why not 100?
  3. J

    Anyone willing to do this?

    Grew up in a small town in Iowa. Moved to Chicago after college. Have been in Akron, Ohio last 16 years.
  4. J


    It can help. I've seen one off and on for years. I'll go for periods where I dont feel the need. Other times, like CF itself , things can take a turn where I can use some extra help. Sometimes its good just to be able to talk it out with someone who's not a family member or close friend. I do...
  5. J

    Survey results Qualitative You Matter...

    My wife. She seems to know what I need at different times and stages. She knows when I need a gentle nudge or a serious push. Despite challenges we've been able to create a great life together. We've traveled to many parts of the world that I never imagined I would ever see. Our oldest...
  6. J

    Just so tiredzzzzzzzzzzzz

    Yes fatigue can be an issue with diabetes. Your weight gain and decreased exercise could also effect your blood sugar levels and be adding to your fatigue . You should get tested soon.
  7. J

    Cf fund raisers- do you go??

    I walk in our local Great Strides event every year. Ours is coming up this Sunday. The families know each other and we keep the required distance.
  8. J

    Living Today, Adding Tomorrows

    Thank you for sharing. Your daughters story and mine are pretty similar albeit 30 years apart. I to lost my older brother as a kid. She's got a great attitude that is going to serve her well. You have every right to be very proud of her.
  9. J

    crazy sugars and a little frightened

    CFRD is so common amongst us that your center should be testing for it. I was diagnosed at 40. In the beginning I confused the highs and lows just based on my symptoms. They put me on glucose and its been under control for years.
  10. J

    NYTimes cover story today, dying with teens

    LL thank you for sharing your story. I think there are two topics that don't get discussed enough. One is mental health and the other is end of life care. I think what I took from the article is that these kids and young adults did want to discuss the topic. This disease or other ones can make...
  11. J

    First Tune Up

    Great news. I'm glad you've bounced back. I think its impossible not to have some scarring by now. I love your attitude.
  12. J

    Negative reaction to enzymes, anyone pretty familiar with them?

    I would discuss it with your doctor. There are other enzymes. I've not taken zenpep before but I had to switch brands because of other issues. It could also be the dose you're taking.
  13. J

    CF and natural options... ???

    There is a quote by Edison that I think applies to CF research. "I've not failed. I've just found 10,000 ways that won't work." My center is also a research site and I know they're a lots of committed scientist and physicians working on new drugs and treatments. Unfortunately CF is extremely...
  14. J

    Do CFers write their Bucket Lists?

    What a wonderful post. I have a physician friend at work who has suffers off and on with mild depression. On a stressful day at work he blurted out "life must be simple when you're suppose to be dead!" He immediately apologized and I just laughed. In someways he did capture my approach to...
  15. J

    Bill might soon allow students to self-administer enzymes in school!

    When I was a kid the schools would let me carry them myself. Like Ethan, I was pretty good at taking them quickly. Only my good friends and some teachers knew. I think it also made me take responsibility for my CF at an early age. I think that's very important because there is always something...
  16. J

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

    I work for a large insurance company and have never had any issues due to my CF. My manager, the CEO and a few close associates know about it. Others have no clue. I wouldn't work for a company that treated employees poorly because of health issues. A few comments on the ACA. If you refuse...
  17. J

    Honoring My Wife

    John, I am sorry for the loss of your wife. One suggestion would be to form a Great Strides team of your own. There are a number of walks in Texas in the spring of 2015. Although I have CF, I formed my own team to honor my brother who lost his life to CF. My teenage daughters have...
  18. J

    Insurance coverage through employer - how do you keep high useage from employer?

    I work for a large insurance company. We are not permitted to reveal to the company who the specific person is receiving treatment. They are permitted to see summary data on the claims dollars for their employees but the names are not shared. The limited information is usually released only to...
  19. J

    Transitioning from peds to adult

    The group is right, you need to get into a Adult CF center. Mine in Ohio is still at Childrens but the clinical teams are segmented into peds and adult patients. The clinical team would be involved in any inpatient tune ups.
  20. J

    CF and discrimination?

    I don't think there is a right or wrong answer. I've worked for a large health insurance company for 20 yrs. Some people at work do and others don't know about my CF. My companies been great and very supportive of me and others with issues. I think you need to know what kind of culture and the...