Taleena Koch

We ALL need to be loud!  Speak out!  The best way to raise awareness about PF is to be active in talking to everyone you know.  Your voice may help someone in getting an early diagnosis for them or their loved one.  #LIVEwithPF #WHATMAKESMERAREPF #RareDiseaseDay

Hi Brian.  I am sorry for the late reply.  I just today received a notification from the PF News Forum system that I had a reply here that I was tagged on.  Gotta love technology.  🙂

The GERD issue has become a hot one. Back in 1999, Dr. Ganesh Raghu (one of the world’s leading experts in PF) wrote a paper about GERD and PF.  It wasn’t well…[Read more]

I totally get what you’re saying.  The unfortunate reality is that everyone is dealing with something and it is ‘their reality’.  Each person’s life doesn’t stop sucking just because they know someone worse off than they are.  The important thing for everyone to remember – and sometimes we all need a reality check on this – is that there is al…[Read more]

Hi Wendy.  As the caregiver (former caregiver) I do hope it’s okay if I interject my thoughts on this.

First of all, before I go to that, I do want to say as someone who lives with chronic pain (back, knees, and feet) I totally understand the difficulty of the holiday season.  Each year gets more and more difficult.  Last year, it took until th…[Read more]

Raising awareness is SO important and for years, we have been trying to get an alignment on colors.  Years ago, the PFF had blue and red and then they changed to the blue and green they have now.  I tried to align the Breathe Support Network with the blue and green as well, and so have the pharma’s.  However, much of the rest of the PF world is bl…[Read more]

Charlene and everyone dealing with PF… I would recommend the PFF Summit in San Antonio in November if you can.  I have been to the Summit multiple times and not only is it a GREAT educational experience, it is also so wonderful to meet others in the PF community face to face.  There are a LOT of patients and caregivers there and it’s always so g…[Read more]

There can be many reasons for a decline in DLCO, but he does need to talk with his doctor about this.  If he isn’t going to be able to see his pulmonologist for awhile, he should email in his medical portal if his clinic has one.  (Many do now.)  Otherwise, he should call and ask for a call back from the doctor or one of the staff to discuss th…[Read more]

Another great resource for support for patients and loved ones is the Breathe Support Network at http://www.BreatheSupport.org.  The Breathe Support Network has 6 groups so there is something to fit everyone’s needs.  We have the main group, which is for anyone interested in or affected by PF, there is a patient only group, a caregiver only group, a l…[Read more]

Another reason some may not be prescribed Prednisone on a regular basis is because they have IPF – the idiopathic form of PF.  It is now known that Prednisone does not usually do a lot of good in those with true IPF as there is not much inflammation.