r/pulmonaryfibrosis

Hi, I am looking for some reassurance or advice. For the last 10 years on and off I’ve had small to larger collapses. About 4 years ago I had surgery, and have mostly been okay since (maybe some minor collapses that have healed on their own)

About a month ago, I had one that was unignorable, but I read some research that waiting them out is possible rather than needing a tube at times. That said it has felt better over the past few weeks. Except when I wake up, there is a good amount of pain initially. As I go on throughout my day then by the evening it usually feels better, but sleeping resets the pain.

Anyone experienced anything like this? Am I being dumb not being seen? I really hate hospitals tbh so i am resistant. It has got a lot better since a month ago, but I am concerned.

my mom was discharged from hospital in Aug26 with Interstitial Pulmonology Lung disease. the hospital assigned her to Rheumatologist along with her current Pulmonologist (PCP assigned but haven’t seen before admitted). Hospital gave her Prednisone 20mg for discharged. then, she met Rheumatologist first, he gave her some blood test and give her Prednisone 10mg, so she can take 2 of 10mg (20mg) and wait for Pulmonologist tapers. she met Pulmonologist twice in following month but he didn’t said anything, but gave her more and more test. last visit, Pulmonologist increase her dosage to 30mg in 5 days and the following is 20mg. After completing the prednisone we prescribed refills should be requested from her rheumatologist! I feel like my mom gets ping pong… there aren’t proper treatment for the lung. At the CT, he said her has PF, but didn’t give any treatment plan or taper schedule, just gave some allergy medications and for more test. What should I do? I know that she can’t take prednisone long time and shouldnt stop immediately, but he not event gave her enough prednisone until see rheumatologist…

My mom was diagnosis with pulmonary fibrosis or ILD. I am so worry for her and don’t know how I can help. Her oxygen at home sometimes below 88 and back to 90-91, her heart increases to 120, short of breath. she is admitted to hospital twice in a month. after discharged, she doesn’t qualify for home oxygen. however, sometimes it drops. but idk at the doctor’s office to do test, she is 90 and then not qualify. I really don’t know what to do now. T.T

Hello everyone,

I live in Istanbul and I’m 52. I was diagnosed with Scl-70 positive systemic sclerosis and interstitial lung disease. The illness started with lung involvement about 12 years ago and progressed that way.

I went through most of the immunosuppressive and disease-modifying treatments commonly used for this condition: Myfortic, tacrolimus, Ofev, corticosteroids, rituximab, IVIG, azathioprine, and others. The first six years went relatively well. The next six years, which overlapped with the pandemic, were different. Breathing problems increased, I got sick three or four times every winter, and I started using a portable oxygen device. By 2025–2026 I needed oxygen support 24 hours a day.

In April 2026 the rheumatology team at Istanbul Cerrahpaşa re-evaluated me with a full work-up. Medication had kept the disease stable, but it was no longer improving. A medical board discussed further options. Among them, I decided to look into lung transplant. I had previously kept that option at a distance, because it is not often discussed as a solution for scleroderma.

I researched online, watched videos, spoke with people who had been transplanted, and contacted centers in Turkey and abroad. My main problem was time. My lung disease had advanced, and I had been told I needed a transplant within two to three months. Organ donation rates in Turkey are relatively low, and awareness of lung transplant is limited. The teams and centers are strong, but the donor shortage means long waiting lists, and a longer-than-average wait was likely.

After some quick research I applied to Cleveland Clinic Abu Dhabi. Online consultations followed, my reports were reviewed, and the process moved quickly. I arrived on June 24 and was listed within about 20 days. An organ was found on September 4, and the transplant was performed.

After 15 days in hospital we moved into a local residence. I’m now nearing the end of my first month. There have been a few minor issues, but overall things are going well—my vital signs, walking speed, and lung capacity are improving day by day. I still have a lot of work ahead, but every bit of progress keeps me motivated and seems to help recovery.

I wanted to share this as a story of a real beginning, and to mention Cleveland Clinic Abu Dhabi as a serious option: experienced doctors, strong service, and a state-supported transplant program. For me, the light came from the East. I hope everyone waiting for an organ gets a second chance as soon as possible.