Pulmonary Fibrosis News Forums › Forums › Treatments and Science › Mayo Clinic
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Mayo Clinic
Posted by Chris lynch on December 1, 2023 at 6:47 amHas anyone used Mayo Clinic for diagnosis and treatment of ILD?
yianni replied 1 month, 2 weeks ago 8 Members · 10 Replies -
10 Replies
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Yes, I am currently being seen at the mayo clinic in Phoenix and I have been under their care for the last five years. I had my lung biopsy done there which confirmed my diagnosis and I’ve had no progression and I’m very happy with the care I get there.
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By the way, I was referred to the mayo clinic because my first pulmonologist, who diagnosed me did not agree with other doctors trying to determine the cause of my pf and what next steps should be taken.
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I am a patient at Mayo in Rochester MN. I had a couple surgeries done there – shoulder replacement and surgery on my elbow. I was seeing a different pulmonologist in another clinic but couldn’t get a response from him on questions I asked so since I was already seeing doctors at Mayo I had my rheumatologist refer me there. They are located on the opposite side of the state so it’s a bit of a drive but I find it is well worth it. I’ve seen this pulmonologist for almost a year now. So far I am satisfied!
Carol
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Hi Carol
May I ask your age age what stage u r at?? I had considered it. But I don’t have a good support system to get me there. I’m not sure I have enough of energy at this point to get through the testing. I was all setup for the testing and changed my mind. Of course now I’m questioning my decision. I’m 73 and was rejected for transplant. My age and health history made me a bad candidate. So I’m very happy with my current pulmonologist. I think I’ve waited to long for changes to my treatments. Have been on two meds and had to be taken off. My side effects were so bad I was admitted twice almost didn’t make it.
Any info would be appreciated.
Thank u Debbie
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I was diagnosed by my primary doctor locally, sent to a local pulmonologist who needs to be in a different profession. Thankfully I was able to get into Mayo Clinic in Jacksonville, FL in May 2023. I had a very thorough exam by my pulmonologist there who, after many tests diagnosed me with NSIP. I am taking 10mg of Prednisone daily and 2000mg of Mycophenalate daily. I know that this pulmonologist saved my life. I thank God every day for Mayo.
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I was diagnosed in 2020 and went to the Mayo Clinic in 2021 for a second opinion. I am very glad that I did because they determined that I do have IPF although I have another ILD. There was minimal testing ( PFTs, CT, echocardiogram) which was completed in one day. I live in Maryland and they appreciated that I could not stay in Rochester very long. I had a telephone visit 6 months later and was seen in person in 2022. I have 6 month telephone visits since. A Mayo physician recently presribed Lyrica for my cough and it has improved it by about 75%. I like my local pulmonolgist and he reviews the Mayo findings as they review his. I can’t say enough good things about the Mayo Clinic. I think they will understand your anxiety about the testing and schedule it accordingly. By the way I am 77 and also rejected for a transplant. Good luck!
Judy McGill
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Sorry – I meant to say that they said that I do NOT have IPF. Judy
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I was seen locally and diagnosed as IPF but not really sure. I was passed from my pulmonologist to a critical care pulmonologist in the practice. Confusing diagnoses. I decided to go to Mayo in Jacksonville, pulmonologist reviewed all my records and definitely said no to IPF. First person to identify right side of diaphragm elevated which could cause lung capacity issues in breathing testing. 30 mg presidone for 2 weeks, 20mg next 2 weeks, 15, for 2 weeks, then 10 mg till next visit Nov 2024 at Mayo. Great services and doctors. I was prescribed Ofer and couldn’t qualify due to income unless I could pay 13k per month. Then espirit same issue.
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