My name is Virginia. I am one of those that didn’t opt for lung transplant. I was diagnosed last year with CHP (Chronic Hypersensitivity Pneumonitis) after I underwent a lung biopsy. I went downhill after lung biopsy. My pulmonologist said it was a rare case.  I am an RN. I went back to work 6 months after diagnosis and lasted for 1 year.  Work… Read more

I am one of those that didn’t opt for lung transplant. I was diagnosed last year with CHP( Chronic Hypersensitivity Pneumonitis) after I underwent a lung biopsy. I went downhill after lung biopsy. I am an RN. I went back to work 6 months after diagnosis and lasted for 1 year.  Work rejuvenated me but my oxygen need has gone up to 6-7 liters.  I… Read more

this is a follow up of what I sent to you before.  I am now on disability due to a worsening of  my condition.  I stopped working since end of July and now my life is so difficult to deal with.  I sleep late and wake up late. When I walk even with oxygen, I become so short of breath.  I’m still taking Ofev but the symptoms of this disease… Read more

Rest is not a solution.  People think that I can enjoy life by staying at home and not working.  When I was working as a nurse, I’m able to cope with the side effects of coughing and shortness of breath until I became stressed from taking care of patients.  I felt I was deserving them.  I was so focused with shortness of breath and cough that I… Read more

My condition has gotten worse. I stopped working because of severe shortness of breathing can’t even go to groceries unless they have a cart scooter.  I have to wear oxygen around the clock now. I can’t even walk my dogs anymore. I’m imprisoned in my own home because walking inside my home causes me to miserably short of breath.   This condition… Read more

I’m sorry to share my dismay, I just need to vent my feelings in this forum.

there are good and bad days mostly bad days at work and home.  Ofev delays the progression of the fibrosis but my shortness of breath is unbearable.  I work as a night cardiac nurse.  I have to do my share.  I have to help my patients as well my co nurses’ patients but walking around the unit wears me out.  I started coughing hard until… Read more

Same with me too. I find comfort with atleast 2 pillows at my back or lying on my left side with one pillow by my left neck.  Sleep is ok. I have to cough out secretions only throat and chest.  Then runny nose starts oozing out. When these secretions are out my breathing is better.  I have CHP as well.  Miserable with it.  I’m still working… Read more

Hello, Charlene, this topic is so close to my heart.  I’m a cardiac nurse. I am a nurse for 28 years.  Prior to that I was a pharmaceutical sales rep from Manila and here in the USA. I decided to shift to nursing because it was a wonderful career that I can perform until retirement.  In 2018, I was diagnosed with ILD.  Only last year, after a… Read more

I was prescribed ofev but my insurance denied it. I am Trying the assistance program.  If they require a copay, I don’t think I can afford it.  I was referred to Humana.  I have a chronic fibrotic hypersensitivity pneumonitis and went more short of breath after this disease was found in a lung biopsy.  I’m still working for the medical… Read more

I was prescribed ofev but my insurance denied it. I. Trying the assistance program.  If they require a copay, I don’t think I can afford it.  I was referred to Humana.  I have a chronic fibrotic hypersensitivity pneumonitis and went more short of breath after this disease was found in a lung biopsy.  I’m still working for the medical… Read more

Check with amazon.  They may have it.

My mother had partial lobectomy.  She and my father 6 packs a day smoker.  She passed away just at 60 yo. I have so much guilt not able to understand her medical condition.  At times, I felt really frustrated having to take care of her.  I was so stressed because my father had lung cancer and died at age 65 yo just 3 months before my mother… Read more

I was diagnosed with hypersensitivity pneumonitis and after the lung biopsy, my mucus production increased, wheezing started, post nasal drip, shortness of breath and desaturation.   I was started with oxygen after lung biopsy.  Prior to that my occasional coughing was controlled by Neurontin or Gabapentin.  I’m so miserable because with… Read more

I am on disability now after a lung biopsy last January to know whether it was PF vs Hypersensitivity Pneumonitis.  The biopsy result was Hypersensitivity Pneumonitis.  I had a worst post op agony after my surgical biopsy.  I have to use oxygen 24/7 ( I never did before). Coughing and desaturation are futile.  I felt I would die.  I lost… Read more

Before the pandemic, I was chastised by Catholic churchgoers when I cough even I wear a mask.  My pulmonologist at a hospital where I work as an RN recommended Neurontin.  This medication really help my coughing up to this moment.  I’m so happy with lesser coughing.  Ask your doctor about Neurontin, this medication will really help you.

The last time I spoke with my pulmonologist via zoom, we are trying to rule out IPF vs Hypersensitivity Pneumonitis.  On top of being diagnosed with interstitial lung disease , I suffer from allergies, asthma, GERD, and post nasal drip.  The symptoms of IPF are all present with the symptoms I have.  I’m so depressed with this condition… Read more

If Metformin can reverse the progression of ILD, then it is good need for me.  I wish you can  update about the latest studies on this.  This is a good news for a diabetic like me and  afflicted with ILD.

Gabapentin works for me.  I’m able to be functional at work and at home.  I take 3 cap 300 mg TID.  Before then, I cough excessively at work and has difficulty sleeping at night.

gabapentin works for me.  I have been coughing for more than a year until my pulmonologist told me that I can take Neurontin or Gabapentin.  My life improved.  Constant coughing stressed me out.  I take 300 mg three times a day.  I have a decent sleep.  Neurontin helps with sleep.  One side effect is sleepiness.  I took it before during the… Read more