Hi all you out there with PF. This disease showed up on a chest x-ray I had in 2007. My doctor didn’t let me know about it and in 2012 I had pneumonia and an internal specialist I saw at the time, informed me that I had Pulmonary Fibrosis. I have been seeing a Respirologist since then, but as we all know there is no known cure for this disease and it will and is getting worse. I have been a very healthy person all my life. I was a power walker, a hiker, bicycled, swimmer and loved to jog. All this takes good lung control, so when I discovered I had this terrible disease, I was determined to continue with my usual activities. Well, over the past six years I have had to decrease my activity and now I am down to a slow walk. Other than this disease , which takes a lot of my energy, I am otherwise a very healthy person. I have not being a smoker, never did drugs of any kind, eat healthy, but for some reason I now have PF. I guess, because of the not knowing the cause of this disease, my specialist says it is IPF, just because they don’t know what caused me to have it, but it really is much the same thing. Has anyone out there heard of Stem Cell transplant for PF? I was talking to a doctor in Pittsburgh who does Stem Cell treatment via an IV. He is willing to do this for a cost of nine thousand American. The Stem Cell he uses is from the umbilical cord of C-section dilerveries. Has anyone gone this route, or has anyone heard of this? Sure would like some feedback to this question and also just some conversation from you. Hope to heard from you.
Hi kiera, I too, have pf, was diagnosed ten years ago, and now I have mac. I was on the big 3, also on an iv drip, but now I'm not on any of those meds. The pulmonary doc states that after taking all those meds, I still have a small cavity of mac. I work everyday, walk everyday and pray every day.
Hi all you out there with PF. This disease showed up on a chest x-ray I had in 2007. My doctor didn’t let me know about it and in 2012 I had pneumonia and an internal specialist I saw at the time, informed me that I had Pulmonary Fibrosis. I have been seeing a Respirologist since then, but as we all know there is no known cure for this disease and it will and is getting worse. I have been a very healthy person all my life. I was a power walker, a hiker, bicycled, swimmer and loved to jog. All this takes good lung control, so when I discovered I had this terrible disease, I was determined to continue with my usual activities. Well, over the past six years I have had to decrease my activity and now I am down to a slow walk. Other than this disease , which takes a lot of my energy, I am otherwise a very healthy person. I have not being a smoker, never did drugs of any kind, eat healthy, but for some reason I now have PF. I guess, because of the not knowing the cause of this disease, my specialist says it is IPF, just because they don’t know what caused me to have it, but it really is much the same thing. Has anyone out there heard of Stem Cell transplant for PF? I was talking to a doctor in Pittsburgh who does Stem Cell treatment via an IV. He is willing to do this for a cost of nine thousand American. The Stem Cell he uses is from the umbilical cord of C-section dilerveries. Has anyone gone this route, or has anyone heard of this? Sure would like some feedback to this question and also just some conversation from you. Hope to heard from you.
@keira Hello, I can relate to several things in your message. Especially about others understanding the seriousness of the disease. I too,have been and try to continue to be as active as I can. Fatigue is a problem but it is difficult for friends/family to grasp. It is hard for us all. My faith has been a source of strength for many years and recently I have begun a Centering Prayer practice that involves times of silence. I find this calming. Blessings to you!
Thank you windwalker. You were not being a downer, just speaking reality and I so appreciate your reply. Our insurance would not cover the cost. I will keep staying positive and do what I can do one day at a time. How are you doing? How long have you had this disease?
@keira Good morning. I apologize for the delay in getting back to you. I am struggling with the return of a pinched nerve in my back and so took a break. You asked how I am doing with my disease; I am doing pretty well. I am breathing wonderfully, but, have serious shortness of breath upon doing any kind of seriois movement. Enough about me, how are you? I was glad to read that you have your faith and for support. Have you looked into a lung transplant?
My husband was just diagnosed with IPF and we are just now trying to digest what this means. He has all of the symptoms in the brochures we were given except the fingers and/or toes becoming flat on the tips. He will be starting on one of the meds as soon as it arrives. I will be checking into this group to learn anything I can about what to expect as this disease progresses. Sad to be writing this. Fran Eaton
Colleen Young, Connect Director | @colleenyoung | May 23, 2018
Hi @frane1939, a new diagnosis of PF is a lot to digest. And I’m sure that both you and your husband will interpret and cope with what you learn differently, and together. I, too, am glad that this group is here to help answer your questions and share their experiences. What medication will your husbands be starting?
Colleen Young, Connect Director | @colleenyoung | May 23, 2018
@rcfan9 and @bergw2818, I see you both answered “yes”, but I’m not sure which question you were answering. Perhaps it was windwalker’s question about whether you have looked into lung transplant. In any case, it would be great to get an update from both of you. How are you doing? Any thoughts for Fran? She has just learned that her husband also has pulmonary fibrosis.
My husband was just diagnosed with IPF and we are just now trying to digest what this means. He has all of the symptoms in the brochures we were given except the fingers and/or toes becoming flat on the tips. He will be starting on one of the meds as soon as it arrives. I will be checking into this group to learn anything I can about what to expect as this disease progresses. Sad to be writing this. Fran Eaton
@frane1939, I am so sorry to hear of your husband's diagnosis. As a patient of a serious lung disease myself; I know from experience how miserable it is when your breathing is impaired. Is he open to being online and participating in this support group? Many of us find it very helpful. I do know of two others on here with IPF. @bleo and @keira. Hugs to you and your hubby. -Terri
Hi @frane1939, a new diagnosis of PF is a lot to digest. And I’m sure that both you and your husband will interpret and cope with what you learn differently, and together. I, too, am glad that this group is here to help answer your questions and share their experiences. What medication will your husbands be starting?
My husband will be taking Ofev when we hear from the Speciality Pharmacy. Today is a week since he got the diagnosis. And, he does plan to join the group. Thanks for your reply.
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Hi kiera, I too, have pf, was diagnosed ten years ago, and now I have mac. I was on the big 3, also on an iv drip, but now I'm not on any of those meds. The pulmonary doc states that after taking all those meds, I still have a small cavity of mac. I work everyday, walk everyday and pray every day.
@keira Hello, I can relate to several things in your message. Especially about others understanding the seriousness of the disease. I too,have been and try to continue to be as active as I can. Fatigue is a problem but it is difficult for friends/family to grasp. It is hard for us all. My faith has been a source of strength for many years and recently I have begun a Centering Prayer practice that involves times of silence. I find this calming. Blessings to you!
Yes
@keira Good morning. I apologize for the delay in getting back to you. I am struggling with the return of a pinched nerve in my back and so took a break. You asked how I am doing with my disease; I am doing pretty well. I am breathing wonderfully, but, have serious shortness of breath upon doing any kind of seriois movement. Enough about me, how are you? I was glad to read that you have your faith and for support. Have you looked into a lung transplant?
My husband was just diagnosed with IPF and we are just now trying to digest what this means. He has all of the symptoms in the brochures we were given except the fingers and/or toes becoming flat on the tips. He will be starting on one of the meds as soon as it arrives. I will be checking into this group to learn anything I can about what to expect as this disease progresses. Sad to be writing this. Fran Eaton
Yes
Hi @frane1939, a new diagnosis of PF is a lot to digest. And I’m sure that both you and your husband will interpret and cope with what you learn differently, and together. I, too, am glad that this group is here to help answer your questions and share their experiences. What medication will your husbands be starting?
@rcfan9 and @bergw2818, I see you both answered “yes”, but I’m not sure which question you were answering. Perhaps it was windwalker’s question about whether you have looked into lung transplant. In any case, it would be great to get an update from both of you. How are you doing? Any thoughts for Fran? She has just learned that her husband also has pulmonary fibrosis.
@frane1939, I am so sorry to hear of your husband's diagnosis. As a patient of a serious lung disease myself; I know from experience how miserable it is when your breathing is impaired. Is he open to being online and participating in this support group? Many of us find it very helpful. I do know of two others on here with IPF. @bleo and @keira. Hugs to you and your hubby. -Terri
My husband will be taking Ofev when we hear from the Speciality Pharmacy. Today is a week since he got the diagnosis. And, he does plan to join the group. Thanks for your reply.