Debra Lowder
Forum Replies Created
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I have been taking Esbriet for 3 years now and what helps me the most is making sure I drink plenty of water and eating at least 10 mg. Of protein with each dose. When I first started taking it, I would get bad headaches and nausea. The worst side effects lasted about 4 months and then subsided. I hardly notice any now, and it was well worth sticking to the dosages. My IPF has progressed very slowly and now 3 and ahalf years later, I only need oxygen at night when I sleep. I have kept my weight down and exercise routinely. It is well worth struggling through the side effects because it gets better. I hope this has helped and hang in there.
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Dear Cecil, When I began taking Esbriet 2 years ago, I was assigned a nurse who gave great advice about diet and managing side effects. Genentech assigned the nurse and she was a lifesaver. The side effects subsided after about 4 months and I am managing very well now. I feel good after being diagnosed with IPF three years ago. Still not on oxygen and I can walk 2 miles, four times a week. I suggest giving Esbriet another try, and ask for a support nurse to help you with side effects.
Debra Lowder
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Trying to keep that healthy balance between acceptance and being thankful for “good days “, is a challenge. Each step (like needing oxygen for the first time), brings a new level of acceptance that things will get worse. All families are different, but I think mine is typical in that some members are more accepting than others. It’s frustrating when some family members are still in denial and have not accepted the inevitable. My challenge is with my husband of 11 years. I am a “young ” 68 year old, and I’m dealing with intimate issues in my marriage. It’s hard to tell when my spouse is disinterested in intimate relations because of his age, and when it’s related to my IPF. He treats me like a delicate flower and doesn’t touch me like or as often as he used to. I know I am blessed that I still have a spouse, but I would love for things to remain the same for as long as possible. Of course he always says “nothing has changed ” but I feel that it has.
These are just some of the mental health challenges that everyone with a terminal illness must face, but as my uncle said recently, we’re all terminal.
There’s one thing that we all seem to agree on, and that’s faith. I’m extremely blessed in that I have walked with the Lord all of my life, and answered His calling when I entered the teaching profession. I got to enjoy an amazing career before I got sick. I think the worst thing at this stage, would be to have regrets about one’s life and choices. Maybe younger people might read this and decide to make a life changing decision while they still can.
I appreciate this forum and the amazing job that you do, Charlene. We are truly thankful for all the hard work you do keeping this site meaningful and relevant. God bless you in your journey, and keep up the good work. You are definitely answering His calling.
Sincerely, Debra.
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In response to Laila: I too am in the beginning of accepting this disease (diagnosed April 2020), and my best advice is to exercise. I walk 2 miles a day at a health center where the environment is temperature controlled. I feel good (except for fatigue in the afternoons). I am 68, and still healthy enough to travel. I guess this is as good as it gets for now, but makes me thankful for small blessings. Check into the 2 medications that slow the progress of this disease, and do things that make you happy. That’s the best advice I have. Take care of yourself. Debra
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I had the Pfizer in March and tested positive for COVID 2 days ago. I was diagnosed with IPF in March 2020. I ran a fever for 3 days, had a bad headache and cough, with body aches. The worst seems to be over here at day 5. I stayed out of the hospital and do not need oxygen. I’m very thankful for the vaccine and recommend it for everyone.
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Wendy, I’m taking Gabapentin for pain and as a muscle relaxer. I only take it when I’m going to sleep (at night), so the side effects don’t bother me. What are you taking it for? Debra
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Wendy, I’m taking Gabapentin for pain and as a muscle relaxer. I only take it when I’m going to sleep (at night), so the side effects don’t bother me. What are you taking it for?
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BRAVO. Well said, Darlene. I couldn’t have expressed it better myself.
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50 MG. Per day.
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When I had COVID last fall, my pulmonary doctor told me to take zinc. I didn’t know why, but I started taking it and I haven’t stopped. I’m holding my own and feel pretty good for this being my third year living with IPF. Not sure if it’s due to zinc, but it sure hasn’t hurt any. Debra Lowder
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Dear Laila: I was prescribed Esbriet 6 months after my diagnosis, and I have had good results on CT scans – very little progress with the disease. The side effects were not too bad and they lasted for about 3 months. They are now manageable, and my diet change was a huge factor. The best advice for managing the side effects: Eat well and get enough protein. Cut out junk and sugar. Ask your doctor to consider the antifibrotic that’s right for you, and if you’re not happy, change doctors. Consider making an appointment with a medical university near you. I now go to Duke University once a year just to keep up with the latest treatments. Email me anytime if you have more questions, or just to chat. Battling this alone is tough, and it helps to talk to someone going through the same thing. Best wishes. Debra