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I am wondering if Emphycorp could or would request fast track designation by the FDA?

Thank you, Julie! I am so sorry for your loss! I plan to continue to live life to the fullest and am getting over that ‘bump in the road’ with my friend’s insensitivity and am in good spirits again! It was a hard lesson, but I will guard my heart a little more and not expect everyone to be as empathetic and compassionate as I thought they would.…[Read more]

Diane, I am so sorry you are also struggling with IPF and depression. Has your doctor talked to you about OFEV or Esbriet? I have read that they can significantly slow the progression of PF and I went on OFEV soon after my diagnosis and will see in Jan after another CT how my scarring has progressed (hopefully NOT progressed!). You need to have a…[Read more]

Thank you, Christie! Very kind and wise words. May you have a blessed day! Lori

I am believing for a cure and have participated (along with 9 other family members) in two research studies aimed at finding the cause of familial PF so a cure can be found before it passes down to our children and grandchildren. May you have a blessed day, Lori

Don, I am just now getting back to you. Thank you for your kind words. I am sorry that you have IPF and had to retire from your profession, but I am happy that you see that ‘forced retirement’ as liberating! I like your statement that planning is necessary but worrying only creates fear. I have never really worried about what lies ahead, I just…[Read more]

Hi Mark,

I had started on a 40mg tapering dose. At the 40mg and 30mg dose, I had no dry, tacky cough, no post nasal drip, and no phlegm in my throat, it was wonderful. At 20mg my cough returned, although not bad and only a few times a day. Now that I am on 10mg (will be there for at least a year, unless I have an exacerbation), the post nasal…[Read more]

Willie, Thank you for writing and sharing your story! I am sorry that IPF runs in your family as well. I have said to my husband that I would rather have cancer for which there is some hope, than IPF which is terminal! I try to walk 2-3 miles every day and do as much as I can throughout the day, but I do go to bed early and stay in bed until I get…[Read more]

Thank you Ron for your kind words and prayers. My 53 year old nephew is 17 months post-transplant and I remember the months leading up to his surgery. Praying for the perfect match to become available when you are ready and that you have a successful surgery and quick recovery! Blessings, Lori

Hello Lori,

I share your struggle.  I can stay positive  but not all the time. I am going through pre-transplant work up. I will need a bilateral transplant. Life has its twist and turns,  somethings are out of our control.  I will pray for you, may the Lord strengthen your faith and his spirit walk with you on this journey. 🙏

Ron

I just saw my pulmonologist on Wednesday and he knew nothing about N115. It makes me wonder how closely our US doctors are following research for things like N115.

Since I wrote that last piece I have stayed on Prednisone at 20 mg per day. No side effects . Can breath normal. My oximeter reads 94 and above. No more major couphing or dry heaves or phlegm.

Need to get another lung function test and CT scan to see if the grey matter I have had gone down. All I know is predisone is a wonder drug for me!

Remember the formula for water is H2O.

I have found that the ipratropium helps a lot.

Hi Mark I had this medication 20years ago. Started on 40mg,reduced to 20mg and was on that for five years. Took 2years to come off completely. I had put on 56lb in that time but I managed to lose it in about a year. Side effects for me were apart from the weight- a hump on the back of my neck,greasy skin , and facial hair. I was also hyperactive,…[Read more]

Soon after my original diagnosis of ipf a pulmonologist at National Jewish warned me not to stay on prednisone for “long periods”. I have found that 2 10 tablet 20mg courses annually (not consecutively) when traveling has been OK. Prednisone is definitely a “feel-good” pill for me so I’m careful.

You are definitely correct.

A 100yards and 2 minutes from Walmart, Sam’s Club where I got my 1st 2 shots, refused me a booster.

So don’t give up if you need it.

Got a booster at Walmart Aug 31 after I said we were regularly on Prednisone. It was a full dose of Moderna

Bill

Thanks for your feedback James.  I’m sorry you and your wife caught COVID but I’m glad to hear that you made it through without any major issues!  It gives me hope should I catch COVID.  I always worry about the respiratory issue being the most complicated but in your case that wasn’t so.  Keep up your speedy recovery.  Thanks!