Friday, October 4, 2013

Dr. Swigris' Pulmonary Fibrosis Research Website and Blog

Dr. Jeff Swigris from the Pulmonary Fibrosis Program at National Jewish Health in Denver, Colorado has developed a new "patient-centered" research program for patients with Pulmonary Fibrosis. He is a world leader in the clinical care of patients with Pulmonary Fibrosis and he is also an outstanding clinical researcher studying new ways to improve the everyday life of patients with Pulmonary Fibrosis. He's got some great ideas and I encourage everyone to take a look at his website at http://pulmonaryfibrosisresearch.org. You can join his "P3F Registry" if you are interested in being considered for enrollment into research studies about Pulmonary Fibrosis.

10 comments :

  1. i so needed to see this about using oxygen! i still have challenges accepting the fact that after 4 years, i'm on it 24/7. i WAS looking at it as if i was getting sicker and not looking at it as helping me maintain my quality of life.

    ReplyDelete
    Replies
    1. Great to hear that my blog is helping you understand your disease! Keep up the good work!

      Delete
  2. I have registered if P3F despite living in Canada. Amanda and I have worked to have my medical records forwarded to them and will see where they can utilize me in their research.

    ReplyDelete
  3. Is IPF more serious than PF? And if so, im wondering why.

    ReplyDelete
  4. I would love to see articles on why those with PF have such joint and muscle pain. Also why the weather can contirbute to more diffulty breathing. Thank you.

    ReplyDelete
  5. My grandmother just passed away from renal failure complications caused by medication that she was taking to treat pulmonary fibribosis. It was a scary time for her. She was diagnosed in February of this year and was told that she only had three months left because of the progression of the disease.

    ReplyDelete
  6. I hope this still works. I am devastated as my mom with diagnosed with ild in November 2017. She shows no sign of honeycombing in the lungs, and the X-ray looks identical to her lungs shape and health wise from a decade ago. They found this through blood work and a shadow on her lungs on an xray . The doctor said it's moving at a snail's pace, and does not show signs of ipf or the most serious types of ild. She has started a regimen of predinsone and will go back to see if it has stablized her condition a week from now. My questions is, has there been known cases of stablization of the non ipf related cases of ild? Do these patients have a generally more optimal outlook? I can't bare to lose my mom.

    ReplyDelete
    Replies
    1. Thanks for reaching out. I am sorry to hear that you and your mother are going through this. Yes, some folks do remain quite well for many years. Everyone's condition is unique, so its hard for me to give you any specific information about what will happen to your mom. Yes, folks who remain stable tend to do better than those who worsen. You can read more about PF here: http://www.pulmonaryfibrosis.org/docs/default-source/patient-information-guides/2017-pff-patient-information-guide.pdf?sfvrsn=0. You can also find a medical center with expertise in PF here: http://www.pulmonaryfibrosis.org/life-with-pf/find-medical-care. Best wishes to you and your mother

      Delete