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  1. Replies
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    Thank you for the input. Right now I'm trying to...

    Thank you for the input. Right now I'm trying to find a doctor who will find the best drug for my pump, the last one requiring a test of morphine in the pump's port.

    What I am curious about is...
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    Imogene, and the broad CF community, I am so...

    Imogene, and the broad CF community,

    I am so excited, over what this means for the CF community, and for you and what you represent! For the CF community, we can generate "Un-FitBit" data, with...
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    4,650

    In today's world everybody seems to have tattoos....

    In today's world everybody seems to have tattoos. When I was young, getting something as noticeable as a tattoo, nose rings, gauges and such labeled people, for good and bad. In the military, a tat...
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    Thank you for the encouragement and support and...

    Thank you for the encouragement and support and the reminder that I'm doing something that we all can learn from potentially. The pump was implanted January 29th, 2018 as I noted when I began this...
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    Something that my parents did was straight out of...

    Something that my parents did was straight out of "Cider House Rules". The orphanage had a sickly boy, presumably from alcohol use by the parents, or something else that wasn't well understood in...
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    I would suggest that you look up Dr. John Campana...

    I would suggest that you look up Dr. John Campana or possibly Dr. Janis Birney. I don't know anything about pediatric ENTs or if it makes any difference.

    Good luck
    LL
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    Very interesting! I grew up at what amounts to...

    Very interesting! I grew up at what amounts to "altitude" for many at 6,400 feet. Altitude of 14,000+ feet was under an hour by car and most summer weekends the family would go to Rocky Mountain...
  8. I have been waiting for some credible Public...

    I have been waiting for some credible Public source to spell out the cautionary tale of the benefits and dangers of using a consumer genetic testing company. The newer TV program series "Bull"...
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    The best advice I was given regarding employment...

    The best advice I was given regarding employment helped me a lot. 1. Always be worth more to your employer, than he/she is to you. 2. Assume 100% responsibility for everything you have been...
  10. Poll: This question is not only thoughtful, it's a good...

    This question is not only thoughtful, it's a good model for most medical tests and procedures. I try to remember to ask if anything actionable could follow with the results in hand. If you're...
  11. I'm currently taking Creon 36, the highest dosage...

    I'm currently taking Creon 36, the highest dosage available. Many CFers have epic gastric distress and the the cause is as elusive. When I was diagnosed with CF the least surprise was the degree to...
  12. In another life I had an automation engineering...

    In another life I had an automation engineering and manufacturing company here in Denver for domestic and international markets. Several times a year we had distributors and customers visit, coming...
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    A recent advertisement conjugating IBM and...

    A recent advertisement conjugating IBM and BlockChain means that BlockChain is going to be mainstream. With the wide variety of markets BlockChain is many things to many people. So, what is in our...
  14. My experience was in 2001-2002 so any sage advice...

    My experience was in 2001-2002 so any sage advice is dated. In obtaining a CF diagnosis, in short, we went to Boston's Beth Israel Deconess Center and saw one of the 4 pancreatolgists in the U.S.. ...
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    I'm not sure how frequently a drug side effect...

    I'm not sure how frequently a drug side effect results in a permanent problem. You can read this in the data sheets for yourself. A favorite book of mine is "Suggestable U". As the title infers,...
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    I'm not going to be able to answer your question...

    I'm not going to be able to answer your question about Xopenex. I did a "Search" of Xopenex and there are in excess of 500 references in over 500 posts. Hopefully you will be able to get some...
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    It's tough to find the best way to deflect that...

    It's tough to find the best way to deflect that question, "what do you do?". Our self esteem and identity are tied to that very big question. Until I hit 50, and CF's wrath stopped any hope for...
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    The fastest way I know to locate the CFF...

    The fastest way I know to locate the CFF Accredited Adult CF Clinics is by contacting the regional or state CFF by email or phone. I hope my information isn't dated it's been a year or so since I...
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    For what it's worth, my first genetic testing...

    For what it's worth, my first genetic testing came back inconclusive. Being a geneticist, I found the answer suspicious so I called the facility and talked with the Senior Scientist in charge of all...
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    Don't Do This, DON'T DO THIS, please.

    The past year has been an exercise in last ditch pain management. I'm certain that the medical professionals and manufacturers of Spinal Cord Stimulators and Intrathecal Pain Pumps would have to...
  21. I found myself in a lively discussion with one of...

    I found myself in a lively discussion with one of my doctor's about the business of Genomics and what they really want. Dr. "Nancy" was remarking that she'd completed her Christmas shopping, buying...
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    I am sorry to hear about what would be...

    I am sorry to hear about what would be embarrassing for anyone. My niece started to have a little leaking when she was 11. Ultimately she found Kegel exercises for strengthening the pelvic floor...
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    Sorry but I'm not a teen and I didn't touch...

    Sorry but I'm not a teen and I didn't touch alcohol until my 21st birthday. No, I'm not a tea totaller, or someone who judges people for what they choose to deal with stress and loosen inhibitions. ...
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    I'm an owner of the Vick's personal steam...

    I'm an owner of the Vick's personal steam inhaler, the Sinus-Inhaler. I use it but I am late diagnosed and my lungs have been spared from penetration of CF. My twice a year visit with my CF...
  25. Jeanne, congratulations on this new record and...

    Jeanne, congratulations on this new record and thanks to the people who have become participants. I'm hoping to see the number grow to a thousand, or more. The CF community represent an "island...
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