Search results

  1. J

    Hemoptysis

    From what you describe I don't see what I would consider justification for an embolization. <br /> <br />They are normally used if 1) the bleeding keeps going, or reoccurs over a period of time or 2) if you bleed enough that your stats (PTT & PT) are impacted. <br /> <br />Beyond that is...
  2. J

    I hate CF

    I can't say that I'm ever fond of CF, but today of all days in the last few years I'm just fed up with this d*mn disease.<br><br>For those of you familiar with M's story, he has not had a good progression and went through a lot early in life.  However, things had been stable for some...
  3. J

    I hate CF

    I can't say that I'm ever fond of CF, but today of all days in the last few years I'm just fed up with this d*mn disease.<br><br>For those of you familiar with M's story, he has not had a good progression and went through a lot early in life. However, things had been stable for some...
  4. J

    I hate CF

    I can't say that I'm ever fond of CF, but today of all days in the last few years I'm just fed up with this d*mn disease.<br><br>For those of you familiar with M's story, he has not had a good progression and went through a lot early in life. However, things had been stable for some...
  5. J

    VX-770 to be 250K p/year per patient

    Just to clarify, insurance can and will pay for it IF it works. Though it may take some time for them to agree to pay. I have a son w/ Hemophilia and his clotting factor (IV infusions 2x/wk) currently runs nearly $25,000 a month. Both BCBS & medicaid have both paid for it at different points...
  6. J

    VX-770 to be 250K p/year per patient

    Just to clarify, insurance can and will pay for it IF it works. Though it may take some time for them to agree to pay. I have a son w/ Hemophilia and his clotting factor (IV infusions 2x/wk) currently runs nearly $25,000 a month. Both BCBS & medicaid have both paid for it at different points...
  7. J

    VX-770 to be 250K p/year per patient

    Just to clarify, insurance can and will pay for it IF it works. Though it may take some time for them to agree to pay. <br /> <br />I have a son w/ Hemophilia and his clotting factor (IV infusions 2x/wk) currently runs nearly $25,000 a month. Both BCBS & medicaid have both paid for it at...
  8. J

    Going to do The Vest for 8 hours straight

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i> Can't hurt to try.</end quote></div><br><br>Not sure I agree with this.  The vest is an aggressive way to introduce vibration & trigger coughing.<br><br>I would personally be concerned about doing it for 8 hours...
  9. J

    Going to do The Vest for 8 hours straight

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i> Can't hurt to try.</end quote><br><br>Not sure I agree with this. The vest is an aggressive way to introduce vibration & trigger coughing.<br><br>I would personally be concerned about doing it for 8 hours straight as...
  10. J

    Going to do The Vest for 8 hours straight

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i> Can't hurt to try.</end quote><br><br>Not sure I agree with this. The vest is an aggressive way to introduce vibration & trigger coughing.<br><br>I would personally be concerned about doing it for 8 hours straight as...
  11. J

    Brochoscopy

    Pepsi, I'd probably go for it. If you can tolerate the anesthesia; it can't hurt and it will give you 1) a confirmed answer as to what is growing/causing issues and 2) let the Dr get a visual look at the condition of the lung tissue. Becca's mom, one of the biggest advantages of a bronch in a...
  12. J

    Brochoscopy

    Pepsi, I'd probably go for it. If you can tolerate the anesthesia; it can't hurt and it will give you 1) a confirmed answer as to what is growing/causing issues and 2) let the Dr get a visual look at the condition of the lung tissue. Becca's mom, one of the biggest advantages of a bronch in a...
  13. J

    Brochoscopy

    Pepsi, I'd probably go for it. If you can tolerate the anesthesia; it can't hurt and it will give you 1) a confirmed answer as to what is growing/causing issues and 2) let the Dr get a visual look at the condition of the lung tissue. <br /> <br />Becca's mom, one of the biggest advantages of a...
  14. J

    r668c & p.T925A

    Shawn, welcome to the site. As for mutations, your best bet is if you go to the "families" forum, the very first post is Ambry Genetics who does CF genetic testing. You can reach Steve with Ambry via the thread and he is usually good about sharing whatever knowledge they have about mutations.
  15. J

    r668c & p.T925A

    Shawn, welcome to the site. As for mutations, your best bet is if you go to the "families" forum, the very first post is Ambry Genetics who does CF genetic testing. You can reach Steve with Ambry via the thread and he is usually good about sharing whatever knowledge they have about mutations.
  16. J

    r668c & p.T925A

    Shawn, welcome to the site. <br /> <br />As for mutations, your best bet is if you go to the "families" forum, the very first post is Ambry Genetics who does CF genetic testing. You can reach Steve with Ambry via the thread and he is usually good about sharing whatever knowledge they have about...
  17. J

    Ejaculation Volume

    <div class="FTQUOTE"><begin quote><div> </div><div>ALSO, you said I dont have semen? You mean I don't have sperm because of CBAVD.</div></end quote></div><br><br>Correct, she meant sperm, and the lack of sperm won't impact volume the way you describe.  However, there is clinical history showing...
  18. J

    Ejaculation Volume

    <div class="FTQUOTE"><begin quote> ALSO, you said I dont have semen? You mean I don't have sperm because of CBAVD.</end quote><br><br>Correct, she meant sperm, and the lack of sperm won't impact volume the way you describe. However, there is clinical history showing a reduction in volume with...
  19. J

    Ejaculation Volume

    <div class="FTQUOTE"><begin quote> ALSO, you said I dont have semen? You mean I don't have sperm because of CBAVD.</end quote><br><br>Correct, she meant sperm, and the lack of sperm won't impact volume the way you describe. However, there is clinical history showing a reduction in volume with...
  20. J

    Portrayed Life Expectancy Affecting Life Decisions

    I personally am big on quality of life. If she enjoys school, and likes the challenge go for it. There is nothing wrong with pushing her to achieve; BUT if/when she is not able to keep up don't forget to give liberal support. I *think* what the teacher was trying to say is why put her in a...
Top