Edward Grant
Forum Replies Created
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I lost my husband, my soulmate last week to a combination of heart failure and PF. I am posting to actually let those with this horrible disease know that the lifespan is variable and not written in stone. My husband was diagnosed over 20 years ago when a heart attack revealed the crackling in his lungs. We had an amazing life and shared many adventures together. I can’t say the end wasn’t hard, but we did finally let hospice (frightened as we were of that very word) come in to help. So keep fighting and God Bless y’all.
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I have experienced dizziness in the morning but thought it was from getting up too fast (well not too fast lol)! I use a nebulizer usually twice a day and find it helps get the mucus up. However the medicine makes me extremely shaky in not only my hands but my stomach also. My nebulizer and oxygen attaches to a Volara machine by hillrom which expands the lungs and really helps. I also have additional conditions which makes it more difficult. Today is one of those bad coughing days which seems to come out of nowhere. I find there is a lot about this disease I don’t understand and like y’all don’t quite know how to deal with.
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Thank you for your input. We appreciate the help. Ed’s pulmonologist just put him on the 100mg instead of the 150mg. His main issue from the OFEV is the stomach pain. He is on 2ml oxygen, takes pentoprazole for GERD and 5mg prednisone. We have also found that taking small bites when eating ,careful swallowing, and no talking helps a little with the coughing at meals. My husband says that works because I do all the talking anyway. Thank you again.
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My husband just switched from Esbriet to OFEV. He had the stomach pain with the Esbriet and now experiencing it with OFEV. Rachel mentioned something about taking the Bio-K + probiotic. Right now Ed is taking another nondairy probiotic drink. Our questions are how much should he take, should he take it everyday and should he take it with the OFEV? Also does anyone know of a good way to eat, drink water or take pills without the terrible coughing starting? Thanks for your help and input. We have learned so much about this disease just by being a part of this support group.