Bronchiectasis and now diagnosed with Idiopathic Pulmonary Fibrosis

Posted by Kitty A. @kitten3, May 23, 2022

Have any of you had a CT & diagnosed with Bronchiectasis & told it was not terminal and 2 yrs later have another CT just to find it’s doubled in those 2 yrs and now it’s Idiopathic Pulmonary Fibrosis which they say is terminal?? I fused with my dr. For 2 yrs telling her I was getting worse but she never did anything different like ordering a CT after one year to ck on it. I was never told it could go in to IPF. My big sister got it 30 yrs after she had mega doses of Chemo to save her life. They warned her it could happen, but she had 37 yrs of good life. I’m concerned b/c I just had to turn up my oxygen to 8 & still my oxygen levels drop in to the 70’s when I just get up to go to bathroom or kitchen. It’s a horrible feeling when you can’t get enough oxygen. Any good ideas of how any of you handle it?? Thinking of second opinion & if I’d qualify for lung transplants.

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Sue, Volunteer Mentor | @sueinmn | May 23, 2022

I'm sorry to hear about the difficulty you have had in getting a diagnosis. Unfortunately, when it comes to lung diseases this is not so unusual - many present with similar symptoms, it takes some time to sort out the specific disease.
Here is some information to help you get started in your quest for good care: https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/symptoms-causes/syc-20353690

I will tell you that I have a friend who has PF, it was diagnosed over 10 years ago and he has been receiving treatment, but has decided against a lung transplant for a variety of reasons. I chatted for a long time with his wife last week, and was pleased to hear that they are still living a full, rich life in spite of his being on oxygen full time. Yes, they had to make adjustments, they auto tour now instead of hiking, keep plans flexible, hire out yard work... but they are serenely living their best life, even though very different than what they imagined.

The key, for them, was a team of doctors expert in treating PF. Have you considered seeking care at Mayo? Here is a link: http://mayocl.in/1mtmR63 Or another multidisciplinary health center that specializes?

Have you decided on a next step yet?
Sue