Bird fancier's lung

[SherLar]

I have a rare lung disease called familial pulmonary hypertension. It stinks. It took away my career, my body, my mind, and just about everything I loved to do, including hobby farming. So then when I did not die, I took up finch and had the walk in aviary that brought such peace to me. Then I fell in love with our B&G and G2. A few weeks ago I because very ill and the Dr says I have hypersensitivity pnuemonitis, (also a bit rare) most likely from the two parrots. We actually have another B&G that we recently bought, just a couple weeks before I became so ill. We are trying to rehome him first, since he is just now opening up to us.

I have cleaned out chicken coops for years, with turkeys, geese, ducks, quail, peacocks, everything. Never an issue. We also had terrible flooding here and the basement walls and floor have leaked and molded. My Dr believes it could be either one that caused such illness and are very dangerous to me. However, she is not interested in helping me make sure it is in the birds or molds, but for me to get rid of both. I was originally told that being around birds and animals was no issue, but who would have ever guessed I would find a second unrelated lung disease. Not many people get either one. I just had to push the limits.

I am bonded to my birds, as all of you are. My Dr just doesn't get it. She does not do pets. Just seems whenever I can find something new in my life to love and enjoy, I have to give it up. I do not want to live in a damn bubble. I also want to live.

Larry suggested I reach out to you people about bird fancier's lung or hypersensitivity pneumonitis and see if anyone knows anyone who has this or suffers from it, so that maybe I can learn how they were able to determine the actual culprit to the problem.

So I am not looking for apologies, or sadness, but reaching out to find help in finding causes and figuring this stuff out. I have cheated death for some time now. And I would love to be able to keep my parrots if at all possible. Right now they are segregated from me and are on a completely different air system so not even the air they have mixed with mine -- addition to the house before we got it.

sherri

 

[TikkiTembo]

Hi Sherri,
I'm not familiar with bird fancier's lung, other than what I've read. We also have poultry in addition to birds. Just sending a hug your way. I'm sure you'll get some great advice on this forum!

 

[Lady Jane]

Good for you reaching out.

 

[SherLar]

Thanks. I have reached out to Simon777 who fears she has this. Hopefully we can figure stuff out and hopefully she does not. But maybe we can find tings that can help. I was born into, and grew up in, medicine. And Drs typically are not sympathetic to patients, especially with my medical background, pharm tech, RRT, BSN OCN, microbiology minor etc etc. So my hopes is to find actually people with heart. And because this disease is also hard to diagnose, the hypersensitivity pneumonitis and it's true culprit, wanted to see who was out there. Yes, regardless of the cause, be it mold or the bird droppings, it can be deadly if one does not rid themselves of the cause. And in the severity of what I got hit with, it could be. But hopefully I figure it out and take care of things. I just don't want to jump to getting rid of our parrots just in case it is them.
sherri

 

[Lady Jane]

I needed a chest X ray for a medical test about a year ago. Radiologist saw 2 nodules that were not there before. My doc is a wait and see guy so we decided to take a chest film every 6 months to look for growth. I have 2 budgies and a chronic cough. Its sure is scary. I am going to wear a mask when cleaning cage. So i have fears also and a medical background as RN for 35 years. Oh and i never smoked cigaretts.

 

[Clueless]

@SandraK

Didn't you have some sort of a scare???

 

[SherLar]

a chest film every 6 months to look for growth.

Dianne. Yes, nodules are scary, and you being a nurse know that they can go both ways. Waiting and not knowing is such a hard job. Probably the hardest job we can have. And how has the more recent x-ray? And you know that the budgies have less dander and poo, so the chances are low that your birds have anything to do with it. BFL looks like a whole bunch of inflammation on a CT, not usually nodules. And no, I am in no way saying what you are facing is any less scary. It is. It is very scary. We love to breath and we want to live.

I have thought about wearing a mask so that I could visit my birds. But I am not sure if a mask is enough. Those expensive respirators that one wears when working with toxic gases and fine dust might, but then I would look like an alien and probably scare the birds out of their minds. Oh, and since I wear oxygen due to the PAH, I guess that would not work. Even the TB masks would leak because of the oxygen tubing. I don't know where to go, and like I said, my Dr lacks a bit of compassion and is not really interested in trying to help figure things out. She just wants me to get rid of anything that could have caused it. It could simply be the mold from the basement with all the local flooding or something else I ran into in the environment. And yes, we have contractors now working in our home on different fronts to try to eliminate some possible causes, but it is slow going. I used to remodel and do the work myself and friends as a hobby. No longer can. Frustrating.

And like Hankmacaw said in Simon777 post, there was a woman on here some time back with BFL and she got rid of the birds and has since died. So either she died from other causes, or getting rid of the birds did not help. She may have had problems long enough that it scarred her lungs and could not repair.

Most likely I will not find anyone here, because if they did have BFL, they would have rehomed their birds and being on here would have been a painful reminder. But it does not hurt to reach out.

sherri

 

[Lady Jane]

Thanks Sherri. I see my doc end of August and there has been no follow up X ray yet. Yes, I was in the medical world but I don't like all the testing docs want to do. In two months I have a BX of remaining thyroid glad. Have been fighting suspected vestibular migraines which are debilitating to say the least. The vertigo makes me unable to even walk when it strikes. So I have enough going on for 1 person right now.

 

[SherLar]

WOW. You are the second person I have met with that. The nurse I worked with suffered for 2 yrs and then they finally figured it out. The good news, they fixed it and her life is so much better. I can ask her what they did if you are interested. And I do understand the distaste for much of the medical world. It can be cold.
sherri

 

[Desi]

I have a rare lung disease called familial pulmonary hypertension. It stinks. It took away my career, my body, my mind, and just about everything I loved to do, including hobby farming. So then when I did not die, I took up finch and had the walk in aviary that brought such peace to me. Then I fell in love with our B&G and G2. A few weeks ago I because very ill and the Dr says I have hypersensitivity pnuemonitis, (also a bit rare) most likely from the two parrots. We actually have another B&G that we recently bought, just a couple weeks before I became so ill. We are trying to rehome him first, since he is just now opening up to us.

I have cleaned out chicken coops for years, with turkeys, geese, ducks, quail, peacocks, everything. Never an issue. We also had terrible flooding here and the basement walls and floor have leaked and molded. My Dr believes it could be either one that caused such illness and are very dangerous to me. However, she is not interested in helping me make sure it is in the birds or molds, but for me to get rid of both. I was originally told that being around birds and animals was no issue, but who would have ever guessed I would find a second unrelated lung disease. Not many people get either one. I just had to push the limits.

I am bonded to my birds, as all of you are. My Dr just doesn't get it. She does not do pets. Just seems whenever I can find something new in my life to love and enjoy, I have to give it up. I do not want to live in a damn bubble. I also want to live.

Larry suggested I reach out to you people about bird fancier's lung or hypersensitivity pneumonitis and see if anyone knows anyone who has this or suffers from it, so that maybe I can learn how they were able to determine the actual culprit to the problem.

So I am not looking for apologies, or sadness, but reaching out to find help in finding causes and figuring this stuff out. I have cheated death for some time now. And I would love to be able to keep my parrots if at all possible. Right now they are segregated from me and are on a completely different air system so not even the air they have mixed with mine -- addition to the house before we got it.

sherri

Hi Sherri,
I am a retired physician, recently diagnosed (July 2020) with Hypersensitiviy Pneumonitis/Extrinsis allergic alveolitis via a bronchoscopic lung biopsy.

I too am an animal-lover and raises sheep and donkeys. Peafowl hang out on my patio. I've also raised chickens and a Red-masked conure in the remote past. I am an avid birder and have travelled to Central America, Australia, and Africa to see birds.

My pulmonologist loaded me up with steroids, but one cannot stay on them forever due to side effects like osteoporosis. I have an appointment to see an allergist/immunologist, but in the meantime have done some computer research.

The Mayo Clinic offers testing for various antigens that cause HP, including parrots and parakeets. There are also IgG panels for various molds, but unless your serum is tested against the specific mold to which you are allergic you will get a false negative. Keep in mind that the allergy in HP is IgG mediated, not IgE mediated, so skin tests are useless. I cannot give you medical advice since I am retired, but if I were you I'd at least test for the likely bird antigens. And you need to have a professional company do mold abatement in your house regardless.

Presently, I am in search of a reference lab or researcher who will test allergens/antigens in my immediate environment. If you get this message and respond to it, I will be happy to keep you posted on my progress. Currently, I am short of breath with any exertion and chronically fatigued. These symptoms started about the time the peafowl appeared in the neighborhood, about 3 years ago, and they've become progressively worse. None of the available lab/blood tests look at peafowl antigens, and I do not know the level of cross-reactivity. I am still researching...
-Desi

 

[Dona]

@Desi, this thread is over a year old and we haven't seen Sherri for a long time. Hopefully others will chime in. I'm so sorry you are sick.

 

[Desi]

@Desi, this thread is over a year old and we haven't seen Sherri for a long time. Hopefully others will chime in. I'm so sorry you are sick.

Thank you, Donna. I am new to this group and saw that Sherri's post was over a year old. But I thought that even if I can't help her maybe I can help other bird and animal lovers. It's a shame to give up the pets we love unnecessarily or to have to relocate. I have lived in my home for 35 years, so I'm sure it has some mold in it (all older homes do). But unless I'm allergic to a specific mold, there is no need to relocate. -Desi

 

[Love My Zons]

Wow, I missed this all together. I just hope Sherri is okay!

And to you @Desi I hope you will be okay too!

 

[Desi]

Wow, I missed this all together. I just hope Sherri is okay!

And to you @Desi I hope you will be okay too!

Thank you, Claire. The HP was caught before it could cause fibrosis (scarring) within my lungs. There is ongoing inflammation, however, so I have to determine the etiology and eliminate it...or relocate from my home of 35 years. -Desi

 

[Love My Zons]

Thank you, Claire. The HP was caught before it could cause fibrosis (scarring) within my lungs. There is ongoing inflammation, however, so I have to determine the etiology and eliminate it...or relocate from my home of 35 years. -Desi

Well I hope it can be found out to the cause. Have you had your home checked for mold? Not saying you do, but HVAC systems can be a cause as well.

I often think to have all that stuff replaced. And seal off the crawl space under the house. Homes here have no basements. And it's 27 years old now so too old to have been built on a slab.

 

[Hankmacaw]

Hi @Desi I'm very sorry about your diagnosis of pulmonary hypertension. Birds - particularly macaws B&G's are the most susceptible to Pulmonary Hypersensitivity Syndrome. I noticed that you have 2 B&Gs and a G2 and just want to be sure that you are aware that putting New World birds (your macaws) with an Old World bird (your G2) is the formula for pulmonary hypertensive syndrome in macaws and other New World birds.

 

[Desi]

Hi @Desi I'm very sorry about your diagnosis of pulmonary hypertension. Birds - particularly macaws B&G's are the most susceptible to Pulmonary Hypersensitivity Syndrome. I noticed that you have 2 B&Gs and a G2 and just want to be sure that you are aware that putting New World birds (your macaws) with an Old World bird (your G2) is the formula for pulmonary hypertensive syndrome in macaws and other New World birds.

Hello Hankmacaw. I think you have confused me with someone else. I have Hypersensitivity Pneumonitis, not pulmonary hypertension. I do not own B&Gs or G2; rather, I suspect that neighborhood peafowl that love to hang out on my patio might be the allergens/antigens to which my immune system is reacting. I did own a Red-masked conure for a number of years, but he has been deceased a while. -Desi

 

[Lady Jane]

After re homing my two budgies I donated their nice cage to Phoenix Landing. One of the volunteers came to get it. She has the bird keepers lung disease and works for PL but not with the birds. She said she was giving a boat load of steroids and it helped he tremendously so much so she feels cured. However she cannot go where there are any kind of birds ever again. I wish you well.

 

[Tser]

I'm sorry, Desi. I hope you figure out what is triggering your symptoms, and that it can be dealt with.

My mom had hypersensitivity pneumonitis. It was devastating.

She was so sick for so long and no one knew what it was. This started in late 1999, early 2000, and it took almost two years for her to be diagnosed. She almost died; she was in the hospital for weeks several times, with the doctors just desperately trying to figure it out. Once while she was driving us home from the stable we worked at, she was feeling "very out of breath" so we stopped at urgent care. They checked her oxygen saturation and it was so low they called an ambulance to take her to the hospital immediately. They were horrified she'd been on the road, because she was very close to losing consciousness.

Tests finally revealed that she had HP, specifically to certain birds, though she also reacted to proteins from rodents. Some birds were more severe reactions than others. Budgies were one of the worst.

When she was finally diagnosed she was told she had to move out of the house we were in, because it was contaminated with bird dust. I'm crying just thinking about this again, of how sad she was. She moved into a trailer while my dad stripped the entire house. Everything fabric that could've caught bird dust was thrown out or given away. Curtains, furniture, carpets. The duct work was completely redone.

And we had to rehome our birds. We had budgies, doves, conures, and ChuChu, my African grey parrot. I couldn't bear to be parted with ChuChu, so even though I couldn't afford it, and I didn't want to leave my mom, ChuChu and I moved out. I couldn't keep them all -- I could barely feed myself at the time (but I promise ChuChu never lacked for healthy food). It was a really rough time, and I struggled, emotionally from the loss, from having to leave my mom at that time, and keeping myself afloat financially.

My mom was crushed... she developed severe depression and very very dark thoughts, losing her birds.

After that... she recovered. She could breathe! She could ... *do things* again. Like standing in the kitchen was a new miracle. Let alone working at the stable where we volunteered. If she was around birds -- or even decorative feathers -- her lungs reacted badly again. It was really hard for her for a long time. She missed ChuChu so much, she would stand outside my house and talk to her. But my mom redirected her passion into her horses, which had been the focus of her life when she was younger, and I'm so glad she could. Nothing ever heals that kind of wound, but she found community and meaning again.

A decade ago I started coughing. Really... really coughing. Like strangers stopping and asking if they should call an ambulance coughing. I started getting winded walking just a block. It was beyond terrifying.

At the doctor, even though I didn't want to know, I said I should get checked for HP. Thank heavens... it wasn't. It's just adult onset cough variant asthma... yay. Haha. Still annoying as all heck, and we had to have all the carpets removed and winter's really hard... but who cares, I still have ChuChu.

I think some people underestimate bird keeper's lung, with the idea that it's a bird allergy, and that allergies are just something you deal with, take some meds and move on with your life.

There's also this idea that HP only happens if you have "dirty" cages and don't take care of your birds, or if you're a hoarder, or work on a factory farm or something. There's no telling how much or how little exposure will trigger HP in a susceptible person. Someone could get it from keeping one budgie in a pristine cage, while another person might only get it from working in homer lofts for years.

But I will always always tell people who love birds and want to keep them for the rest of their lives to take care to limit their exposure as much as possible. Use HEPA filters. I have them in ChuChu's room and also in my bedroom. Do not sleep in the same room as your birds. I know this one is hard for a lot of people but for the sake of a lowered chance of having to give up birds entirely, I believe it's important. Breathing those proteins all night is one of the more easily avoided major exposure routes. I suggest a baby monitor in the bird room to make sure they're safe.

Especially when there are other threats to our lung health out there right now... take care of yourselves.

And again Desi, I hope you figure it out, and feel better.