Bird fancier’s lung

[Mary C Brewington]

Hanne, I was diagnosed with HP in Feb 22, I suffered with it for a year before having a VAT biopsy.  My Pulmonologist put me on high dosage of Prednisone.  I am currently taking CellCept with much success, I am down to 10MG of Prednisone and only need O2 when I am ambulatory. My lungs remain the same which I believe is a triumph. I can do this, hopefully you can too!

Mary Brewington, Edmond OK

 

[Robert Gross]

Some 10-12 years ago I was diagnosed with that. After getting rid of our birds, plus therapy, I got over it for a couple of  years, then started again. This time it was diagnosed as IPF (7 years ago.) My current pulmonologist says that a) it is a  know precursor to IPF and b) treating it may prevent it progressing to IPF.

I noticed that the Wikipedia article on it now says it can lead to IPF.

Good luck with it.

[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.

[Donna]

I have 2 Parrots but, was not diagnosed as that being the cause of my PF. My Pulmonary Dr. is not happy to hear I still have them. They were my first Husband’s  since passed and now mine and have taken care of them since then. They are in their late 30’s. I just can’t imagine rehoming them I know if it gets to a point I can’t take care of them I will need to. They have been family  and I have been through so much the last few years.
I know you and others will feel different in regarding this. Anyway this is what I am doing.

Diagnosed 5 1/2 years ago Early Staged.

[Hanne Swenson]

Dear all of you.

Thank you for responding and sharing your stories/ experiences. I think we can learn a lot from each other.
I will have my first year extensive check up in a few weeks, it will be interesting…. And scary…. .

It is painful to read that so many people can’ t afford the right treatment and medicine that they need. I am fortunate to live in Norway where all my needs are taken care of without worrying about cost..

And Donna, I have full respect for your love for the birds. I also love birds????

I hope today is a good day for everyone.

Hanne

[Rhonda Kramer]

I personally have not been dx’d with bird fanciers lung, but I have a friend who was. They had an aviary in their home, and she became very ill and was on oxygen when she was dx’d. They did rehome the birds, some of which were exotics they had had for many years, but two years later she is back at work with no supplemental oxygen.

Best wishes for your recovery.

 

 

[Karen Rachal]

I had parrots for 30 years.  In 2011 after a car accident, I had a chest X-ray.  No problem.  In 2016, I had another chest X-ray in the emergency room.  No one told me about the fibrosis.  Not the er doctor or my pcp.  It was Christmas Eve and I should have read the discharge paperwork.  At my follow up with my pcp, he didn’t mention it.  I was diagnosed with IPF in 2018.  My pulmonologist prescribed Esbriet.  He also said that I wasn’t a transplant candidate.  Two years later I was trying to get into a clinical trial.  I changed pulmonologists and this one sent me to be evaluated for transplant.  He also said I had to get rid of my parrots.  It was such a hard decision. They were family members.  They talked in both our voices.  I wasn’t accepted for transplant and if I had known I would be turned down, I never would have let them go.  The second pulmonologist diagnosed me with chronic fibrosing hypersensitivity pneumonitis due to bird exposure.  The damage to my lungs is extensive.

[Dennis Jackson]

Hanna, I had two CT scans in 2015, because I was having mild problems breathing. (I strongly suspected it was my heart–I had had 3x bypass coronary surgery at Johns Hopkins in 2012, but extensive tests on my heart in 2015–and more recently–showed that my heart was “okay.”) First I went to a pulmonologist in my hometown, Vero Beach FL. He did manage to have the proper tests done–a PFT breathing battery of tests, a six-minute-walk-down-the-hall using an Oximeter to measure my oxygen levels, and a CT scan. The latter indicated quite clearly that I had “pulmonary fibrosis,” but my local “doctor” did not bother to MENTION that to me. Same thing happened six months later at Cleveland Clinic in Ohio. The expert pulmonologist there said I should have another CT done in the future, but was vague enough about that (the importance of the words “pulmonary fibrosis” on my CT pathology report) that I left Ohio and just didn’t worry about my lungs until 2021. Even then, I just had mild breathing problems and increasing fatigue, and I felt positive I had HEART problems. I went to Mt. Sinai Hospital in Jupiter, Florida, to see a cardiologist, and figured I might as well visit their pulmonologist while I was there. The heart doctor said my heart was in “okay” shape, but the pulmonologist diagnosed me with “pulmonary fibrosis” (October 2021) and quite seriously indicated that I had a PROBLEM! It took her less than a half hour to determine that I had “Hypersensitivity Pneumonitis”—she spotted on my entrance papers the fact that I had a PARROT named Scooter, and I had been around him for about 9 years. She sent me to have a big battery of “allergen” tests, and sure enough, they indicated that I had an allergic response to TWO of the 100+ things I was tested for: mold (which one cannot escape, living in Florida) and PARROTS.
Right away she said, “there’s the problem,” and diagnosed “Hypersensitivity Pneumonitis” (a type of PF, with virtually the same outcome as PF). Poor Scooter had to pack his little birdie bag and go live with a friend who lives in Sebastian. I do think that that–the relocation of Scooter–may’ve helped a little, but 1-1/2 years later, I’m having more difficulty breathing (still no oxygen tanks prescribed and still no coughing problems). I’m 77-2/3 years old and that likely counts as a negative for me. My pulmonologist in Jupiter, Dr. Diana Amariei, is a very well-trained lung doctor. After med school at Boston University, she did a 3-year residency at Johns Hopkins Hospital in Baltimore, and was asked to stay on there for two extra years to aid in research on patients with PF (and specifically with Hypersensitivity Pneumonitis), so I feel like I’m in good hands NOW, as far as having a very knowledgeable pulmonologist helping me. I am glad I made the decision to get OUT of the hands of Vero Beach pulmonologists, and go to Dr. Amariei, a young physician who practices about one hour south of me. The journey is tiring, but I hope I can continue to have her care for me from here to the end. Whenever that comes. I almost never get out of my home to see a movie or eat in a restaurant but my wife and I work around that. The one thing that HAS been different for me—having Hypersensitivity Pneumonitis diagnosed in place of PF–is that I’ve had a hard time getting into Clinical Trials for idiopathic PF.

[Hanne Swenson]

Hi again.
And again , it is interesting to read your stories. We also had an aviary for years, which we so much enjoyed! My husband is a wildlife biologist, so animals have always been in our lives.
When I got ill last year, I had just returned from Chile. There we visited an island with about 40 000 pinguins and gulls. No vegetation and very dry and dusty, and you can only imagine the bird poop!

When I was in the hospital upon the arrival in Norway, I told the doctors I was convinced something on my travel had initiated the sympthoms.  So, we evaluated the trip and my whole life….. and that is how the «birds» turned up.

I have only been focused on the PF ( diagnosed as mentioned last spring), until I now again got very ill recently after feeding wild birds close to our house. From now on there is not a «feather in our house» or its surrondings ????