Mary Frances
Forum Replies Created
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MAUDE is something you can check in with
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Have doctor increase your 2 liters of oxygen There are also other cannulas to use for continuous flow. For IPF they also have a full face masks. The doc may do walking and breathing test for you to see if you need your oxygen increased.
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Asking for prayers for my mother Emily. She was diagnosed in 2018. We are not sure when she actually got this disease. We have called in hospice & today being Easter had no care until 5:00. I called at 8 am eastern time. My mother gasped for air since 4 am night before. I’m messaging this to all so hopefully this helps other patients prepare for end of life. We were not. Her condition rapidly declined and she is now bedridden. She was doing ok on prednisone and then we started Ofev and added Tyveso. Now she is only on morphine and lorazepam to be kept comfortable. I wouldn’t wish this disease on anyone. It is heartbreaking to watch our mother and loved one suffer Please prayers
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My mother Emily was diagnosed in 2018 with IPF. We had here on bp meds and started her on 10 mg of prednisone. It worked wonders. Then they wanted her to try Tyveso and Ofev. She cannot tolerate the Ofev and stopped. I read Ofev takes 6- 12 weeks to really get inside of her body. At the 6 week mark they added Tyveso and inhaler 4 times a day. She used that for 10 days (Ofev 6weeks Tyveso 10 days) When the Tyveso was added she was extremely ill with upset stomach. She then had a bp reading of 200/101. We were at the ER twice. They were not familiar with these medications did not know how to treat her and sent her home after being bp way down. Now she is not in anything but Almodapine 2.5 mg a day. Her numbers are good and she uses 4 liters of oxygen at night and 8 during the day. They weaned her off the prednisone. Now she has no energy at all. She has headache’s on the right side of her head and her stomach has been hurting. We were told to call hospice. I am upset b/c as I posted before the prednisone and her bp meds had her able to have quality of life. We have one more appointment to hopefully have a CT to see if her disease has progressed so badly or did the over dose of the Ofev and Tyveso make her so sick. Any thoughts would be greatly appreciated. My prayers are with all of you!
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Hello my Emily (my brave sweet mother) She has just joined I am praying for all of you. We must share our experiences to help others🙏 You are right Pete everyone is different and needs to be monitored closely We had such a scare
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Praying for you My mom has the powder form 4 times a day On day 9 her bp was 200/100 we were calling an ambulance Had to stop the Tyveso & Ofev because she couldn’t stop throwing up the next two days. Made two trips by ambulance over the last 3 days. Her bp is finally coming down and staying at 140/90 What a horrible experience No side effects mentioned high bp All her effects pointed to a Tyveso over dose