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Patient Stories Menu
Below, you will find links to numerous patient stories from around the world. These are all taken from real people who belong to the HP support group who have offered to share their journey with this disease so you may learn.
Mr. B from New Jersey, USA
Mr. B. is a 60 year old man who has been suffering with HP for over 10-years. The 1st 5-years of symptoms were ignored as he thought the lack of concentration, shortness of breath and lethargy were all caused by his lack of exercise and 60-70 hour work weeks. It was only in 2010 when he developed double pneumonia that a lung condition was detected. It took almost 2-years, numerous CT scans, x-rays, bronchoscopy and a VATs Lung Biopsy to finally diagnose his condition as Hypersensitivity Pneumonitis. He also saw no less than 8 pulmonologists in 4 major medical centers before being initially diagnosed.
At the time of the lung condition detection, this patients FEV1 = 115% and DLCO = 89%. By the time he was diagnosed, his FEV1 = 97% and DLCO = 72%. Mr. B., has had 3 incidents over the past 6 years of being hospitalized with pulmonary failure. Today, his FEV1 = 78% and his DLCO = 28%. Mr. B. has been on oxygen 24x7 since 2014, but remained fairly active until 2018 when he took a serious turn for the worse. He is currently awaiting being listed for double lung transplant at Columbia Presbyterian Medical Center.
At the time of the lung condition detection, this patients FEV1 = 115% and DLCO = 89%. By the time he was diagnosed, his FEV1 = 97% and DLCO = 72%. Mr. B., has had 3 incidents over the past 6 years of being hospitalized with pulmonary failure. Today, his FEV1 = 78% and his DLCO = 28%. Mr. B. has been on oxygen 24x7 since 2014, but remained fairly active until 2018 when he took a serious turn for the worse. He is currently awaiting being listed for double lung transplant at Columbia Presbyterian Medical Center.
Ms. S from New Jersey, USA
Ms. S, a 65-year-old female, who became ill in 2014.While on vacation, she noticed shortness of breath when walking uphill or long distances. She chalked it up to being out of shape and needing to lose some weight and when she returned home signed up with a new gym and began to exercise. She noticed however that during cardio she became very short of breath rather quickly and even the trainer at the gym thought it was odd. She then started a year long journey only to discover that she had Hypersensitivity Pneumonitis.
She had never heard of Hypersensitivity Pneumonitis and in fact her local doctors in Norther NJ were also not well educated on HP. The local doctors ruled out many illnesses such as lupus, MS and Lyme’s Disease and even some interstitial lung diseases. But no one could figure out what it was. She saw 2 PCP’s one with a specialty in pulmonology, another pulmonologist, a cardiologist, a neurologist, an ear nose and throat, an allergist and gastroenterologist. She had many tests such as a complete cardiac nuclear stress test, EMG to test muscles and nerves, blood tests, allergy tests, endoscopy and colonoscopy. All test were normal. She then went to Mount Sinai in New York City, a division of the Nation Jewish Health Respiratory Hospital in Denver, and it was there that Dr. Maria Padilla diagnosed her. Dr.Padilla suggested she have her house checked for environmental problems and in doing so, she discovered her home had a high level of aspergillus Penicillium mold in the basement. After having a Bronchoscopy, where 10 small samples of the lung were taken and cultured in a petri dish and they performed a lavage or washing of the lung, it was noted that aspergillus Penicillium was found to be growing in the petri dish. The assumption was made then that this was her antigen.
At this point, she had the basement cleaned up, but not by an industrial engineer, probably a mistake. She was renting her home and the landlord said he would take care of it. Her ignorance let her allow for that but the Landlord only removed visible mold and cleaned those areas, repainting with mold protective paint. He also put in a Hepa Filter. After retesting there was only an 80% improvement leaving a 20% reading still present. Dr. Padilla had said that one must be completely removed from their antigen, if they are lucky enough to know what it is, in order to possibly have a reversal from HP.
There were many cardboard boxes in the basement filled with “stuff” and client learned that mold adheres to cellulose fabric. Ms. S then had her husband replace all cardboard boxes with plastic ones and remove all the cardboard from the basement. Also any other fabric material items, books, record albums, paper etc. This has unfortunately taken her to the present writing of this story. May 31, 2018, about 4 years from the onset of the disease. She is still in the house. Again probably a mistake.
Dr. Padilla, upon finding the diagnosis in 2015 had told Ms. S that she should move from her home. Even though she was renting, this was an overwhelming project for many personal reasons. Her husband was also ill, and she had just made a major move to this home in 2013 and moving would mean she would have to downsize and really get rid of a lot of furniture etc., a huge undertaking for someone who worked full time. She was stifled and assuaged herself with the concept that the readings were only in the basement not on the levels of the house where she lived. She never went into the basement. Dr. Padilla also said to get rid of all down pillows. Never having birds or a problem in the past Ms. S did not do this either.
What Ms. S. learned, with time and learning about this disease with the help of the face book group “Living with HP”, is that she should have probably moved and changed all of her down pillows and comforters to synthetic, as well as gotten rid of down coats that were kept in the house when the doctor suggested this. Because she did not know what the future would hold, and the antigen was only in the basement at 20% and she never went down there, she thought she might be able to regain her health. She also was using prednisone, which the doctor stated would make it hard to tell if it was the move or the prednisone that caused the reversal of the disease. It is important to understand that there were many inconsistencies. Ms. S saw many doctors as she left Mt. Sinai and went then to Columbia Presbyterian. She also went to Denver to The National Jewish Health Respiratory Hospital. All three hospitals have agreed on the diagnosis. However, of the 5 specialists she has seen, 3 pulmonologists, an immunologist and an occupational doctor, each has had their own opinion of what she should do. Some say move, others say moving is not a guarantee, others say it’s not necessary. All have agreed getting rid of the down is important, even though there has never been any issue with bird fanciers lung. Ms. S has noted that she has enjoyed steam rooms and hot tubs over the last 20 years, but none of the doctors have addressed this as an issue. In other words, Ms. S experienced many professionals who really do not know much about this disease and were not able to really guide her short of suggesting she move and get rid of the down. In hindsight Ms. S feels she should have moved and is now trying to do so. She also has gotten rid of the down coats, comforters and pillows. She also is in Pulmonary Rehab now and working to develop a diet and exercise plan, being very mindful of foods that cause or irritate inflammation.
This website is so important because it addresses what all of us who have told our story here did not have. A place to go to really understand these illness and find resources. A place where maybe even doctors can learn how to more appropriately treat their patients and guide them that even though you don’t know if the changes you make will help you, you must try everything that is suggested to you, no matter how difficult because maybe just maybe it will help you have a reversal or become stable from this rare and debilitating disease.
She had never heard of Hypersensitivity Pneumonitis and in fact her local doctors in Norther NJ were also not well educated on HP. The local doctors ruled out many illnesses such as lupus, MS and Lyme’s Disease and even some interstitial lung diseases. But no one could figure out what it was. She saw 2 PCP’s one with a specialty in pulmonology, another pulmonologist, a cardiologist, a neurologist, an ear nose and throat, an allergist and gastroenterologist. She had many tests such as a complete cardiac nuclear stress test, EMG to test muscles and nerves, blood tests, allergy tests, endoscopy and colonoscopy. All test were normal. She then went to Mount Sinai in New York City, a division of the Nation Jewish Health Respiratory Hospital in Denver, and it was there that Dr. Maria Padilla diagnosed her. Dr.Padilla suggested she have her house checked for environmental problems and in doing so, she discovered her home had a high level of aspergillus Penicillium mold in the basement. After having a Bronchoscopy, where 10 small samples of the lung were taken and cultured in a petri dish and they performed a lavage or washing of the lung, it was noted that aspergillus Penicillium was found to be growing in the petri dish. The assumption was made then that this was her antigen.
At this point, she had the basement cleaned up, but not by an industrial engineer, probably a mistake. She was renting her home and the landlord said he would take care of it. Her ignorance let her allow for that but the Landlord only removed visible mold and cleaned those areas, repainting with mold protective paint. He also put in a Hepa Filter. After retesting there was only an 80% improvement leaving a 20% reading still present. Dr. Padilla had said that one must be completely removed from their antigen, if they are lucky enough to know what it is, in order to possibly have a reversal from HP.
There were many cardboard boxes in the basement filled with “stuff” and client learned that mold adheres to cellulose fabric. Ms. S then had her husband replace all cardboard boxes with plastic ones and remove all the cardboard from the basement. Also any other fabric material items, books, record albums, paper etc. This has unfortunately taken her to the present writing of this story. May 31, 2018, about 4 years from the onset of the disease. She is still in the house. Again probably a mistake.
Dr. Padilla, upon finding the diagnosis in 2015 had told Ms. S that she should move from her home. Even though she was renting, this was an overwhelming project for many personal reasons. Her husband was also ill, and she had just made a major move to this home in 2013 and moving would mean she would have to downsize and really get rid of a lot of furniture etc., a huge undertaking for someone who worked full time. She was stifled and assuaged herself with the concept that the readings were only in the basement not on the levels of the house where she lived. She never went into the basement. Dr. Padilla also said to get rid of all down pillows. Never having birds or a problem in the past Ms. S did not do this either.
What Ms. S. learned, with time and learning about this disease with the help of the face book group “Living with HP”, is that she should have probably moved and changed all of her down pillows and comforters to synthetic, as well as gotten rid of down coats that were kept in the house when the doctor suggested this. Because she did not know what the future would hold, and the antigen was only in the basement at 20% and she never went down there, she thought she might be able to regain her health. She also was using prednisone, which the doctor stated would make it hard to tell if it was the move or the prednisone that caused the reversal of the disease. It is important to understand that there were many inconsistencies. Ms. S saw many doctors as she left Mt. Sinai and went then to Columbia Presbyterian. She also went to Denver to The National Jewish Health Respiratory Hospital. All three hospitals have agreed on the diagnosis. However, of the 5 specialists she has seen, 3 pulmonologists, an immunologist and an occupational doctor, each has had their own opinion of what she should do. Some say move, others say moving is not a guarantee, others say it’s not necessary. All have agreed getting rid of the down is important, even though there has never been any issue with bird fanciers lung. Ms. S has noted that she has enjoyed steam rooms and hot tubs over the last 20 years, but none of the doctors have addressed this as an issue. In other words, Ms. S experienced many professionals who really do not know much about this disease and were not able to really guide her short of suggesting she move and get rid of the down. In hindsight Ms. S feels she should have moved and is now trying to do so. She also has gotten rid of the down coats, comforters and pillows. She also is in Pulmonary Rehab now and working to develop a diet and exercise plan, being very mindful of foods that cause or irritate inflammation.
This website is so important because it addresses what all of us who have told our story here did not have. A place to go to really understand these illness and find resources. A place where maybe even doctors can learn how to more appropriately treat their patients and guide them that even though you don’t know if the changes you make will help you, you must try everything that is suggested to you, no matter how difficult because maybe just maybe it will help you have a reversal or become stable from this rare and debilitating disease.
Mrs. G from Connecticut, USA
In 1997 at the age of 35 I moved to NY from CT with my 9-year-old leaving behind my home state and a dissolving marriage.
I moved into my sister's home for what I thought would be a temporary stay of 1 to 2 years.
My sister and her husband lived with 4 dogs, 4 cats, 8 birds, 1 indoor rabbit, and many outdoor Peking ducks with hay everywhere. The rabbit also had hay.
I immediately developed bronchitis the first 3 months of my residency. I had no health insurance. My last ER visit brought to light the severity of my asthma. At least that's what we all thought. I was put on asthma medication. I've had asthma since I was a baby. In CT, it was relatively under control since puberty. With the asthma meds and a local clinic, I was able to control my breathing.
Until 2007, I was diagnosed with moderate obstructive sleep apnea due to weight issues. On my titration visit, my 02 levels fell into the 70s! Alarms and all. I was informed I would be contacted by my doctor about what was next.
Well that never happened, so I had to beg and paw until my CPAP nurse spoke on my behalf to my GP and then a concentrator was added to my CPAP routine, but no one told me why. I asked but got no answers.
I went along like a good patient. Then in November 2011 I got a new GP. I was about to have knee surgery. My weight was at the highest ever. At my pre-surgery checkup, GP noticed my 02 was 92% at rest. He decided to have his nurse take me for a walk especially up some stairs. I had complained of some shortness of breath and chest tightness. I assumed was attributed to my weight. My 02 at the top of the stairs was 82%. On returning walk back 84%. My doctor stated I was going on oxygen 24/7 at 2 liters until I saw a pulmonologist he referred me to within the practice. I was devastated. I refused to go to work with oxygen. I hid it from my coworkers. I carried a small tank and used it only in private.
I met Dr. Klares in December 2011. He did all the right tests. PFTs, CTs and blood work. He told me about pulmonary shunting. I had no idea what that was. He tried to explain in layman's terms. Told me I had a restrictive disease. Ok. His solution, lose weight. Told me my disease was most likely caused by my weight. He also informed me that I tested high for bird antigens and he knew my sister had birds in the house. I was so determined to get off the oxygen I would beg him at each visit. Finally, in January 2012, at rest my 02 was 95% so he allowed me to go off the oxygen. He did not test me on exertion. I admit I was relieved. My sister came to some of my appointments. He never once informed us the birds needed to be removed from the home.
For five years, he concentrated on my weight and I lost slowly. By 2016, I had lost 50lbs. However, once Spring came I was outside walking with my friend for exercise. I thought I would die. My chest was in pain and I could not continue. I had to keep stopping just to catch my breath.
I saw Klares in April 2016, told him what was happening. He decided we'd go for a walk. First without oxygen. Next with 4 liters oxygen. In his office He did not look at me. He said, "This is beyond your weight." (Duh really!!)
He referred me to Columbia Presbyterian in NYC ILD Department. I was in shock and scared. I was back on oxygen 4 liters now.
By 2016, my sister still had 3 birds present in the home. I met with Dr. Patel in May 2016. She was shocked that a lot was not done for 5 years. No 6-minute walk tests. No hereditary testing. I explained how I was told it was my weight. In shock, she gave me the diagnosis of HP caused by indoor birds. She explained that I or the birds needed to go and that I would be headed for transplant. However, there was no fibrosis evident.
The news was devastating for me in one way. For my sister it was conflicting. Yes, conflicting. For financial reasons I remained in the home. The birds were moved to the garage of the home. I met once again with Dr. Patel in August 2016. there was nothing more she could do until the bird situation was rightfully taken care of.
I terminated my relationship with Klares thankfully and found a wonderful, caring pulmonologist, Dr. Mahmood at a local hospital with NYC training. I met him in November 2016 by March 2017 I was on 10-12 liters on exertion and 6 liters at rest. I was still working full time. Bringing 5 tanks a day to work. He begged my sister to remove her birds to no avail. He and Dr. Patel decided to try 60mg of Prednisone for 3 months.
Nothing changed. So, with trepidation he started me on 1000mg twice a day of Cellcept. It did not take long before I felt a major difference in my breathing. I went from 5 tanks a day to 3 to 2. Now where do we go? I learned so much from Living with Hypersensitive Pneumonitis. One take away was National Jewish Health. I decided to go to Mount Sinai National Jewish Health Respiratory Institute NYC in September 2017.
There I met Dr. Aditi Mathur. She was the first doctor to be more open with me. She said if she saw my CT and did not know my history she would ask "what's wrong there's nothing here." "Give them some Prednisone and they'll be fine." Obviously, I wasn't. She was forthright as Dr. Patel in stating I need to move away from the birds for at least 4 months to see if I can get better before anything can proceed. She stated that she believes I could see full recovery. I was in shock. As no one has ever told me full recovery.
I had no choice I had to move away. With some financial help and loans, I got a short-term lease in October 2017. I was alone with 2 cats at least. In February 2018, one morning I put the oximeter on my finger and it registered 97%!! I couldn't believe it. I must have put the oximeter back on at least 10 times. While walking it was 92-94%. I could walk on clouds. I now had a replacement pulmonologist (my wonderful doc moved away) he granted me permission to use oxygen as I felt necessary.
I did move back to my sister's home in February 2018 for other reasons. Home was steam cleaned. Bedding replaced. And dove rehomed. I purchased a good air purifier right next to the remaining bird. Yup remaining bird. But my breathing is good, and my oxygen saturations remain in the mid-90s. Every day is touch and go. I never know what will come next. So, I try to live in the moment. No more future thinking. Trying to appreciate what is now...for the moment.
I moved into my sister's home for what I thought would be a temporary stay of 1 to 2 years.
My sister and her husband lived with 4 dogs, 4 cats, 8 birds, 1 indoor rabbit, and many outdoor Peking ducks with hay everywhere. The rabbit also had hay.
I immediately developed bronchitis the first 3 months of my residency. I had no health insurance. My last ER visit brought to light the severity of my asthma. At least that's what we all thought. I was put on asthma medication. I've had asthma since I was a baby. In CT, it was relatively under control since puberty. With the asthma meds and a local clinic, I was able to control my breathing.
Until 2007, I was diagnosed with moderate obstructive sleep apnea due to weight issues. On my titration visit, my 02 levels fell into the 70s! Alarms and all. I was informed I would be contacted by my doctor about what was next.
Well that never happened, so I had to beg and paw until my CPAP nurse spoke on my behalf to my GP and then a concentrator was added to my CPAP routine, but no one told me why. I asked but got no answers.
I went along like a good patient. Then in November 2011 I got a new GP. I was about to have knee surgery. My weight was at the highest ever. At my pre-surgery checkup, GP noticed my 02 was 92% at rest. He decided to have his nurse take me for a walk especially up some stairs. I had complained of some shortness of breath and chest tightness. I assumed was attributed to my weight. My 02 at the top of the stairs was 82%. On returning walk back 84%. My doctor stated I was going on oxygen 24/7 at 2 liters until I saw a pulmonologist he referred me to within the practice. I was devastated. I refused to go to work with oxygen. I hid it from my coworkers. I carried a small tank and used it only in private.
I met Dr. Klares in December 2011. He did all the right tests. PFTs, CTs and blood work. He told me about pulmonary shunting. I had no idea what that was. He tried to explain in layman's terms. Told me I had a restrictive disease. Ok. His solution, lose weight. Told me my disease was most likely caused by my weight. He also informed me that I tested high for bird antigens and he knew my sister had birds in the house. I was so determined to get off the oxygen I would beg him at each visit. Finally, in January 2012, at rest my 02 was 95% so he allowed me to go off the oxygen. He did not test me on exertion. I admit I was relieved. My sister came to some of my appointments. He never once informed us the birds needed to be removed from the home.
For five years, he concentrated on my weight and I lost slowly. By 2016, I had lost 50lbs. However, once Spring came I was outside walking with my friend for exercise. I thought I would die. My chest was in pain and I could not continue. I had to keep stopping just to catch my breath.
I saw Klares in April 2016, told him what was happening. He decided we'd go for a walk. First without oxygen. Next with 4 liters oxygen. In his office He did not look at me. He said, "This is beyond your weight." (Duh really!!)
He referred me to Columbia Presbyterian in NYC ILD Department. I was in shock and scared. I was back on oxygen 4 liters now.
By 2016, my sister still had 3 birds present in the home. I met with Dr. Patel in May 2016. She was shocked that a lot was not done for 5 years. No 6-minute walk tests. No hereditary testing. I explained how I was told it was my weight. In shock, she gave me the diagnosis of HP caused by indoor birds. She explained that I or the birds needed to go and that I would be headed for transplant. However, there was no fibrosis evident.
The news was devastating for me in one way. For my sister it was conflicting. Yes, conflicting. For financial reasons I remained in the home. The birds were moved to the garage of the home. I met once again with Dr. Patel in August 2016. there was nothing more she could do until the bird situation was rightfully taken care of.
I terminated my relationship with Klares thankfully and found a wonderful, caring pulmonologist, Dr. Mahmood at a local hospital with NYC training. I met him in November 2016 by March 2017 I was on 10-12 liters on exertion and 6 liters at rest. I was still working full time. Bringing 5 tanks a day to work. He begged my sister to remove her birds to no avail. He and Dr. Patel decided to try 60mg of Prednisone for 3 months.
Nothing changed. So, with trepidation he started me on 1000mg twice a day of Cellcept. It did not take long before I felt a major difference in my breathing. I went from 5 tanks a day to 3 to 2. Now where do we go? I learned so much from Living with Hypersensitive Pneumonitis. One take away was National Jewish Health. I decided to go to Mount Sinai National Jewish Health Respiratory Institute NYC in September 2017.
There I met Dr. Aditi Mathur. She was the first doctor to be more open with me. She said if she saw my CT and did not know my history she would ask "what's wrong there's nothing here." "Give them some Prednisone and they'll be fine." Obviously, I wasn't. She was forthright as Dr. Patel in stating I need to move away from the birds for at least 4 months to see if I can get better before anything can proceed. She stated that she believes I could see full recovery. I was in shock. As no one has ever told me full recovery.
I had no choice I had to move away. With some financial help and loans, I got a short-term lease in October 2017. I was alone with 2 cats at least. In February 2018, one morning I put the oximeter on my finger and it registered 97%!! I couldn't believe it. I must have put the oximeter back on at least 10 times. While walking it was 92-94%. I could walk on clouds. I now had a replacement pulmonologist (my wonderful doc moved away) he granted me permission to use oxygen as I felt necessary.
I did move back to my sister's home in February 2018 for other reasons. Home was steam cleaned. Bedding replaced. And dove rehomed. I purchased a good air purifier right next to the remaining bird. Yup remaining bird. But my breathing is good, and my oxygen saturations remain in the mid-90s. Every day is touch and go. I never know what will come next. So, I try to live in the moment. No more future thinking. Trying to appreciate what is now...for the moment.