

Noname
Forum Replies Created
-
Hey JLR, I was diagnosed August of 2023. I get short of breathe very often, but it is worse in the mornings. My pulmonologist has me on 3 different meds that I use in my nebulizer. I have found them not to help. He also has me coming back every six months. I just do not find that the doctors take you seriously even though they told me that Progressive Pulmonary Fibrosis would be what took my life. Only God knows that , not a doctor. I went to my dermotologist a month ago because I had some concerns about a couple places on my skin and a problem with itching really bad. He put me on Dupixent. It is a shot you take every two weeks. This is a drug to heal your skin from within but it is also perscribed for asthma. I have a really hard time breathing when I get up in the mornings but this medication has helped. I was really surprised. I have not taken ofev and don’t plan to until I have to. I wish you all the best as well as all on this forum. Prayers for everyone.
-
I was diagnosed with Progressive Pulmonary Fibrosis August 16th in 2023. I was having trouble breathing so I went to the ER. They did a CT with Contrast and found it. When I get up in the mornings I have a terrible time breathing for about 2 hours until I get to moving around and walking. Some how I think all that mess settles in my lungs at night. I also have emphysema which complicates it even more. I have not been perscribed OFEV . I only use 4 different meds in my nebulizer but they don’t help. I do better on up in the day. I use 4 liters of oxygen at night and if I get short of breathe during the day I use it. I live in NC and my lung Dr. is in Winston Salem. He does not do much to help. I think if you are older they don’t seem that concerned. He just tells me this is what I will die from. Not a good thing to say. I am 66 years old. I know my only help is that God will take it away. I know He can. I pray for your husband and everyone on here . I ask for all prayers to. May God bless and heal all.
-
I was diagnosed Aug. 13th of last year. I went to 2 different doctors and told me I had pneumonia. Then they called me and told me I did not have it. So I had an episode of not being able to breathe. I went to the emergency room and they did a CT with contrast and found Progressive Pulmonary Fiibrosis. The doctor told me then there was nothing they could do and sent me to my pulmonologist. No better and have not started on OFEV
-
Hello, I was diagnosed with Progressive Pulmonary Fibrosis on August 16th 2023. When I first went to the doctors both told me I had pneumonia. Later they got in touch and said I did not have it. I kept having problems breathing and coughing so I went to the ER. They did a CT and found the PPF. The doctor came in and told me I had something new and there is no cure for it. He told me he knew a lady that had passed with my condition at the age of 33. I went to my PCP and he came in and told me he hated to tell me what he had to tell me but that the PPF was going to be what I would die from. I went to my pulmonologist and I ask him if he agreed with what the other drs said. He told me it was up to God and to pray. I have a terrible time breathing and use 3 different kinds of meds in my nebulizer. I wake up between 1:30 and 3 every morning coughing and having trouble breathing . My Dr. has not put me on OFEV but I seen it mentioned in my notes. I do not think my insurance will cover it and I am 66 on SS. So I can not afford it. I do not feel well anymore and can not do things like I use to. If I get in a hurry my heart rate shoots up and that makes the breathing worse. My PCP told me if my meds did not slow the PPF down that I would have 12 to 18 months to live. Has anyone else had this experience or anyone have the progressive kind. Need to know how you feel. I pray everyday for God to take this away because I know He can.
-
I was diagnosed with Progressive Pulmonary Fibrosis in August 2023. I am so sorry for your loss. When I get up in the mornings I am so short of breath, It is really bad. When I try to do things like I use to it causes my breathing to get worse and my heart rate goes way up. My oxygen really does not go down that much. It lowers when I am resting or sleeping. I have oxygen for night . But don’t use it during the day unless it gets low. As for the anxiety it is bad. My doctor has not given me OFEV . He only gave me different kinds of meds I use in the Nebulizer. They do not help. My PCP gave me medicine for a anxiety. Which helps some. I will be having a high dose CT scan soon to check the progress of PPF. I just don’t know what to do with my SOB but I guess I have to deal with it. I pray for each and everyone on this forum. I know there is no cure but I also believe in prayer and God’s healing.
-
Could you tell me more about the Concentrator. I have not heard of that or what it does for you.
-
I am 66 years and have other health problems and my Drs. have not mentioned a lung transplant but that is what I need because I also have COPD and emphysema. My life has changed so much since I was diagnosed Progressive Pulmonary Fibrosis. I can not do things I use to do because I get so short of breathe and my heart rate goes really high. I am going to a cardiologist today also.
-
Thank you so much for your encouragement. I am having a really hard time. So bad in the mornings. I pray and thank God for another day. I had a PET scan on March 1st. It shows lung mass. I have not gotten results from my Dr. yet. My Pulmonary Fibrosis seems to be worst. I have not been on OFEV yet.. I ask God to help you and each and everyone on here. His will , will be done. I know He is my only hope as of right now. I have faith and believe. God bless you my friend.
-
Thank you so much for your encouragement. I pray every morning when I am up at 3 am or before while I sit and struggle to breathe. I am having another CT scan today to find out the progression of my Progressive Pulmonary Fibrosis. I will be going to Winston Salem, NC tomorrow to see my pulmonologist.. I think he will probably put me on Ofev as he has mentioned it in his notes. I pray God touches each and everyone on this forum that has this terrible disease. It has changed my life in so many ways. I can not do a lot of things I use to do because I get SOB. I live on a farm and can not help like I use to. But I know God can heal me. Anyone that has true faith and believes knows God is with us all.
-
It helps me to read these comments also. I was diagnosed 6 months ago with Progressive Pulmonary Fibrosis. Has anyone else been told that theirs was progressive. I have such a terrible time in the mornings when I get up. I can hardly breathe and am always up between 1:30 and 4 am. This disease has changed my life in so many ways. Some days I am sick all day. I have lost 36 pds. and my BP stays low. My pulmonologist has not put me on Ofev yet but I have seen notes about it in my chart. With all the problems I have I do not think I can tolerate it. I use 4 different kinds of medication in my nebulizer but I do not think it helps. I also have COPD and Emphysema. I pray for all of you and I desire your prayers also.