CHP ~ Chronic Hypersensitivity Pneumonitis

I suspect that there aren't a lof of you out there with Chronic Hypersensitivity Pneumonitis, but I would REALLY like to hear from those who DO have CHP about your experiences from first symptoms, DX, meds, O2 use, progression of symptoms, having or finding the 'right' doc, etc, if you would be willing to share. Also would like to know if or how you were able to identify the antigen in your case. Those with farmer's lung & bird handler's lung may have had an easier path to follow. It is my understanding that these two antigens are the most frequent culprits in CHP.
Beside SOB & velcro crackles, what symptoms do you have and how often?
Thanks for sharing. This seems to be an excellent place for a plethora of information.

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I first was diagnosed with this but after exhaustive surveys and interviews with the docs at Vanderbilt, they don't believe it is the case. One of the reasons being that we've moved a lot and have never lived any one place long enough for environment to be a factor. So no antigen was found to predict the fibrosis. Hope you can find yours so that you can get away from it and stop the fibrosing.

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Hi Arras!
I fell down! Honestly, I am a single mom who had to work, couldn't take time off and I got so sick they had to take me from work to an ER(at a now defunct hospital) in an ice storm. They only had 2 docs at hospital. They released me after a week, said I had pnuemonia, didn't wait for test results. Got in my front door and the hospital called told me they thought I may have a PE(pulmonary embolism) and said I should come back. My children called another ambulance and got me to a different hospital, where my pulmonary doc is. It took a week to find the fibrosis after they started clearing up other things. That was 5 years ago. I started with sarcoidosis at least 28 years ago and didn't really pay attention. The sarcoid is what got me. Any way I don't think mine mattered where it came from I have this path to follow, it's hard, but it can be done. God is helping me. He carries me most of the way. He put the folks on here in my way and yours and they are the best, they can all give you good info. Hang in there and God bless!
Pam

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Arras, my pulmonologist originally diagnosed my sarc and PF as hypersensitivity pneumonitis, and right now I am confused if it still is a contender. At that time, they believed there was a bacteria or fungal relationship, but pathology from the BAL showed sarc, so did this cancel out,I don't know. Anyway, I worked in a graveyard, digging , and all that dust, organic, and of course we had copious amounts of ducks, canadian geese, and bird droppings all over the lake area,and guess who was the genius to do clean up, correct, yours truly!!

Long and short, with stage IV PF to me it don;'t matter no mo, it becomes a rather moot point, hope this was somewhat helpful, all the best, Bob

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decopeg10, 123sugarln & PamelaK,
How were you DXed? Do you have a 'definitive' DX, or have the medical professionals involved in your care come to a conclusion based on various sources including, xray, chest CT, bronchoscopy, lung BX?

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I had all of the above done including an open lung biopsy in Dec 2008. Not the best Christmas present I've ever gotten. Had five different pathologists look at the biopsy specimens in Chicago, Mayo AZ, Mayo MN and two at Vanderbilt. The only thing they agreed on was pulmonary fibrosis - they all came to different conclusions as to why, which kept me out of any clinical trials...

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My pulmonologist found through the BAL the pathology to support Sarcoidosis. They were able to take sufficient samples, 7 I believe, though if they unable to obtain enough, the open biopsy was next.

Decopeg says and it's true, now that there is pulmonary fibrosis, I think it's a moot point as to how, etc. Point now is to learn how to live a new normal, which is probably one of the greatest challenges i will ever face, All the best, Bob

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Cleveland Clinic DXd my hypersensitivity pneumonitis in May of this year as cause of my interstitial lung disease inferring it from the various tests and a second bronchoscopy.

My orginal DX from Chicago NW was pulmonary sarcoidosis (Feb. 2010.) This was a presumed DX after a brochoscopy in which they collapsed a lung and then the NW lab lost the biopsy. After two years I went to Cleveland. Their biopsy ruled out sarcoid. The actual antegen has never been conclusively identified. The Cleveland doc (Dr. Culver) says that hypersensitivy can be "turned on" by specific antegen but then seems to react to other antegens.

Decopeg said she's lived all over. Well when I first noticed the SOB, I was living and working in Costa Rica. When it began to be serious, I was in Argentina where the doctors just chalked it up to pneumonia. In between I lived in Chicago 3 1/2 years where my PCP said my SOB was due to getting old and fat - and maybe asthma. (This was before the NW DX of sarcoid)

I suspect it was bird antegen in Costa Rica that was the initial trigger - pigeons are the one constant in all three regions of the world. (There were big green parrots living in the eaves of our office building in Costa Rica. And pigeons overran our apartment building in Buenos Aires.) I certainly still react to down pillows, comforters, etc. But this is the problem -- Cleveland's tests on the bronchial lavage did not show any elevated levels of bird antegens. I stay away from from birds anyway...

I now am on O2 24/7 - 6L. I have pulmonary hypertension. So I am taking Cellcept 3000mg and 40 mg of Prednesone daily as well as Lasix and a potassium pill. I'll be happy to respond to specific questions.

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I'm just glad we get new bodies in heaven.... and just so y'all know, I've got dibs on Cindy Crawford's... lol... : )

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The problem with that Robert is that so many of us go through all those very invasive and in the case of an open lung biopsy, very painful, tests and STILL not have any answers. They couldn't do VATS on me either, so it was a full thoracotomy. It still hurts almost 4 years later .... and they still don't know why I have the fibrosis nor have found any treatments to keep it from progressing... that was time and money that would have been far better spent having fun with my family....

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Thanks all, for your comments and input. I really appreciate your disclosures, experiences and your willingness to share.
Having CHP as a DX isn't moot to me, by any means. If I were going to have been found to have PF anyway, then this is a DX I can live with (pun intended). Technically, PF is a symptom. We think we know the cause in my case (CHP), though not the specific antigen yet. I have my suspicions of what caused my CHP, though for myself and for many, many others, proving it is illusive are best. The most hopeful part is that perhaps we can arrest the PF. My surgeon told me that whatever the cause my exposure happened within the last decade. I have lived only in one locale during that decade, so we've been able to narrow possible offenders down, but nothing is known yet for certain. It may never been definitively known. I have also consulted with an allergist, as allergies have been a lifelong issue for me.
So far, my resting SAT is excellent. Hiking in the morning each day has presented some challenges, but I have finally found a pace on the inclines were I can keep my SAT above 88%. After treatment with prednisone since the first of July, my PFT in early August showed increased diffusion (17%) as well as acceptable % in other areas. I have been tapering the prednisone each week and am now on 10 mg/day. I return to my pulmonologist in 11 days, and we shall see. The best we can hope for is stable.
Next I am going to go to U of Washington to see Ganesh Raghu, MD, for a second opinion, with my pulmonologist’s blessing and with my chest film, chest CT and my VATS BX pathology slides. Having multiple professional opinions isn’t so bad after all.
I wish you each the very best...good to share with others with the probable same DX. Thank you from the bottom of my heart!
Arras

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Hi, I am so glad to find this site. I have been looking for others with this disease. I was diagnosed last year 2011 after 2yrs of being very sick and not being able to find a reason. They first thought that my heart was the problem, because of the SOB. That's great, even though we have a huge history of heart disease in the family. No lung disease. They think that I came into contact with something in the attic while cleaning during a remodel. But they also think that it was due to where we lived. There were 9 different fungus growing outside our home, all causing this disease. No one else in my family were affected. We had a wonderful home in a valley by a river, but there were also swamp lands there too. We had to move. They discovered this by a lung biopsy, very painful, done June 2011, and sent to the Mayo clinic.

I too see Dr. Raghu at the UW. My lungs are now stable, and am off predisone after being on for a year. I live one day at a time, my biggest issue now is that I am hypersensitive to smells and chemicals. Does anyone else have this problem? It is like having asthma super bad, and very hard to go anywhere. Thank you for your posts I really needed to know there were more of us out there. Julie Quilterwoman

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Yes, I am hypersensitive to smells. Perfumes, smoke of any kind, cleaning products (I make my own), any kind of chemical smells, mold & mildew, etc. Doesn't take much to cause me problems.

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Quilterwoman, as an asthmatic I have always been sensitive to perfumes, mold, mildew, exhaust fumes, gas fumes, other chemical fumes, cold air, and cigarette smoke. Since being diagnosed with IPF, the list has expanded to include all aerosol products, and air fresheners. These items take my breath away, cause my chest to tighten (unlike an asthma attack), and sometimes, to cough.

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Decopeg10 and Eldee, Thank you So much!!!

I was beginning to think that I was loosing my mind. I just saw the Dr. and He acted like it was all in my head. He said that I was all better, that my lungs were fine, but I still have to take my meds, and inhalers, morning and night. Sound fishy to you?? Like I was being over dramatic or something. I have stayed away from anything on Asthma just so that I don't know the symptoms, but have been told that I have all of them. Why would someone do this to themselves???? This SUCKS!!! I am only 49 and have always lived an active life. I work with special needs kids and ended up going down in front of them last week, because I couldn't get my inhaler fast enough. Up until this I had never taken medication.

I have become so sensitive to so many things it is hard to go outside and be around people. What do you do?? It is almost impossible to go to the grocery store and forget the cleaning isle and any isles near that one. I use a respirator and masks but what a pain although they work. :(

Thank you for all your help, Quilterwoman

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It is a problem. Most of my friends at church realize their perfumes bother me so they use them sparingly or not at all. If they forget and put too much on, they wave from a distance. There are some people I've had to apologize and walk away from. I make my own cleaning supplies. For the most part I use half rubbing alcohol and half water in a spray bottle. It disinfects quite well and dissipates quickly. Some use vinegar and water but the vinegar irritates me. The only air fresheners I can handle are Glade and Febreze (although not all scents). Mold and mildew start my coughing fits as well.

Your doctor's response of "your lungs are fine" really bothers me. Mine told me that for two years leading me to believe it was all in my head.... until my pft's dropped so dramatically that they had to look further and I ended up with a lung biopsy by a full thoracotomy to get the diagnosis that it wasn't all in my head. My lungs have been anything but fine. Sigh... doctors never cease to amaze me with how little they really do know. I no longer see that doctor. It's hard to find a doc outside the big medical centers who are educated in PF or who are willing to take on a dying patient. I just had a heart to heart talk with my new one and he
reluctantly agreed to help me out. I had to convince him that I realize I will lose the PF war but that I still need a pulmonologist to help with the battles along the way. He knows very little about PF but I sure know a whole lot about it so hopefully between us
we can make it work. With no insurance, the doctor pool grows quite small... sigh. With PF and no insurance, the pool is drained to a puddle.

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Thank you Decopeg,

I too am concerned, although they have made me another appointment with another Dr. to check out my throat. I am glad that you seem to have found a Dr. that is willing to work with you. I have my primary care Physician that I go to she has been wonderful in all of this. She had no idea what this was but has been studying it and is learning fast. What ever I need she is right there. I just love her. I am so blessed that she has stood by me and been so supportive. They even make sure the office is fragrance free when I am due to come, such sweet people. :). My lung function test have always been in the normal range and so have my O2 stats. so they didn't find this until I had had penumonia like symptoms for almost 6mos and lost 30lbs. They had even done CT scans and they showed it but they didn't believe it could be because of all the rest of my test. LOL... Funny how things work out.

Not that I'm mad or anything just a little confused sometimes. Not sure why when the test show something they don't check it out all the way. This was on my test 2 years before my biopsy. By the time they did look it's Chronic. God must have wanted me to slow down. ;) I must say the best thing I did was go to rehab right away. And I have been super pro-active in finding Dr's who are suppose to know about this disease. Even-though I don't follow the rules, LOL..., with my tests that is. Still am having lung function test in the normal range and my O2 is still 99 on my own, 96 walking. Praise God!!! My Church ladies too are amazing and take the time to let me know what they are wearing. LOL...

No matter how you put it we have to take each day one at a time, and be greatful for that. I want you all to know I am so thankful for your posts.

God Bless you!
QuilterWoman

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Wow those are great O2 sats. I'm having trouble keeping my sats up just sitting here - with the oxygen on. Seems like I'm battling yet another bug. Ugh. Try not to be too mad at the docs who first saw it and didn't say anything. There's nothing that really could have been done about it until you started showing symptoms anyway. All you would have done was have two more years to worry about it. ((Hugs)) keep up staying as healthy as you can for as long as you can! Bless you too.... ~ Peg ~

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