Kathy G

Hi Don,

I had a cryobiopsy which yields the same results as a VATS within 7%.  They were very careful to take minimal tissue as I don’t have much left to give.  I was diagnosed with biopsy and CT scan and a couple of years ago the cryobiopsy.  About 20% of HP people continue to advance with fibrosis.  I am one of those people.   I did all of th…[Read more]

I am going to talk with the pulmonologist (ILD clinic UCLA) on Tuesday regarding Rituxin.  I guess it takes awhile to get approved anyway so I have some time to research and think.  I belong to a Facebook group and several of those people say it was life changing.  Others said it did not help them at all.  I almost want to say I will try any…[Read more]

Hi Don,

There is one co-morbidity and it’s 30 pounds. Other than that, everything is in good order.  I may not have a choice, but I am out of my mind with fear about even thinking in that direction.  My antigen is bird feathers and droppings from sleeping on down pills and duvet.  I did really well after getting rid of all of that.  Tearing the…[Read more]

Hi Donald,

I am 58 and I have cHP with pretty severe pulmonary fibrosis.  I have been on and off cellcept and Prednisone throughout the years.  I wish I would have never gone off cellcept because maybe I wouldn’t have declined.  I have gone to Cleveland Clinic, Mayo Clinic, USC and at UCLA for the past 11 years.  Rituxin is very controversial but…[Read more]

I have been on OFEV for about a year and hit the wall.  This is the worst exacerbation I have ever had and am worried I am not going to bounce back.  My FVC dropped by half from last year and DLCO is 16%.  Having a very hard time breathing. Fibrosis has increased on the CT scan. I have been very slowly declining over the past 11 years, but ma…[Read more]

I would have never thought of the covid vaccine.  For me, I think I got worse after the second shot too.  Did your 02 sats decrease too?

Wendy,

I am going through the same exact thing as you right now.  Very, very scary.  I have had AE, but never like this.  I feel like I fell off a cliff!  I am going for a PFT next Tuesday to see the extent of the “damage”   My CT scan shows more scarring.  I don’t know what happened, but it happened overnight.  My pulmonologist mentioned that he…[Read more]

I have asked my immunologist, pulmonologist, rheumotologist and cardiologist about the elevated CRP and how to lower it.  No one knows!

How can you get rid of inflammation?  I have been trying for years and my crp is always extremely high.