I live near Pittsburgh, Pa..we get the heat and humidity..very difficult breathing with this also. I lived in Las Vegas in my younger days and 116 degrees is very hot 🔥 too. I stay inside when hot or poor air quality.

Alan I too have been getting tested at UPMC. I started last year. Just found out at my May testing that my antibodies are at 74. Which means that only 26 percent of the lungs would be good for me. Do you know how many antibodies you have. It’s the HLA luminex testing they do. I might get listed or may wait many tears for a donor.  Will find out… Read more

The trial was stopped two weeks ago. I was the first to join at UPMC I was actually getting the drug at the end of my year. Unfortunately 600 people got the same phone call. Due to efficiency. I have declined in the year since I started it and am now using oxygen. It didn’t help me but hoping something else comes along. We had 60 in our center enrolled.

Hi Nina

Mine was found in 2016 after a bout of pneumonia. Was asymptomatic until this past year..I was a swimmer. Can’t swim now. Wearing  oxygen at bedtime for the past month..I am involved in a clinical trial at the University of Pittsburgh. I just started getting the real medication which is an IV every month. Hoping it slows it down, I… Read more

Hi Chati.

I was diagnosed in 2016. Didn’t have any decrease in PFT’s and CAT scan until 12/19.. I also am 67. My pulmonologist will not order the 2 approved drugs because he says they will make me sicker than I am. I still am very active but definitely notice my pulse ox  goes low with any increased exertion. I am presently in a pulmonary… Read more

I’ve had IPF since 2016, don’t take ofev or Esbriet. Just was ordered Oxygen for exercise. Went through the transplant work up 2 weeks ago..getting a stent tomorrow. Hoping for good news. I definitely want a second chance.

Hi everyone, I too have many good days but seem to think more of the bad days, I have not had may bad days because I am just starting to feel the effects slightly. Bad days for me will be when I have to use oxygen continuously. I have so many great friends that encourage me to be strong, but many  evenings when I’m alone I let my mind think… Read more

Hi Everyone

I too have IPF and at 67 am about to start the testing for a lung transplant at the University of Pittsburgh, I was diagnosed in April of 2021 and at this time am asymptomatic. I am very nervous about the disease itself. I am a retired nurse and took care of transplant  patients. I am  not sure this is the course I want to go… Read more

Hello Jeff

Thanks for responding. I have never asked my pulmonologist,  but I do notice it with two other members of my support group. It really is bothersome.

Be well,

Cheryl in Pittsburgh,  Pa.

I don’t have nasal  congestion but I do have to clear my throat lots if times during the day. Very annoying. Often get mucous from the back of my throat. I too have had reflux since the age of 29 and also IBS, I definitely have read there is a link to it causing IPF. Does anyone else have the throat problem?

I have to clear my throat alot. This started several years ago. I was dx last June with IPF, but looking back on my CAT scan from 2016 I had interstitial lung disease. Never saw a physician about it. The throat clearing has definitely increased often tom6es with phelgm. Worse after I get up in the morning. Thought mine was definitely related… Read more

Hello Bill interested in where you bought both of your spirometers?

Hello everyone. I love these forums because they are so informative. I have a research pulmonologist at the University of Pittsburgh. He does not want me to take one of the meds because he said “you are not sick now and these will make you sick”. I have had IPF since 2016 and still very active. No cough or SOB. I know this can change at any… Read more

Hello to the group I enjoy reading everybody’s experience with this unfortunate disease. I was diagnosed June 2020 by a CAT scan following up on  a  nodule, not symptomatic at this time. Nodule is gone fortunately. But I started having scans in 2016 yearly and see that I have had it since then. I was swimming 3 x a week a mile prior to Covid for… Read more

So sorry to hear about your dear mother! My thoughts and prayers are with you and your family. I too have this awful disease. I just turned 66. Hope I am still here at 71.