@sofia-stavridi

Sofia, I am sorry this took me so long to respond.  I found the specific things tested for in the hypersensitivity pneumonitis screen test.
>Aspergillus fumigatus
>Micropolyspora faeni
>Pigeon Serum
>T candidus
>T vulgaris
>S viridis
Hopefully, this will help with your blood testing.  However, I was negative on all these… Read more

Margaret Kresge,

Hope you have an informative appointment with your mom tomorrow. If the pulmonologist doesn’t have any suggestions for an industrial hygienist, or if he doesn’t think it’s really that important, please let me know if you would like some assistance in locating someone.

Robin

Hi Margaret,

It looks like Charlene was going to send the info I had sent the others earlier.  An industrial hygienist has the proper tools for testing where moisture areas are in your home. Then they write up a report for your building contractor, suggesting areas that need to be exposed to check for mold, etc.

they also take air samples… Read more

I went for my follow-up appt at Johns Hopkins last week and my Dr was pleased with my improvement since August. The CT scan showed less “grey areas” than the last one. These areas are the ones that were referred to as permanent scarring by my first doctor.

My PFT was a little better, but she said those numbers need improvement. All in all,… Read more

@Mary Osullivan

I’m  so pleased that you’re going to Duke with lots of questions.  Write them down as you think of them while you’re waiting for your appointment. “Remind” your doctor’s office that you would like your appointment made as soon as possible.  Sometimes those calls are “overlooked” if you remain silent.

My life totally changed… Read more

@Lynn

I agree with Kate—move out of house during any remodeling.  And if you have any carpet already in your house, have it removed and replace with something like luxury vinyl.  Carpets are full of all sorts of stuff I can’t spell!

Robin

@Kate

On that particular screen, there was:

Aspergillus fumigatus

Micropolyspora faeni

Pigeon Serum

T candidus

T vulgaris

S viridis

Thankfully, all that was negative—I’d hate to have something I couldn’t spell!

Robin

@Lynn Schmitt

There is a Hypersensitivity Pneumonitis Screen blood test.  My doctor at Johns Hopkins ordered it for me. Pigeon Serum is one of the allergens tested for.  In my case, it was negative.  You have had that screening, haven’t you?  If not, try “tactfully suggesting” that test to your doctor.

Before any remodeling, I would suggest… Read more

There have been numerous comments concerning scarring.  My first doctor  said I had permanent scarring, but when I went for a second opinion (at the first doctor’s advice), the new doctor, (who deals with rare lung diseases) looked  at the High Resolution CT scan and showed me what the first doctor was referring to when he said … Read more

@Kate E,

When I mentioned possibly moving to a condo to my contractor, he made a very good point.  You never know what is in them, or if they’ve ever had a leakage, etc.   Before purchasing a home, I would want an industrial hygienist to do testing in it.

For instance, you never know if drywall used in a house was purchased during the years… Read more

@Ellen Haley

Notice on my report that they did 3 air samples. One was at one end of the house in the kitchen/great room and the other at the other end near my bedroom/bath. There was a third one done outside that was very interesting as well.

Robin

Ellen,

I just forwarded you the email with the report.  I was connected with an industrial hygienist through an owner of  a carpet and upholstery steam cleaning company.  His company specializes in fire, smoke, and water restoration and mold remediation.  He called the hygienist that his company uses when they need specifics that they can… Read more

For those of you who posted your email address, I am sending a copy of the report and billing I received from the industrial hygienist.  I wanted you to get an idea of the cost, although I do believe my charge was very reasonable for the information I received.

Also, the 2 pages from the lab that they used will be included.  That includes the… Read more

Paula,

Sorry to learn your biopsy confirmed IPF.  You mentioned the pigeons, and the first question I was asked was  “did I have pet birds in the house?”  It could possibly help if you have your home tested as I did by an industrial hygienist, to maybe identify allergens that you may be exposed to daily.  Anything that might slow the… Read more

Charlene,

The following organisms were found in high percentages in the air samples in my house. All three of these are common allergens and agents of Hypersensitivity Pneumonitis. They are Alternaria, Cladosporium, and Penicillium.

I’d be happy to send you the report and the info they provided concerning the organism descriptions,… Read more

Charlene,

I had never heard of an industrial hygienist before this either.  I’ll be glad to give more information on the findings and how they’re related to HP. I’ll pull that file and get back with that within a few days.

Robin

When my pulmonologist diagnosed me with PF a little over a year ago, he wanted to get to the cause. When he exhausted all possibilities, he wanted me to go to Johns Hopkins for a second opinion.  He didn’t want to just label it IPF and give me an expensive prescription  that may or may not help and would probably make me sick.

I went to Johns… Read more

I was diagnosed with Pulmonary Fibrosis this past December.  My Dr is referring me to Johns Hopkins, as he has not labeled it IPF as yet.  He said that I do have reflux, although I really haven’t had the classic symptoms.  The gastroenterologist said that my reflux would not be the cause of the fibrosis.

I am now on medication for reflux and… Read more