Ping Xu
Forum Replies Created
-
Hi, Jeff, thank you for sharing your experience with Ofev. I am so happy that you are not experiencing any side effects and hope that it continues this way. I was diagnosed at about the same time as you and we are both from Indiana! It is very nice to see someone on the forum that is close!
-
Charlene, first of all, I want to thank you for being a wonderful moderator of the forum. You are so kind and helpful to others. Of the ones that you listed here, my most fear is the financial implication of the disease. I am 44 years old so I don’t have Medicare. If I don’t work, I will lose insurance and no way to pay for the expenses. But this is not the what I fear most. I have two kids who are 8 and 14. I am afraid of leaving them. My mom passed away 3 years ago and I often feel really sad that I couldn’t be with her any more. The thought of leaving my children when they are at such a young age makes me want to cry. I try my best to exercise and take care of myself everyday so that I could stay with them longer.
-
Craig, Ken, Ben, and Linda,
Thank you so much for replying me and sharing your experiences. These have been really helpful. I am sorry that I have been slow in responding. The diagnosis of IPF really struck me as a huge shock and I feel bad that I have been trying not to avoid thinking about it.
I had already made my visit to Cleveland Clinic for the doctor’s visit and wanted to report back what I had experienced. Although the visit was only one hour and I had to drive 5 hours one way to get there, I would say I was glad that I made the visit. I uploaded the images of the HRCT to Cleveland Clinic and printed all my medical records from my local COE (I requested the medical records to be transferred to Cleveland Clinic and for whatever reason it was unsuccessful). The fellow doctor was nice. After talking with me, she brought all the records to an attending doctor. Both of them then came back to talk with me. The attending doctor told me that he did not agree with the IPF diagnosis that my local COE pulmonologist gave me. Considering my demographics (age 44 and female), he though my chance of having IPF is low and the HRCT did not show clearly the UIP pattern. They will be requesting the bronchoscopy samples from my local COE and discuss my records with their team. They will let me know after that but it could take a few weeks getting the samples. He thinks I need to do a surgical biopsy to be absolutely sure what the diagnosis is but that will be after the team discussion. I guess this is good but I am dreadful of the surgical biopsy. I will report here once I hear from the doctors at Cleveland Clinic.
-
Linda,
Thank you so much for sharing your experience. I am so happy to know that you have been stable for more than 5 years. I have heard from many posts that National Jewish is a wonderful center for lung fibrosis. Unfortunately it is too far away from where I live. Do you mind sharing how your silent reflux was diagnosed? My local pulmonologist asked me whether I had any acid reflux and I said no and I think that was how he ruled out GERD. There was no additional testing. I also had negative results for the blood test of autoimmune disease and hypersensitivity pneumonitis so those were ruled out. I had a positive result for UIP based on the envisia genomic machine learning classifier and that was the reason why the local pulmonologist diagnosed me with IPF. I am not sure how reliable the envisia classifier is, but it didn’t convince the Cleveland Clinic doctor. I hope I will receive a diagnosis that is not as depressing and hope to remain stable with the appropriate treatment.