Pulmonary fibrosis (PF) is a rare disease few have heard of. Joyce Lee, MD, presenting at the PFF Summit 2015: From Bench to Bedside, provides insightful information about PF and how it affects patients’ lives.
Very informative. I was diagnosed with pul. Fib. in 1996. I am female had a sudden calapse at age 49. was taken to hospital for observation,woke up after 30 days on a ventilator. They did biopsies of everything to try to figure it out all they found was a slight thickening in the spaces in the capillaries which slows transfer of oxagen to blood. The rest of my lungs were inflamed but recovered. I can take deep easy breaths and yell at people. But all physical activity is dictated by my breathing. If I slow down I am fine. 5 months after release from hospital and a lot of pt I went back to work full time at the post office 45 hrs a week delivering mail. As I got older it got harder but I kept going and retired at 67. I am now 75, live in my own home, do yard work, the only thing I need help with is lifting things over 35 lbs. (chicken feed comes in 50 lb bags) If no help around I put it into two pails. For my 60 birthday I took a tour of China and Tibet. I took a cane to wave at guides who walked too fast. The other 9 people figured out quickly my legs were fine but then they found they liked walking slower and taking photos. When we got to Tibet, all of them had altitude breathing problems. When we went to the Dali Lama's Palace the Parking lot is at 16,000 feet and then climb 450 big stone steps to the entrance and then tour lower 3 floors of palace. We estimated a total of 16,500'. I walked and climbed at my normal slow steady pace, with no difficulty. When I told my Pulmonolgist she checked and the available oxagen at that height is 40% of sea level. I felt a lot better about being slow. When I travel I always take a cane, I need more time to get on an airplane etc. People can be rude when you use handicapped parking and you look just fine. I try to schedule only one activity away from home a day, now that I am retired and choose most of my schedule. I know this was long but I hope this helps someone who is struggling. When I woke up I could not even hold a spoon to feed myself. Do not move so fast that you start gasping then you have a longer recovery. I keep chairs all over my yard if I need to sit and rest I stop and rest before it gets bad. Also I need to drink a lot of water. Good luck to you all.
All very useful to me. I was diagnosed with PF 6 or 7 years ago. I am 75 now. Just about to use oxygen for the first time! The decease has worsen in the last year. Thx
Very useful. Thank you for taking the time. Background is very reassuring to people with this problem as the cause is not known and there is no known cure.
I met a patient with this.... Presently suffering alot, not having funds to care for herself... She has to buy a portable O2 tank to attend clinic.... Her biggest worry is to get a tank and hoping there is enough o2 to take her from home to clinic and wait for the doctor. Of course if her o2 can't make it she will have to leave clinic. I am most ashamed that this is my country's health care and as a nurse I am even most ashamed. We need a cure.... These patients suffer so much..
I appreciate how honest she was toward the end about not being the most qualified for the feel function & survive part. She did excellent with everything else
I heard of PF 30yrs ago when my dad was given 6months without a transplant. He received his new lung, and lived 17yrs after lung transplant. Now I am 62 yo male, and was diagnosed with PF this week.
Hi Chelsi, We are here to help. Please contact our Patient Communication Center at 844-825-5733 or pcc@pulmonaryfibrosis.org to learn more about the disease, treatment options, and support services available to you, your family, and grandmother.
Very good short film on IPF need more people to be aware of this unfair disease I have told over 100 people what I have and they still sometimes ask what have you got again. Just started Oxygen after about 3 years after discovered. which took over 2 years to discover. Lucky enough in a couple of months I start a physio program to get in best possible shape in hope of a Transplant. I am very grateful to even have this chance to live.
Hi Wally and Charlene, We hope you are doing well and we agree that more people need to know about this disease. If you'd like to learn more about treatment options, lung transplantation, or how to raise awareness, please contact our Patient Communication Center at 844.825.5733 or pcc@pulmonaryfibrosis.org.
i have this and i'm only in my 40s when I walk and talk *carrying nothing* i feel like i'm drowning underwater. :( But Jesus Is my hope. :) Jesus/ Yeshua :)
Hello, We're so sorry to hear of the difficulties you've experienced with this disease. We would highly encourage you to reach out to our Patient Communication Center to learn more about the disease and resources that may be available to you. Please contact 844.825.5733 or pcc@pulmonaryfibrosis.org.
I lost my dad to IPF, it's a heartbreaking experience watching somebody I love die each and every day from this disease. R.I.P dad I love you and I miss you too the moon and back. 😪
Hello, Doctor. I am a 60 year old woman, very health conscious, of normal weight, and have never smoked. I had a CT scan, actually for non- lung related issues. ( It was of the urinary tract and turned out to be non problematic.) But surprisingly, the results revealed that I have " multiple irregular streaky linear densities, fibrosis, atelectasis, and subpleural reticulation. ( In the bibasilar and basilar region ) I don't have a cough, am rather active, but noticed a little loss of stamina. As a young woman I worked with parakeets, cockatoos and chickens, I also had 2 rather severe bouts of pneumonia - one as a child, the other in my 30s. My oximeter is normal... I was referred to a pulmonologist, but in the meantime, wonder what is going on! Everything about fibrosis on the Internet is troubling - it mentions the median life expectancy, etc. Should I be worried? Thank you for a thorough and educational video.
Hi Allen, We are here to help. If you'd like to learn more about the disease and support services available to you and your family, please contact our Patient Communication Center at 844-825-5733 or pcc@pulmonaryfibrosis.org.
My mother had Pulmonary Fibrosis and her health declined rapidly with severe weight loss and coughing during her last few months. She died on 5 April 2019 age 75 two days after getting Pneumonia. Our family miss her so much.
Hi Mersey, We are so sorry to hear of your mother's passing. Our thoughts are with you and your family during this difficult time. If you are interested in support services available to you and your family, please reach out to our Patient Communication Center at 844-825-5733 or pcc@pulmonaryfibrosis.org.
Doctor Lee, Thank you for doing and sharing your presentation - I found it very informative. I am late to the comment party as you posted this video seven(7) years ago. If anyone is still around - question, please. I am reserving my questions to my specialist for really tough ones. Is Interstitial Lung Disease(ILD) the overarching respiratory disease, then under ILD are the known and Idiopathic Pulmonary Fibrosis (IPF) (unknown) causes of Pulmonary Fibrosis(PF) -?yes? similar to Alzheimer’s and dementia. e.g. Dementia contains Alzheimer's disease, Vascular, Lewy body, Frontotemporal, Mixed, Parkinson's disease….. I am confused if I have Idiopathic Pulmonary fibrosis (IPF) or ‘just’😊😊 ILD. In mid-November, I was diagnosed with ILD resulting in PF caused by cancer protocol R-CHOP (with MTX) and then afterward COVID. Reading some of the social media sites (yes - I shouldn’t) people seem to be using ILD and IPF interchangeably. Thoughts and thank you. Tim Dolan
Nell I hear you. I feel so lost too. Some nights I can't quit crying. I just don't want to leave my children. I hold it together all day but when everyone is in bed and my door is closed if I can't hold it back I don't. I don't feel like this everyday but even 2 or 3 times a week is too much. I don't just feel blue I feel black. I don't understand why I have this. Are you still having a tough time of it?
@suraj tamang THANK-YOU for taking the time to reach out. So much has happened since I first wrote! I was misdiagnosed and don't have PF. But it's not really an improvement, trust me. Since then I've been rehospitalized and they found a "shadow" on my chest X-Ray. After numerous consults, diagnostics, painful procedures, on and on, they found out my pulmonary artery is very enlarged but they don't know why, aka idiopathic. So I have Pulmonary Hypertension with Heart Failure. Only my BP runs quite low versus high. I also have a slow heart rate called Bradycardia. I also worked as an RN for many years caring for sick patients in hospitals until I became too ill to work anymore. Then 11 years after leaving nursing (having dedicated myself to bedside care for 30+ years), I turned up with a positive TB test. Having never had anything but negative annual TB tests my entire career I was shocked! The test was repeated bc the Dr believed it was a false positive, but it turned out positive a 2nd time as well. However, the form I have is latent TB bc my body has probably harbored the bacterium for all these years without it activating. The problem is that I do have a couple mass like areas in my lungs -- one on each side. At times I can feel them and they're quite painful. I have to be on TB Rx for an entire year of treatment before they consider it a success. These pills are serious medications that can cause liver & kidney failure so they are not for the light hearted! The patient is continually monitored by Specialists. Sorry this became so long! I didn't intend on it, lol! On another note I miss taking care of others and nursing at the bedside! Well everything but Covid that is.
I have this and i am 57yrs Doc. Said i got this from my past work( i work as caregver 14yrs eledrly she passed away 94yr.. i never got sick 14yr never check up.. But when i got my new work..(this is it.. i really have shortness of breath.. God Healed Me...AMEN!
Hi Ellen, Thank you for reaching out. We are so sorry to hear of the difficulties you've faced. Please contact our PFF Help Center at 844.TalkPFF (844.825.5733) or help@pulmonaryfibrosis.org for information about pulmonary fibrosis and to learn more about support services. Please note that we cannot provide medical advice.
Hi Cheryl, We are here to help. Please contact our Patient Communication Center at 844-825-5733 or pcc@pulmonaryfibrosis.org to learn more about the disease, treatment options, and support services available to you and your loved ones.
Hello Dr. If you have grey matter ground glass opacities but no permanent scarring. Can this grey matter ground glass opacities clear up? Is this grey matter ground glass opacities inflammation?? If so what drugs can help maybe clear this inflammation up? Prednisone? Gabapentin? I am on cell cept to stop the progression of this grey matter ground glass opacities. But I believe if given a heavy anti inflammatory drug this could clear up?? Please advise. Thank you Mark
Hello, My sincere apologies for the late response to your question. For more information regarding causes and treatment for pulmonary fibrosis, please contact the PFF Help Center at help@pulmonaryfibrosis.org or call (844) 825-5733.
Fibrosis is a Gas Exchange disease as are all ILDs. Diffusion does not occur in process of Gas Exchange instead the pulmonary surfactants act as ultra microscopic valves with nanobubbles of air entering through them on inspiration and on expired cycle nanobubble of air with increased CO2 + H2O. Some of this expiration foams foamed CO2/H2O which acts as an immunity type shield. DLCO should always be called TlCO test as it is measuring transfer of CO across the alveoli not diffusion
What is non specific fibrosis left lower lungs because when I have a x Ray my result is subsegmental atelectasis vs non specific fibrosis left lower lungs what does it means can u help me understand it thank u..
Hi Roy, Thank you for your question. We encourage you to contact our Patient Communication Center at 844.825.5733 or pcc@pulmonaryfibrosis.org for more information about pulmonary fibrosis. Please note that we cannot provide medical advice.
the numbers matter a lot but in these cruel diseases that I also don't take into account that you can have good saturation and you, I will die because of the disease itself and the blood gases DELCO, gasometers
I have bpoc pulmonary emphysema and pleural fibrosis plus ankylosing spondylitis, saturation is vital for a person, but in these cruel and deadly diseases
Hi Mohammad. We encourage you to contact our PFF Help Center at 844.TalkPFF (844.825.5733) or help@pulmonaryfibrosis.org for information about pulmonary fibrosis. Please note that we cannot provide medical advice.
I was diagnosed with few linear fibrotic strands in medial segment of right middle lobe and posterior segment of right lower lobe five months back and my oxygen level is 98% and my PFT was within normal limits and I was also diagnosed with bronchial asthma and since then I have been having stinging chest pain and difficult breathing. Please suggest any further diagnostic tests which I should undergo? I am just 32.
Hi Pixel, We're here to help. Please contact our Patient Communication Center at 844.825.5733 or pcc@pulmonaryfibrosis.org to learn more about the disease and resources that may be available to you.
I was diagnosed after getting pneumonia. I cant walk 10 feet wout gasping my 02 drops to 70s very quickly. When i was diagnosed my doctor also mentioned lung transplant. Only 20 percent lung capacity left. Think ill be dead in 6 months
Iam having post covid lung fibrosis , my oxygen level is below 94..i have pain in left lung.any cure from this desease. Am taking prefibridone as a medicine. Any other treatment is available
Hi Ayisha, Thank you for reaching out. We are so sorry to hear of the difficulties you've faced. Please contact our PFF Help Center at 844.TalkPFF (844.825.5733) or help@pulmonaryfibrosis.org for information about pulmonary fibrosis and to learn more about support services. Please note that we cannot provide medical advice.
At this point i'm still very shocked with the negative result I got after suffering from pulmonary fibrosis for so long. Thanks once again Dr Ogudugu on RU-vid for your medication
Depends a lot on the type and if it continuing to get worse. Mine was caused by a one time event and has stayed the same for over 25 yrs. However if I get pneumonia or other illness that stresses the lungs I will be unlikely to survive. I see a lung Dr regularly who checks that nothing has changed.
