Diane B
Forum Replies Created
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Something I would like to add is to see if your Dr. recommends pulmonary rehabilitation. I had a friend who said it helped him tremendously with his IPF. Your brother also thought it was helping him stay more fit and I think it helped his mental state as well. I wish he had started much sooner. Hugs.
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I purchase serra for my husband. I believe it is Doctors Best. I am thinking he goes back and forth between 120,000 and 240,000. Im not sure. He takes both OFEV and serra . Has been on serra for several yrs. now. OFEV maybe a yr or two.
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Do most transplant patients end up with other organ failure or cancer from all of the drugs?
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I thought that was still in trials.
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My niece who has a genetic condition similar to cystic fibrosis, who gets pneumonia a lot and can’t fight infections because her cilia do not beat properly…was not vaccinated. She had bacterial pneumonia plus covid, recently. We thought “oh boy…this is not going to end well” Around day 6 she got the monoclonal antibodies infusion from her hospital in S.D. By the next day she felt way better and by day 12 went back to college. She was still on anti-biotics for the pneumonia. (She pretty much lives on anti-biotics)..tested negative for Covid maybe a week later. She had gone home where my sister and husband cared for her, neither vaccinated. Neither of them got Covid. They have comorbidities. It’s so strange how Covid attacks each individual so differently. Concerning the 3rd shot. My husband told me maybe a week or two ago that he looked into it and he is not eligible. Ill have to see if he has checked back recently.
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Please keep us updated!
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Oh boy…thanks for sharing that. I had my husband start taking the serrapeptase , I think, back in 2016. I think I had been taking it even before then, but I forget what for. I think he takes it in the a.m. with his other meds. I keep hearing of cough and mucus and until just recently he has never had mucus issues…a cough sometimes but not at night when he is asleep. He takes a bunch of stuff along with OFEV.
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Are you referring to monoclonal anti-bodies infusion?
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I am so happy for you. We are Christians and my husband has been prayed over. I had another lady I met through a group who wanted to pray over him at a church but Covid was surging and he did not feel comfortable going. I keep asking God to heal my husband of this. He was diagnosed , I believe Dec. of 2016. They misdiagnosed him and I asked him to please go get a 2nd opinion. He had a lung biopsy and the surgeon stated it came back negative. We were jumping up and down crying, so happy….they sent it to another lab because they kept insisting he had IPF. The other lab stated he did have it. So disappointing and devastating. He did have a visit where his number improved and the Dr. was pretty surprised. I do not remember what numbers it were that improved but he had lost weight and had been exercising. Nobody ever recommended he go on OFEV. I even believe his Dr. played a role in the medication. Last July I could tell he had gotten worse. Back to the Dr. who is always wanting CT scans which really make me nervous..People say this Dr. is world renowned for IPF. Im not going to mention name or anything. Anyway since last July he struggles with getting short of breath. Before that he was climbing mountains with our kids. They put him on OFEV a yr. ago. He has done fine on it. He takes it very religiously at 6 and 6 and eats a lot of protein with it. He goes to a Chinese buffet and gets a week worth of food and has it for breakfast every a.m….lots of Mongolian beef, general Tso’s etc. I get nervous because he seems to get winded very easily now and still has 7 yrs. to go before retirement. We still have a teen at home. I am confused why they had him wait to take OFEV til he was way worse and had shortness of breath. He just found a guy at work who had a lung transplant and has survived 12 yrs. already and another guy at work with IPF. He has been so alone with this and I am hoping he reaches out and has someone to talk to. I pray God continues to heal your lungs. Please keep me updated.