Keeping weight on has been a chore. So, I have learned to eat a small meal about every three hours. The Nutritionist with my health plan has given me assistance with calorie dense foods, like dried fruit. That helps. I have also learned to eat by schedule rather than hunger. If it does not taste bad then I will eat it, I cannot wait for… Read more

Prayers for Larry’s family. Peace for Larry as he starts his new journey. Hope for all IPF/PF patients for a kind life and progress in treatment/diagnosis/potential cures. Regards, Darlene

Hello Mike,

I am glad that Ofev is working for you.  I have friends with Pulmonary Fibrosis, both IPF and other designations and many of them are doing well with Ofev and Esbriet.

I had a short term on Ofev and then switched to Esbriet due to the complications.  Esbriet worked well for several months then my liver was impacted (those blood… Read more

when my husband died of IPF in 2003 he was given medication so that he was unaware of the lack of oxygen, but also unconscious.  Hard to watch but better than the panic and terror that lack of Oxygen creates in an individual.  Talk about it with your Dr. and know what you expect and want and share with your family.  I now face the same future… Read more

Hi,  I know this is an older post (2020) but am just now reading it.  I was on OFEV,  slowed the IPF but was unable to live with side effects and 30 pound weight loss.   After a break went to Esbriet.  Good results modest side effects for the first nine months. Then the negative blood test for liver function.  My liver shut down and liver… Read more

Hi Charlene,
I understand how you feel, I was there when first diagnosed. Then I realized that I needed to talk about it so I could learn more, this was important since I had to live with it. Understanding it is part of the lesson. You are right, at this moment you may not improve if the meds are not for you. That said there is so much you… Read more

Consider going to an office supply store and look at some of the carts that are used to haul around laptop computers. They have a number of pockets and I use it to carry personal items and strap the Portable on with a strap. It is easy to roll and meets carry on requirements for the airlines. However, because it is for your Oxygen it is… Read more

My four descriptive words for IPF:

1.  Challenging

2.  Motivating (  It moves me to know more and do more in a timely manner)

3.  A Gift  (  Not from my wish list/ however it has brought me many blessings and a better awareness of blessings)

4.  Opportunity ( Not the one I was looking for, but one that will help me be more productive, find… Read more

Hi,
I lost a lot of weight and needed to eat more proteins so I had to get a bit creative. I found using lentils with almost anything helped. Mix and cook with stewed tomatoes, soak and add to any kind of casserole, split peas and lentils make a delicious soup. You can enhance with flavors of all types: such as Italian,… Read more

Hi,  I have found the saline spray from Arm and Hammer is most helpful with the dryness from the oxygen for my nasal passages.  Easy to use, comes in a pack of three.  Not expensive and really has helped me.  Might be worth a try.  God Bless you and your Dad as you trek on this path, it is rocky for sure, but good stuff happens too! Regards, Darlene