Janet Haynes
Forum Replies Created
-
Welcome Pam to the forum. My husband was diagnosed 4 years ago and we read with dismay the 3-5 life span. He has been taking Esbriet since being diagnosed, sees his pulmonologist every 6 months and is in great shape – no oxygen. I too wish that the outdated information would be remove especially since there is now medication that works to slow the progression of the disease. Ignore that info – we are!!!
-
Thank you, Mark. We feel very blessed that he is still in relatively good health.
-
My husband was diagnosed with IPF in September 2016, was determined by his pulmonologist in November that he was a candidate for Esbriet, and started Esbriet in January 2017. He’s been taking it ever since. He has experienced some (minor) sleep issues and thinks the side effects may be because of medication that he is taking for IPF and heart (had a heart attach in 2012). He does have sleep apnea and this may be a factor. He’s not had any side-effects but did experienced a severe rash from sun exposure 2 years ago which necessitated his stopping Esbriet and restarting from the beginning, which was a real bummer. He sees his pulmonologist quarterly which includes breathing tests, has monthly blood draws specifically to check his kidney functions, and the results from each shows that he is stable. His stamina is beginning to lessen but he is still able to do yard work and many of the things he has done in the past. From his pulmonologist, there is no “end-date” for his being on Esbriet. We’re grateful for the stability of his health.