-
Renee replied to the topic New Zoom meeting – taking the bull by the horn in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 2 weeks ago
Yes, l would be interested in joining you
-
Renee replied to the topic travel while on ofev in the forum Ofev (Nintedanib) 5 months, 3 weeks ago
I just made a trip to the Grand Canyon. I was off of my Ofev for 10 days. According to my Doctor it was not a big deal to get off of it because l have no other underlying medical problems. She said if l were on any meds dealing with an infection, that would be a different story. Overall I am healthy, except for the PF. I am not downplaying this…[Read more]
-
Renee replied to the topic Is ipf genetic? in the forum Join the Discussion: Welcome to all PF/IPF Patients 8 months ago
Exactly Richard, it does matter. Our children and grandchildren are in danger of having this terrible disease. I don’t want my granddaughter and her offspring to be worried about it. My son has passed so that leaves my worries about our little girl and her future.
-
Renee replied to the topic Is ipf genetic? in the forum Join the Discussion: Welcome to all PF/IPF Patients 8 months, 1 week ago
My two brothers have died from IPF. I was diagnosed 2 years ago and my doctor keeps telling me that it isn’t a hereditary disease. It appears to me if all of these reporting about different family members testing positive for IPF, then is would be familiar.
-
Renee replied to the topic Inhaler use in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 4 months ago
Hi Liz,
- I am on Breo once a day but honestly can’t say if it’s helpful. I don’t have asthma so really not sure why I am on it, but doc wants me to stay with it.
-
Renee replied to the topic Coughing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 11 months ago
Hi Augusta,
I coughed for a year before finally getting the diagnosis of IPF. I started on Ofev in January of this year and my coughing has almost disappeared. I am convinced that the Ofev has helped. The side effects can be bad at times, but right now and l will take that over the constant hacking anyday😀. Hopefully you can get some relief.…[Read more] -
Renee posted a new activity comment 2 years, 1 month ago
Makes you wonder if they REALLY know whether its genetic or not. More and more people l talk to are saying they too have close family members. The main reason l want to know for sure is because if my granddaughter. Could she someday have a diagnosis of IPF???
Scares me witless. -
Renee replied to the topic New diagnosis age 61 in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 1 month ago
I too was just diagnosed with IPF. I have 2 siblings that had a definite diagnosis of IPF. My doctor says its nit genetic, but still makes me wonder about 3 of 6 developing this horrible disease. They both only lived less than 3 years after the diagnosis.
-
Renee posted a new activity comment 2 years, 2 months ago
Thanks Mark. This is not a club anyone wants to belong to, but glad to have any support offered.
-
Renee started the topic Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago
- Newbie here. Just
- started taking Ofev. So far l have been blessed and the side effects have been very few. A few headaches and fatigue. I have only been on it for 8 days, it still has time to hit with a vengeance 😜, but praying it wont.
-
Renee became a registered member 2 years, 2 months ago
i cant understand how it cant be genetics…… makes no sense that fam members would have same exact diagnosis…….. yes i do think others in fam could be at risk. You can model healthy lifestyle- not smoking. reg exercise healthy weight. good health habits.
I just had the chest biopsy and out of ICU in a half a day and discharged from…[Read more]