[Peggy Ross]

Hi, Larry,

It took an biopsy to prove I had hypersensitivity pneumonitis at age 82, not ipf. Diagnosed in 2009, I had no symptoms except breathlessness, but was hospitalized at age 72 bcz I cldn’t breathe. Diagnosed then, Dr looked very sad when he told me of diagnosis. I was asymptomatic for several yrs, then began to be short of breathe when I bent down to hook up my dogs for a walk. Maybe 4-5 yrs after diagnosis. I was also more concerned with quality, researched the net and found that Nattokinase and Serrapeptase might be helpful (very affordable, too) when Perfenidone cost $2,000 for a 30- day supply, way beyond my budget. Now, years later, I am much worse (brain-stem stroke in 2019 probably affected lung function), n trying to work Natto into my Warfarin dosage, interac- tions having caused me to ignore any treatment of lung damage for several years. So far, all doctors refused to help me with dose adjustment, so I am my own guinea pig. I see a slight improvement, hope for more, still struggle to do any house work, but do it anyway. I found all efforts to get more information fruitless, now have little faith in doctors knowledge of or treatment of this disease. My advice is follow your own best advice. Noone knows you better than you. You are on the right path, trust your instincts. Stay strong. Peg.

[Peggy Ross]

Glad to make a connection, as I experienced major improvement within an a few weeks of starting the enzymes, following my own research, but discontinued them because of interactions with Warfarin. Have never taken prescription meds for HP, biopsy diagnosed after 2 yrs of doc unable to distinguish IPF or HP. Referral to UCSF, same result. My pulmonologist said it is too late 4 Ofev or Esbriet to do any good. So I just enjoy the wind blowing through the falling leaves in the neighbor’s yard. At 86, recovering from a crushed rt. shoulder, my only complaint is that I was never guided 2 the correct doses of the only pills that were helpful. Your post is encouraging, Lee. I believe your good health is due primarily to the enzymes, good diet, and good attitude. Any info you can add about dosage? I am encouraged to start back on my own course, dump the Warfarin, and again fight the fibrosing that appears to have me sidelined. If I may ask, do you think age could be a factor in your successful recovery of function? Please keep us posted. Your progress is inspiring. #

[Peggy Ross]

Hi, Hanne, I was giagnosed in 2009 with IPF, later determined by biopsy to be HP, also triggered by sensitivity to bird protiens, although I had no birds at the time of biopsy, nor was any treatment recommended by my pulmonologist or the consult team at UCSF consulted after the biopsy. I was ok, although somewhat short of breath, until a stroke four yrs ago was followed 6 mos later by an appendectomy which hospitalized me for 8-10 days.  At 85, I have been on exertion-needed oxygen, no meds, very sedentary, as even a walk down the hall leaves me very short of breath.  I guess this is a new plateau, lower than the last one (and first one), which allowed me to work, prior to the stroke.  Now, any exertion sends me to the oxygen concentrator, even washing a few dishes or feeding my dog. Walking down the hall is major exertion for me.  I took Serrapeptase and Nattokinase until interaction with Warfarin (blood thinner) caused me to stop.  I cannot afford Ofev, and frankly have little faith that it is effective enough to justify its cost.  The side-effects of prednisone get it a thumbs down from me, too.  (Aggression).  The enzymes mentioned ended my coughing and improved my breathing right away.  I am going to consider taking them again and adjusting my diet to slow clotting time to address the blood issue.  Good luck, Hanne.  Look into your diet for management of your disease, too.

[Peggy Ross]

An autopsy (age 78) was required for diagnosis, as the scans looked like IPF to the radiologist, but my pulmonologist was leaning toward Hypersansitivity Pneumonitis, since I had been coughing productively and was still around more than 4 yrs.  after diagnosis.I think I had C-19 in Dec, as the “flu” resembled the one I had in 2008 or 09, just before scool eended.  I was a teacher, woke with high fever, aches, no other symptoms.  After 3 wks of dry cough, I had 4 AFib attacks in 3 days.  Unable to breathe, I was hospitalized, put on oxygen, and eventually diagnosed (based on scan) with IPF.  Same M.O. last December, tbough less severe, stayed home in bed,  had apparently been infected by close contact with friend who came to help my daughter, who has cared for me since stroke in Jan, 2018.  I was stable until 2017, then began to need oxygen to walk my small dogs.  Bending over to put them in harnesses was just too much.  So, I went from stability to oxygen, with a short trip through rehab along the way.  Now vegan, except for occasional taste of fish (I’m sorry, Nemo), I think I’m probably not likely to get Covid -19, and credit the “stay home” policies .  Wishing you all good health, and urging a biopsy, if, like me, you have any doubts about your diagnosis.     Peggy in Soquel, Sta. Cruz Co, CA central coast.