Recent content by longtimer

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

    I think one thing you wanted was a quick reply to sort of dismiss their curiosity and lack of knowledge and skill. I would say. "I am glad I am so healthy as well, especially since they now have a cure for some of the types."
  2. L

    Husband with CF, declining health,lungs functioning at less than 20%,what can be done

    Well I guess everyone has a different approach. Even if I have someone who on paper is resistent to all antibiotics, I go to two others and at least give them a try. I have seen the Cayston nebs work wonders and also po Linezolid where the MRSA got better and the alcaligenes did not have as...
  3. L

    Colistin info please..First time to try it

    Make sure you mix it with sterile water and not saline. Mix it up in the morning before you need it and put it in the refrigerator. This helps get the foam out. If it tastes funny to you then suck on a hard piece of candy when you do it. If it does not make you better after the month ends...
  4. L

    Help me please!!!

    Do not listen to your pediatrician. Call your local CF Center. Tell them the story. Only get the sweat test at a lab associated with the CF Center. Many labs do it wrong and you get false results. I have several overweight patients with CF. You need a sweat test, genotype (ask for emla for...
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    Husband with CF, declining health,lungs functioning at less than 20%,what can be done

    Ok The reason he is not being considered is probably because of his Burkolderia not his Pseudo aeruginosa. I suggest there are centers who will transplant patients with MRSA and cepacia. I suggest you doctor shop and ask UC San Diego, UCSF and Stanford if they will take a CF transplant...
  6. L

    What do you Call this type of test?

    It would be a sleep study. Some sleep labs will do an ambulatory oximeter study to measure your oxygen at home while sleeping where you dod nt need to have a full sleep study in a lab. An oximetry study is much cheaper and easier to do than a full polysomnogram (sleep study).
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    Creon cost

    <P>Patient just changed insurance to Signa with new job. Walgreens wanted $600 for six bottles of enzymes. Help. Could only pay for one bottle which won't even last a week. Applying for assistance program but anyone else have this problem with Signa?</P> <P></P> <P>thanks</P>
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    Creon cost

    <P>Patient just changed insurance to Signa with new job. Walgreens wanted $600 for six bottles of enzymes. Help. Could only pay for one bottle which won't even last a week. Applying for assistance program but anyone else have this problem with Signa?</P> <P></P> <P>thanks</P>
  9. L

    Creon cost

    <P>Patient just changed insurance to Signa with new job. Walgreens wanted $600 for six bottles of enzymes. Help. Could only pay for one bottle which won't even last a week. Applying for assistance program but anyone else have this problem with Signa?</P> <P></P> <P>thanks</P>
  10. L

    My three year old has bad breath

    It can also be reflux which is common in CF
  11. L

    My three year old has bad breath

    It can also be reflux which is common in CF
  12. L

    My three year old has bad breath

    It can also be reflux which is common in CF
  13. L

    Viokase is not being made anymore

    <P>So there are two options that you could try.  In some cases what I have done is give the regular dose of enzymes you would give at a meal before the tube feeding and at the end.  If this doesn't work then sometimes giving it before after and waking them up half way through to give another...
  14. L

    Viokase is not being made anymore

    <P>So there are two options that you could try. In some cases what I have done is give the regular dose of enzymes you would give at a meal before the tube feeding and at the end. If this doesn't work then sometimes giving it before after and waking them up half way through to give another dose...
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    Viokase is not being made anymore

    <P><BR>So there are two options that you could try. In some cases what I have done is give the regular dose of enzymes you would give at a meal before the tube feeding and at the end. If this doesn't work then sometimes giving it before after and waking them up half way through to give another...
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