Mayo Clinic Connect
Is there any one out there that has PF?
I would love to hear from anyone 70+ and has had a lung transplant.
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@dogwood928, Duke Medical University in N.C. has an extremely good reputation for survival rates. I do know someone who had his there and he is going on year 8 survival now. He was in his early 60's when he had it done. If age is ever a setback at a place you choose, then keep in mind that the Mayo may take you on. I hope that you will continue to post here concerning your journey as many of us may be going the same route.
I am wondering about any new drugs for pulmonary fibrosis
My Dad has PF. He's been on 60, 40,20 of prednisone since March 2018. 2-3 liters oxygen. Had pneumonia requiring 3 rounds of antibiotics past three weeks. He has Lupus and has already had 2 infusions of Rituxin. Can you share your PF details with me?
Just diagnosed, how are you doing?
Welcome to Connect @sassyboots. It must be difficult getting a pulmonary fibrosis diagnosis. You are not alone as you navigate all that this entails, and you can ask fellow members like, @frane1939 @rosie82 @sophie1019 @cognac @waterboy and others, questions to learn more about how they have handled PF, as well as read past posts.
What resources did your doctor give you to learn more about PF? Have you found any on your own? What questions might you have?
Liked by cognac
I went to the University of Ky. and had lung function tests, a bi-lateral chest x-ray and blood work. I had same tests there in 2016,and there was no change. Actually improvement in my lung function! Dr. Said I could breathe room air while inactive, maybe cooking, etc. He did not recommend a transplant, but I will go back in 6 months for a check. I went to my pulmonologist. Week later, and my lung function test showed improvement there, as well.
Liked by Terri Martin., Volunteer Mentor
Sorry! This is in reply to Terri, volunteer mentor.
@dogwood928 'Some Improvement'! I will take that! That has to be sweet music to your ears. Whatever you are doing; keep it up! I am so happy to hear that.
@dogwood928 What do you attribute to the improvement on your lung function?
Many of you have crossed paths with @windwalker in the Lung Health group. Check out today's member spotlight and learn a bit more about Terri.
– A Breath of Fresh Air: Meet @windwalker https://connect.mayoclinic.org/page/about-connect/newsfeed/a-breath-of-fresh-air-meet-windwalker/
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Yes, diagnosed March 2018. Been taking Esbriet since April and in Pulmonary Rehab. Searching for medical trials that offer stem cell treatment or medication that will help. Very depressing at times. No cure!
@wba3721 I know it is a tough diagnosis to receive, as well as a tough disease to live with. Do you find that the Esbriet helps?
I was diagnosed with IPF(Idiopathic Pulmonary Fibrosis) about 2 years ago. I have been on OFEV 150mg 2X daily. This past February I had stem cell therapy. In May 2018 I had a breathing test to see where I was. There was no change during the past year so that was good news to me that I am stable. I do have an annoying cough after some exertion when I work around the yard so I have to pace myself but that is ok, I'm still able to do most of what I want. Oh, BTW, I'll be 80 in about a week so life is good.
@robinson i was diagnosed with IPF in July and also take Ofev 150mg2Xday. I went through every emotion because I thought I was going to die and I just turned 66! I have decided I’m not going to die of this, but I’m going to live with it. Were you ever a smoker?
Where did you get the stem cell therapy? I was diagnoised with IPF in March 2918 and have been taking Ebriet. I thing i a getting worse. More difficult breathing and can not exert myself. I think stem cell therapy may be the answer for me but can not finf a legitimate provider.
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