Catherine Leonard

Agree- that it’s nice to get a little attention…

To Paraphrase Dr. Roach (San Gabriel Times)  – “Of all the medicines that interfere with a vaccine, Rituximab (a chemo drug) is probably the most significant.”  He says it’s best to get vaccine either before starting chemo, or to wait until 12 months after last treatment.

**Noted: Having IPF, a…[Read more]

Martha,

Not knowing what part of the country you are in or health care options available I’m not sure this will be helpful, but this may be of interest.

Having had two lung biopsies the traditional way (needle through back into lung), and a robotic bronchoscopy/biopsy, I would ask if it is possible to secure the latter.  The Robotic…[Read more]

A Big hug back to you Dear Gweneeth!

Anger at the disease, temper tantrums and pity parties… I can identify.  Calling the doc for mild-antidepressant?  Also considered!  Hanging on to Jesus’ robe?  That too.  I chuckle over your insistence at getting people to identify what they want of yours and to mark it with blue tape.  And… the best…[Read more]

I have waited too long to respond!  Thomas: Thank you for starting this topic.  Frightening as it is, we become stronger when we can face our deepest fears.

Christie: You are delegated as a ‘participant,’ and I had to check.  Your wisdom and kind responses made me think you are a moderator.  You have the makings of a wise counselor.  Thank you…[Read more]

Dear Thomas,

A pertinent question.  The thought of ‘waterboarding, fish out of water,’ etc. is not especially enticing is it?  State of mind, living and staying active are the focus here, and yet every one of us is more than likely keenly aware of our end of days and breath.

The thought isn’t as morbid as it is uncomfortable, but one we all w…[Read more]

Definitely interested!  Especially after receiving news that Medicare has denied Esbriet for me.  I’m not sure why at this point, and am in the very early stages of working with pulmonologist regarding an appeal.  Alternative treatments and clinical trials that may reverse IPF are golden and close, yet far away!  Hopefully those with Stem-cell suc…[Read more]

Christie,

Sorry to hear that early x-ray ILD symptoms were missed!  I am hoping the lung transplant has and will provide her with many more years.  Thank you for your encouragement and description of your mother’s case, as you say each case is different.  I may not know what the future holds, but I trust in a God who does, and am blessed to be ab…[Read more]

Marilyn and Donald,

Marilyn – re: hypersensitivity profile blood test – Yes. The test was positive for a reaction to Aspergillus fumigates.

Donald – Since my ‘short of breath’ symptoms were first noted in 2013, with subsequent (numerous) PFT tests, CTs, 4 Bronchoscopies, 2 lung biopsies, and one robotic bronchoscopy.  A nodule, or cyst was…[Read more]

Charlene,

Thank you.

For now, I continue to benefit from information available in PF news, and appreciate the way you manage and respond with care and kindness to posts.  I know you are a blessing to many.  I look forward to hearing from folk diagnosed with the enigmatic HP.

[email protected]

Chronic cough treatment, caught my eye.

Me: Diagnosed IPF 2018 / tumor of unknown cause found 12/2019 which grew to 7cm in lower right lung lobe  / Diagnosed with non-Hodgkins Large B cell Lymphoma 11/2020 / Have undergone 4 of six chemo treatments, and have been dealing with unexpected continuation of chronic cough even after the last PET scan…[Read more]

Joe,

I thought the same thing, as Covid-19 creates a ‘ground glass’ lung appearance typical of IPF.  Perhaps some day… there will be an actual cure.  One can hope, it’s just too bad the research is amped up for this horrible pandemic.

In the meantime we stay sheltered in place.

Catherine