John Penn
Forum Replies Created
-
In reading your post though I was so happy to hear that your physician said to pray for your health and thought I would share some of my journey with IPF with you. I was diagnosed in October of 2017 and have been on Esbriet since. I do have breathing challenges but my IPF has not progressed much at all since initial diagnosis. What did occur this past year though was I received a diagnosis of small cell lung cancer with a very large mass in my right lung. For the remainder of 2023 I was getting chemo treatments along with radiation that were completed on December 3rd. This is where I believe prayer came into play. have had CT scans and MRI and the mass cannot be detected at all at this point. With all the chemo and radiation there was fear that my IPF may kick into high gear. This has not been the case thank the lord. There has been many hours of taking to god, committing myself to the lord and learning that he does take care of those that believe and honestly make him the center of their life. I cannot predict the future but I know that it was thought I might not make it until Christmas and here I am getting ready to celebrate the new year feeling better than I have in a long time. The power of prayer is real. Your doctor is spot on. Give it to god. He really does care. I pray for all of you on here with this awful disease. You don’t have to go it alone. God is waiting to hear from you.
Good bless you all..
-
I have nasal congestion at night. I find nasal strips can help. I also have a bed that I can elevate the head to assist with sinus drain. Not a pretty discussion but this is what we deal with.
-
I will use a mask and it helps tremendously. I walk my dog at times when it is in the teens and 20s and having mouth and nose covered really does help.
-
I was diagnosed in October of 2017 and began takings esbriet in November. I have not had any significant decrease in my lung function and continue to be active. I do have to deal with fatigue and coughing but overall been manageable. Last PFT there was actually a slight improvement over the previous test. I too was. Dry concerned when the doctor told me the 3-5 life expectancy. I am 5 years removed and feel very fortunate and and hopeful for those like yourself.
-
I was diagnosed in November of 2017. My most recent CT scan indicated little to no changes since the initial diagnosis. What I have noticed over the past year is a worsening cough, particularly in the morning, and when taking a steamy shower. Mornings cough spells can last sometimes an hour or more. Once I get over them I am ok thought the coughing itself will take its toll on my energy. So it is confusing when thinking about is my disease worsening or not. I am still fairly active though not at the same level prior to being diagnosed. I walk 1-2 miles 4-5 times a week though I need to keep my pace to moderate. I know everyone here wonders about the progression of this disease we all have. I love reading others journey through this.
-
I have been on Esbriet for 4 years. I have maybe 2-3 drinks a month…sometimes a beer, sometimes a rum and coke. Thus far all of my liver panels have been normal. Like most things individuals metabolize things differently so my experience may not be the same as others. Be safe and wishing all of you the best
-
I have been on Esbriet for over 3 years. First 2years on the 267 dosage 9 per day. Last year switched to 801 and have not had any issues. Yes, I do need to watch the sun exposure and experience some digestive issues but all are minor. Hope you can get through this.
-
@christie-patient
I have been on Esbriet for 3 1/2 years and notice my skin is much more sensitive to sun exposure and the elasticity appears to be much worse. Seem to get many little bumps and small rashes. I have had a Basel carcinoma removed a few years ago and am seeing a dermatologist now.
-
Been taking Esbriet since November 2017. I struggle with the fatigue and have to take medication for the heart burn that can get severe. I find that very cold air is tough on my breathing so I try to stay in the house when it is below 30. I have no other side effect and will be having my liver panel in February. Due to Covid I have not had a liver panel I over 6 months but they had all been normal up to that point. No indication from doctor to change or stop any medications.
-
I would also agree with trying the reduced dosage to see if that helps before just stopping. I am so fortunate that after 3 years on Esbriet I have had no real side effects. Yes I get fatigue but other than that all is good…,best of luck..
-
I was diagnosed in October of 2017. I continued to work until February of 2020 at age 65. Though I am still fairly active stamina was getting worse as was my cough having to use supplemental oxygen occasionally. Without knowing if I would face a rapid decline or any exacerbation my decision to retire was based on spending quality time with my wife and family and reducing any work induced stress.