GratefulDeb
Forum Replies Created
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I hear you!!! I have gained at least 55 lbs over the past 3 years. It sucks, I know. I try to get some exercise but I run out of breath quickly and I am on oxygen 24/7. I attribute it to Prednisone….which I am now tapering off as I am about to start OFEV (nervous about that). Prednisone really bloats me up and my appetite is huge on Prednisone.
You mentioned you are on OFEV. I am about to start this medication myself and am hoping it might take the weight off and make it easier for me to move around. I am hoping that the OFEV just might eliminate the need for so much oxygen. I used to be a runner and now I cannot even walk a block without getting winded and dizzy.
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Thanks everyone. Been a long day for me and I’m not in a good headspace to write at the moment. I will post something tomorrow as I really need to purge some thoughts.
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Thank you to EVERYONE for your kind replies.
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I am sorry you are going through this. I would give Hospice a call just to see what their thoughts are on the subject. I understand your fear in calling them but from your post it sounds to me like your Mom is already aware of the inevitable ….“she has been told that there was nothing that could be done, so since that time, she has refused further diagnostics…” I would suggest calling her doctor and having her doctor personally tell her that increasing the oxygen will <span style=”text-decoration: underline;”>make her more comfortable</span>. That is the goal here. To make her more comfortable as she goes through this. Hospice does soooo much more than you might realize. I experienced their wonderful work as my Mother and Grandmother died. They are there to help the caregivers not just the dying. They offer a compassionate ear and advice. Of course, they are limited in what they can and cannot say but they are extremely informative, supportive and helpful. Reach out to them and my prayers are with you.
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Oh no. I live on an island and looking into starting Ofev. I am always outside. I hope Ofev doesn’t have the same side effect as the Esbriet.
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WOW! Thank you to all of you! My pulmonologist is looking into B-I. I truly appreciate he time each of you took to answer my question.
GratefulDeb
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I live in the U.S. Virgin Islands so I enjoy the beach, the rainforest and the beautiful people here. I enjoy living on an island hilltop that overlooks the Caribbean Ocean. I wish I could get our more but due to my PF and being on oxygen 24/7 limits my life. I enjoy making people laugh. I enjoy music and writing. I enjoy being with my little tribe of island friends here. I enjoy a nice meal. I enjoy painting and when I have my good days…..I REALLY ENJOY THOSE GOOD DAYS. Monday was a GREAT day…..after work hubby and I went to our favorite beach bar & grill and listened to live music, having some appetizers, a few drinks and being able to reconnect with people I haven’t seen in awhile since I’m pretty much homebound except when I fly to Miami for my healthcare. I try to find something to be grateful about every single day. Somedays it’s a real stretch but I find something for which I am grateful.
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I also chose not to “get on the list”. I am not frightened of dying. I am at peace with the idea and I am working towards making the rest of it the best I can. I’ve lived with this since 2008 and it has progressed over the years. I’ve lived a fantastic life and I am ready for more.
Namaste,
GratefulDeb -
That’s great news!!!
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Thanks Doc. I do not have the “good” Medicare Part D plan. I reached out to the drug manufacturer and am going through the process of trying to get their financial assistance and I do believe I qualify…..at least from the telephone call I had with them I am now hopeful.
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That’s exactly my fear, Chris. I read somewhere that there is a slight risk of biopsy triggering exacerbation
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Oh God. I could not have said it any better than Tonya Worley said. All of it resonates with me. Tonya, you took the words right out of my mouth. Asking for something for pain has become something of shame. I asked for something for my pain and was met with a big NO. This disease IS painful. Unless you have directly experienced it, you cannot fathom the pain of feeling like you are breaking ribs coughing, a back that hurts from coughing, muscles that are tight, a raging UTI from being flat on your back for weeks. I asked for narcotic cough syrup so I could get some sleep. NO. I have an illness that is chronic and life-threatening and yet everyday I fight ….I continue to fight . ….and I continue to laugh. I’ve even been told I am “end stage” and yet there are no palliative care inquiries or concerns. I am an educated patient and when I begin asking questions that are uncomfortable I become “flagged” as a “difficult patient”. This is MY LIFE. Don’t put a label on me. Thanks for this post. Chin up folks. We got this. 🙂