[Robin Hollowell]

@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 substances. That’s when I had the air in my home tested for things that can cause HP. The results showed some of the things that were causes of HP. So just because the blood test isn’t positive, it doesn’t rule out the disease.

Take care and hope you can get some results that will help you go in the right direction for a healthier you.

Robin

[Robin Hollowell]

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

[Robin Hollowell]

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 by placing  small glass dishes that contain some compound for testing the air. They remain exposed while they check other areas. When they leave they take the dishes, close them tightly and label where they were located. They also test the outside air at your home.

Another very important thing to do is to have your air handling system checked and ductwork cleaned. They can also install something on your unit that cleans your circulating air thru the ionization process like hospitals use.

You could contact a restoration company and ask them who do they recommend for the testing you need before any work is done.

Good luck with connecting with a reputable company. They aren’t widely known yet, but I think our changing environment is going to keep these guys busy, and an industrial hygienist could be the first step toward healthier homes and families.

Tell your mom that I said hello and that I’m confident you’re going to help her breathe easier at night when she closes her eyes to rest.

Sending good vibes,

Robin

[Robin Hollowell]

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, she said I was on the right track.  She was pleased that I followed her advice with an industrial hygienist and followed through with renovations suggested.

Hopefully, with more weight loss and continued exercise, my endurance will improve before I go back in April.

That “second opinion” diagnosis of HP instead of IPF was life-changing for me.  Ask  your doctor questions when you aren’t clear with what’s going on.

Sending Hugs to All,

Robin

 

[Robin Hollowell]

@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 when I went to Johns Hopkins, and I hope that your journey to Duke–which is excellent and in my home state–leads you to a much healthier pathway.

My Best,

Robin

[Robin Hollowell]

@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

[Robin Hollowell]

@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

[Robin Hollowell]

@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 testing by an industrial hygienist.  There may be something that could easily (and more economically) be addressed during remodel. Also, be sure your contractor is aware of your health challenge so he can take measures during the renovation to minimize additional dust, etc.  For instance, all cutting/sawing of flooring/woodwork should be done outside.

Good luck,

Robin

[Robin Hollowell]

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  “scarring”.

She said those areas were not permanent scarring as there was no honeycombing.  She said many doctors never see scans of HP patients, as it is so rare.

I just don’t want to mislead anyone by saying that I was told that my “scarring” was not permanent.  I will be going for my follow-up this week at Johns Hopkins, and she will be comparing my last HRCT scan with one that was done last week.  This visit will be very informative as to the scarring issue, and I will keep you posted.

I said all that to say, once again, consider getting a second opinion, especially if your diagnosis has been labeled “idiopathic”.

Feel connected to you all and sending good vibes!

Robin

[Robin Hollowell]

@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

[Robin Hollowell]

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 provide.

The hygienist was a 4 hour drive from me, and that is something they are used to.  So if you know locally someone who deals with mold remediation or restoration due to smoke or water, they can probably recommend someone.  The industrial hygienist sends their collected samples and info to a lab for specific results.

I’m saying all that to stress this.  You don’t want someone to come and just take a look at your house and say, you’ve got a mold problem and we can clean that up for you.

I’m also planning to call the hygienist again for testing now that renovations have been completed.  It may seem to be an unnecessary expense, but peace of mind and easily breathing through my lungs is worth it!

My Best,

Robin

[Robin Hollowell]

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 air sample results and the effects of the organisms found.  Interestingly enough, the high numbers were the very substances that are associated with HP.

My next step after receiving that information was to show this report to my contractor, who worked with me to renovate some areas of my home.  He did everything during that 4 week period, (and I moved out), to assure the work was done with “dust walls”  in place to minimize further problems.  I also had parts of my air duct work replaced and all of it cleaned.  A unit was added to my heating/air system similar to those used in hospitals that uses ionization to clean the air constantly in my home.

HP is rare and many doctors just have never seen CT scans with such scarring that is NOT permanent.  However, whatever is in your environment that you’re so sensitive to, must be removed in order for you to improve.

If there is any way I can further help any of you, please let me know.

Best Regards,

Robin

[Robin Hollowell]

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 progression would be worth trying.

Hopefully, your doctor has come up with a game plan to help you with this challenge.

Best of Luck,

Robin

[Robin Hollowell]

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 actually notice more symptoms of it now.  Not eating too late before bedtime is more of a challenge than I realized.  I am doing better at it though.  I did purchase an adjustable bed made by Serta.  Surprisingly, the cost was not that bad.  I love it, and can’t imagine why I hadn’t purchased one years ago.

 

[Robin Hollowell]

@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 that there was a real problem with it depending on where it came from.

Take care,

Robin

[Robin Hollowell]

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, their habitat, and their health effects.  I just need your email address so I can attach the forms.  It’s very interesting and informative.

Robin

[Robin Hollowell]

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