Your Doctor can Request a Second Opinion

[Charlene Marshall]

Hi Robin,

Wow, thank you so much for sharing a bit of your story with us and starting this topic thread. I am always an advocate for getting a second opinion if you, as the patient, are unsure of your diagnosis but now I am even more so. I am also really grateful that your doctor was so thorough and didn’t want to just label you with an “IPF” diagnosis, and send you home with medications that as you say, may or may not work. What a great physician he sounds like!

There are a couple of other folks on our forum who also have HP, but I’d not heard about an industrial hygienist before, that’s really interesting. If you’re comfortable doing so, do you mind sharing what the lab test revealed that are known to cause HP? This could be really helpful for others to know.

I’m so glad you were able to get that second opinion and continue to do well – kudos to you on losing the 15lbs! May 2019 be a wonderful year ahead for you.

Warm regards,
Charlene.

[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

[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

[Charlene Marshall]

Hi Robin,

Wow, it sounds like having the specialist come in and investigate was worth it to understand a bit more about the organisms directly linked to HP. Does the report explain how these originate? I’d be really curious to read the report if you’re comfortable emailing it to me. I had no idea this was even an option to have investigated actually! My email is: [email protected]

Thanks again Robin. What is the next steps now for you? Is there a way to remove these organisms from your home now that you know about them?

Chat soon,
Charlene.

[Lynn Schmitt]

Hi, Robin,

I have been diagnosed with HP for several years ago. I was never totally tested to see what the causative agent was, but after going to Cleveland Clinic and  University of Ky. Hospital, I still did not know what was causing the scarring.  I went to Baptist Pulmonary in Lexington, Ky. and after more blood work and seductive reasoning, my doctor is positive it is from down feathers.  I have gotten rid of all the down, and my breathing tests have improved, but I am still on Oxygen with activity and sleeping.  (Since 2017).  I walk on my treadmill every day or go to pulmonary maintenance to exercise.  I did not know that scarring was not permanent.  Should I go to JH for a second opinion?  I am going to check out  industrial hygienist and see if there are any in this area.

I know that much research is being done on drugs to actually remove the scarring, but nothing definite yet.  I would appreciate your imput.

[Charlene Marshall]

Hi Lynn,

Thanks so much for your contributions to this topic thread! I know your post was to Robin, although I read it with interest as I too learned a lot regarding the industrial hygienist being able to identify organisms known to cause various ILDs/HP. I’ve pretty much “given up” on finding out why I got IPF, but rather like to educate myself to share this knowledge with others, ie. I didn’t know that down feathers could be so problematic! I also had no idea that the scarring wasn’t permanent, wow, so glad to hear you’re improving 🙂

Thanks again for sharing, and hoping you find some interest out of the report Robin has…

Charlene.

[Charlene Marshall]

That would be wonderful Robin, thank you!

I am simply just curious now, so please don’t create any extra work for yourself in connecting back to me with an answer. What an interesting role that would be though I think, an industrial hygienist. Take care and hoping you’re feeling as well as possible.

Cheers,
Charlene.

[paula]

That is awesome Robin

Before my doctor sent me to Boston for a second opinion did a whole bunch of blood work. The tests came back with some interesting stuff and he was giddy as heck thinking that while he still felt I had IPF, what was causing it was something that would allow me to live a lot longer than previously thought. One of the tests found out that I am allergic to pigeon poo. Go figure. lol… Anyways to confirm he wanted to have a large biopsy done.

The biopsy came back that I definitely have IPF, the kind that gives you a short life span.

Off to Boston I went, and they agree that I have IPF but I definitely do not fit the normal traits. I had to laugh as I have had doctors tell me that I am an enigma. I never follow the normal traits.

Sometimes I get frustrated when they seem to be scratching their heads about my diagnosis but kind of hard to dispute it given I am now on oxygen, and my last pulmonary function test was a very large decrease in numbers. I too have lost over 20 lbs but sadly that has not improved my breathing.

But I am very happy that you are doing well and your right people need to get second opinions. Just to make sure.

Paula

[Charlene Marshall]

Hi Paula,

Nice to hear from you, thanks for sharing a bit of your experience with Robin!

Do you know when you’re off to Boston next to discuss the next steps/possibilities in the management or treatment of your IPF? Just curious as I know you’d mentioned this previously although I can’t remember – thanks to under-oxygenation! I certainly agree with you about the importance of second opinions and am glad Robin is considering one as well.

Take care,
Charlene.

[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

[Lynn Schmitt]

Robin, this is Lynn, AKA Dogwood.  I would appreciate any information you have.  My email is [email protected].

Thanks so much!

Lynn

[Kate E]

Robin, I would also really appreciate seeing the report from the industrial engineer if you’d also be comfortable emailing it to me. I was diagnosed with HP with fibrosis in 2012, and it has slowly progressed. I’ve never had my house tested, tho’ I’ve considered moving more than once. It simply hasn’t worked out to do that. I wonder how you found the engineer that you hired? Thank you for anything that you’re comfortable sharing. I really appreciate having happened upon this thread this morning. My email is: [email protected]

Thanks again,

Kate (in Wisconsin)

[Charlene Marshall]

Hi Kate,

Really glad you stumbled across this post as well, especially if it will be helpful in potentially hiring an industrial hygienist to determine if your home is optimal for your lung condition. I hope it provides you with some answers, and I am really grateful to Robin for mentioning this to the forum. Sending you best wishes!

Charlene.

[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

[Charlene Marshall]

Hi Robin,

Thank you again for sending this through to me – I am eager to spend some time reading up on the reports and costs associated with finding out such valuable information. You must have been so relieved when your contractor was willing to do the repairs/work to remove the organisms causing you respiratory problems? Hopefully this increased their awareness too, wow!

Will you ever have the industrial hygienist in to test again in future, or is it a matter of being removed and then the problematic organisms won’t return again? Thanks again for sharing, I think I am going to look into having something like this done in my home, and if it turns out that there aren’t any air quality problems then I consider it a good investment, and if there are, then I can focus on repairing them.

This was really helpful!
Regards,
Charlene.

[Ellen Haley]

Robin and Charlene thanks for this discussion. Robin hope I am not too late to the discussion. I would appreciate receiving copies of your reports and costs as well as how you found an Industrial Hygienist. Email:   ehaley3 @stny.rr.com

I too sought a second opinion at Johns Hopkins after being diagnosed with IPF in my home town. Doctor at JH diagnosed HP and highly suggested I move from my home which is in the country next to a lake. Extensive Blood tests they did revealed no positive antigen.  Selling a home and moving is no easy job, especially if we don’t know if it will make a difference.

I have removed all down pillows and comforters (that I have been using for over 30 years) and put in another air purifier. I have received quotes from $500 to $1,500 to have air quality tests done in my home.

Robin, Any information you can pass on to help make decisions around this HP diagnosis would be very welcome. Thank you , Ellen Haley

[Charlene Marshall]

Hi Ellen,

Thanks so much for getting in touch with us, and for your contribution to this ongoing discussion… very interesting, isn’t it? I believe Robin forwarded you the email as well, I am going to spend some time looking at it this week to see what I can come up with in terms of what needs investigating in my home (if anything). I don’t have HP, but IPF and no known cause, hence the idiopathic.

I am curious Ellen, did your doctor give reasons for you to move from your home, or was it because it was beside a lake and the potential for mould/swamp damage to occur? I agree with you, moving is not easy and can’t imagine being told to move especially when you aren’t sure if it will make a difference for you. Is yours an old home? Sometimes that can be enough for doctors to suggest a move too.

I look forward to continuing this discussion, and hopefully Robin’s report sheds some light on the situation for you Ellen.

Take care,
Charlene.

[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

[Charlene Marshall]

Hi Robin,

Ah, sorry, I hadn’t read your reply yet about having the industrial hygenist come back into your home now that the renovations are done, when I’d asked about this in my previous message to you. I completely agree – what a peace of mind for your lungs, knowing the air quality has been improved. Please let us know what they say!

I know a friend who works with a 5-star, really well-known company when it comes to home damage due to smoke, water, etc. and mould as well. I think I’ll see if they can recommend someone to come in and do an assessment. My home is only 5 years old, but like you said – definitely worth the expense to have that peace of mind.

Thanks again,
Charlene.

[Ellen Haley]

Thanks again Robin,

One of the companies  I talked with suggested a short air Sampling done in one visit the other suggested a 7 day air sampling, stating that those that suggest a short sampling do not allow a complete picture of indoor air quality.  I have not yet made a decision and may try your idea to get a third estimate.

[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

[Ellen Haley]

Hi Charlene,

In reply to your Jan 6 question the Pulmonologist suggested moving to new construction, something above ground level. She thought that in the woods, on a lake created too much exposure to mold and moisture.

She did agree that running dehumidifiers, adding another air purifiers and getting rid of down comforters and pillows should help.

I am still looking into having testing done on the air quality in my home  Robin’s comments have been very helpful

 

[Charlene Marshall]

Hi Ellen,

Thanks so much for your reply, and I hope this note finds you doing well!

Really interesting that your doctor suggested a move to a new construction fully above ground. Wow, I can’t imagine the potential exposure of folks who are living on swamp-type lands…. I am sure there are many! Are you looking into moving if the air quality reports something concerning? Sorry for all the questions, I am just always curious about how people proceed with managing this disease and different doctor’s orders. I agree, Robin’s post was very helpful for me as well!

Charlene.

[Mary Osullivan]

Hi Robin! I too have Pulmonary Fibrosis and also have HP. I would also like a copy of that report if possible. We did have someone in to check the air quality, but he came up with nothing. He was not an industrial hygenist. I do need to pursue this however cause I think this is the cause of my constant cough. I didn’t know the scarring wasn’t permanent either. My email is [email protected]. I really appreciate you taking the time to send us copies of this report. It gives all of us a new hope.

[Charlene Marshall]

Hi Mary,

I know your post was to Robin, however, I just wanted to say hello and welcome again to the PF forums! I’m glad her post gives you some hope, I found it very informative as well. If you do have an Industrial Hygenist in to check your home, do you mind sharing the results with us and your experience (negative/positive)?

Thanks and enjoy your day!
Charlene

[Kate E]

I’m just getting caught up on this discussion. Thanks to everyone who’s part of it so far, and especially thanks to Robin for sharing your report and experience with having your house tested. Just a few comments for now…

Ellen, I think it’s interesting that your pulmonologist would have recommended moving to new construction. My lungs react incredibly badly to the kind of off-gassing that comes with new construction, and that would never be an option for me. I had also used so many down-filled things for decades (jackets, vests, comforters, pillows, etc), and it wasn’t until I got to my 2nd lung doc that I understood that I really needed to get rid of everything with feathers.

I do live in an older home with a basement, and over time I’ve thought that moving to a condo that would be at least on the 3rd floor above ground might have been a smart thing to do, but there’s so much that goes into the decisions as to where and how we live. And it seems that so many folks on other online support groups (for HP) have moved, and it hasn’t seemed to help. For me there just haven’t been simple answers to some of the questions that arise with HP, esp. with unknown antigens.

Wishing you all the best in this new year.

[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

[Charlene Marshall]

Hi Kate,

Thanks for your contribution to this popular topic thread – I agree about it being a big undertaking without certainty that moving would even help folks with HP/IPF. It also has me concerned that some doctors would recommend moving, whereas others wouldn’t but it does sound like a consistent motion for folks to get rid of down/feathers from their home. I should take a closer look at this and remove them all from my home. I don’t use a lot, but right now can think of a few down pillows and a vest that I have too! Do you feel like doing this has helped you?

Wishing you all the best and thanks for being part of this community!

Charlene.

[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

[Charlene Marshall]

Hi Robin,

Thanks for circling back to this conversation for all of us – we’ve found your post  very helpful and informative!

Did your doctor (the second one) alleude to there being more than one type of scarring, some being permanent (ie. scarring with honeycomb) and some not? Really interesting to learn more about this if so. I am no doctor though, so maybe I am “simplifying” this too much, as I can’t imagine it is as simple as that? 🙂

Please do keep us posted on how your follow up goes at Johns Hopkins, I am curious to know and have my fingers crossed for you that it reveals really good results! Really appreciate you Robin, thanks again!

Charlene.

[Mary Osullivan]

Hi Charlene! Thank you for the welcome!  I was diagnosed with PF 4 years ago by my pulmonologist. It was a complete surprise cause the appt. was for sleep apnea, and that’s when he heard the Velcro sound. I had no symptoms prior to that. After the first year I went back for the breathing test and he said I had lost 25 percent of lung function. I didn’t know Napricin (sp) was in Aleve and I had continued to take 2 pills a day due to hip problems. I stopped the Aleve immediately. Two years later the fibrosis has not progressed beyond the 25 percent loss, but now they have detected Hypersensitive Pneumontitis (sp) as well. Still looking for answers.  Have another breathing test with the pulmonologist tomorrow and hoping to get some answers.

[Charlene Marshall]

Hi Mary,

Thanks so much for joining us, and sharing a bit of your experience with us on the forums. I certainly wish it wasn’t PF that brings us all together, but this forum community is filled with wonderful people! I can’t imagine how much of a surprise it would have been to hear about your IPF diagnosis when thinking it was sleep apnea issues … had you heard of PF before that? I had no idea what this disease was before the doctors thought I had it when I was 28, and 13 months later, confirmed my diagnosis. Do you think the ingredient in Aleve worsened or is linked to the development of your PF, or 25% decrease in lung function? I’m glad it hasn’t decreased anymore, but I can imagine its frustrating to be told you have HP as well. Goodluck at your follow up appointment tomorrow, I’ll be thinking of you! Please let me know how it goes, if you feel upto it, and wishing you well!

Warm regards,
Charlene.

[Kate E]

Mary, I’m very curious about your reference to Aleve. Did your doc think the Aleve had been a player in your PF? I haven’t heard of that before.

Charlene, I don’t know if getting rid of the down items has helped or not. Not that I can tell in any discernible way, but exposure to birds and feathers is the most commonly identified cause of HP, so it only makes sense to take that precaution. One of the commonly used names for HP is ‘pigeon breeder’s disease’, tho’ there are many other possible antigens, and many people never know what got their HP started. (forgive me if I’m writing things that you already know)

with care,

Kate

[Charlene Marshall]

Hi Kate,

Thanks so much for your reply, and no worries at all re: sharing the information about the down feathers! I actually didn’t know about how common of a linkage there is between HP/ILDs and down feathers. I always learn so much on these forums from our members, so I am going to spend some time this weekend getting rid of my feather pillows I think. As much as I love them for comfort, I want to optimize the best exposure for my lungs.

Thanks again for sharing, and I hope you’ve had a nice week!

Charlene.

[Lynn Schmitt]

This is Lynn. (Can’t remember my login details)
To all who have responded and Robin. I am very curious about the honeycombing vs. other scarring. Also, I will see my U. Ky. Doctor on 1/24. Should I ask for extensive blood tests to find the allergen, go for allergy testing, or go With The premise that down feathers is the culprit?
I looked up Napricin, and it does affect the lungs in certain people. So much to learn.
I am living in Lexington, Ky. now, but planning on moving back to my home in Paintsville, Ky.
I was planning on remodeling there (master bed & bath downstairs), but now I am second guessing until I get testing on my home.
I am in a real pickle. Any advice is appreciated!

[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

[Charlene Marshall]

Great suggestions Robin, thanks so much for your thoughtful and thorough reply to Lynn. We all can learn so much from one another!

Lynn, have you had any progress on getting an industrial hygienist into evaluate your home? I know it is a big undertaking for sure, and I’m just asking out of mere curiosity 🙂 I would also ask the doctor for the screening test that Robin suggested, and not be worried about advocating strongly for your need/desire to have this. Goodluck at your upcoming appointment, I hope it goes well and we’ll be thinking of you. Connect back and let us know how you’re doing if you can.

Warm regards,
Charlene.

[Kate E]

Hi, Lynn,

I was diagnosed with fibrotic chronic HP in 2012 based on the results from a lung biopsy done here in Madison, WI, and then the sample was sent to Mayo for confirmation. I had some blood work done to identify an antigen, but it was all ‘unrevealing’. With hindsight, what I would have done differently at the time was to actually go to Mayo for their opinion about treatment plans, and I would have had my house tested thoroughly for mold(s).

He has since retired, but back in 2014 I was able to have a consult with a pulmonologist here who was considered to be a regional expert on HP. His feeling was that this may have started for me when I was a teen (I’m now in my 60’s) when my brother raised pigeons in our garage. What Dr. Meyer said was that, if you have the genetics for this, it can take very little to get it started, and then it can ‘simmer’ for years until it becomes more full-blown. Also, other exposures can add to the problem.

So, for me, I feel that the pigeons may have flipped the genetic switch, but then years of remodeling old houses added to it significantly with exposures to moldy basements and also all the fumes (esp. paint) that come with remodeling. I painted a LOT of interiors and this was well before paints got at least a little better.

I don’t mean to make this such a long story, but I guess the point I’m trying to make is that I don’t think it’s always just one thing, and when your lungs and immune system have gotten reactive in this way, I think you have to be particularly careful of what might set it off/ make it worse. On one of the other online support groups for HP, 55 people responded to a survey question about ‘Do you know your trigger/antigen?’ I realize that is a very small sample, but  41% said no. Almost 30% said birds, about 18% said mold, a few said dust, and about 7% just marked ‘other’. Unfortunately, the survey didn’t allow folks to mark more than one option.

In one clinical review article that I have, though, from 2012, there is an extensive list of causative agents that ranges from moldy shower curtains to hot tub mists, tho’ everything listed falls into 3 categories: fungal and bacterial, animal proteins, and insect proteins. And like you, I also looked up Naproxen Sodium/Aleve and was very surprised to see that it can affect the lungs. Yes, so much to be aware of, and it can be both daunting and overwhelming.

I would be very carefully about remodeling, both in terms of exposure to molds if they’re there and also exposure to fumes and off-gassing from the products installed. Folks seem to do better if they move out while that is happening, but that isn’t always possible.

Sorry for being so lengthy, and I hope there’s something here that’s helpful. I would get as much testing/info as you can, both in terms of blood work and also with your home.

All the best,

Kate

 

 

[Charlene Marshall]

Hi Kate,

Thank you so much for your thorough reply to Lynn! I found what you shared both informative and interesting, so I am confident that others will too, and appreciate the time you took to write it all out for us. Sounds like you have lots of insight into HP, and I’m glad you’re on our forums as we get questions about HP quite a bit.

You highlighted some things for me that I want to check on in my home in terms of exposure (ie. shower curtains) and ensure they are clean/checked on regularly, so thank you for that too!

Have a great weekend and thanks again for being part of this amazing community!
Charlene.

[Kate E]

Robin,

Could I ask about how many things were tested for in the HP screening blood test that you had at JH?

thanks,

Kate

[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