Denise Stogdill

Hi Gavin,

I’m so sorry you’re having such a hard time both with your illness and your medical team.  Not being familiar with the medical program you have it’s hard to make suggestions.  But the first thing I would do is change doctors!  Or maybe you can attend pulmonary rehab.  This would help you learn how to calm yourself through breathing exe…[Read more]

Unfortunately Dee, as the others have stated, it’s really hard to find a doctor that’s going to first, validate the diagnosis, second, treat you with dignity and respect and third, really care about you!  I got to pulmonologist number three and he turned out to be the guy I want on my team.  I was lucky.  You can’t give up, especially with you…[Read more]

Hi Chris, the way my pulmonologist explained it to me simply is as follows:  if you have pulmonary fibrosis that is being caused either by Gerd or an autoimmune disease, like rheumatoid arthritis, they focus the treatment on the autoimmune disease or Gerd.  Doing that will stop or slow the cause thereby slowing down the scarring. However, if you h…[Read more]

Unless it’s absolutely necessary  I would not do it.  I had one last year to determine the type of fibrosis I had.  Although I did not experience exacerbation, it was extremely painful and invasive.  We did confirm that I had IPF and not NSIP which was the original diagnosis I had gotten from a previous pulmonologist. This  was terribly import…[Read more]

Kim, I’m so sorry for your loss.

I have had GERD and a hiatal hernia for the last 30 years.  I’ve also suffered with Rhuematoid arthritis for the last 10 years.  The first couple of pulmonologists that saw me told me that my pulmonary fibrosis was caused by my RA and my Gerd.  I was diagnosed with PF in March 2021 so I’ve only known of my PF fo…[Read more]

Hi Chris, I don’t know enough to tell you that when your chest feels “funny” it’s because the IPF is active or not.  But I do on occasion have an uncomfortable feeling in my chest area as well.  Mine feels like someone is sitting on my chest and even though my O2 sat is good, I feel like I’m working a little harder to breath. I’ve spoken to my…[Read more]

Hi John, I have IPF and began taking Ofev for the last 6 months.  I take 2000 mg of cellcept daily and I also do the Rituxan infusions every 4 months for the last 4-5 years.  I have done well with this compliment of medications.  I also get a little fatigued for around 24 hours after the infusion.  Good luck with your journey!

I’d love to be on the next call.

God Bless you and I hope it continues for a very long time.  My advice to you would be to stay active and do everything you want to do in your life NOW!!!  As my fellow warriors have expressed, this is a very volatile disease.  You never know when it’s going to rear it’s ugly head.  So enjoy no symptoms.  My motto is be happy, be healthy and be g…[Read more]

RIP WARRIOR🙏🙏💕💕🫁🫁🫁

Hi Wesley,

I was diagnosed with IPF RA about 18 months ago.  I immediately changed what I ate to decrease the amount of inflammation in my body.  So, I took out sugar, gluten, flour, alcohol, soda, caffeine (except for one cup of coffee in the am😊) and processed foods.  I drink loads of water, pedialyte for hydration and electrolytes and vi…[Read more]

We bought a tempurpedic mattress and it’s the best thing.  Sleeping with my head elevated is the best for me!

My happy place is sitting on the beach.  Although now I have to find happiness in sitting by the beach, under shade, if it’s during the summer.  I love going in the winter because I can get closer to the water!  While I have to modify my beach visits because of my IPF, I am grateful for being able to still go.  I love listening to the waves as th…[Read more]

UNFAIR, EXERTING, TROUBLESOME, EXASPERATING

I suffer from chronic pain.  I have fibromyalgia, rheumatoid arthritis, osteoarthritis and IPF.  I have a pain management doctor and he manages my pain with pain meds, topical pain lotions and lidocaine patches.  He is the best doctor I have had.  Find yourself a pain management doctor that will work with you to understand your pain. I hope thi…[Read more]

That’s what I’m hoping for!  And yes, my diagnosis is pf.

That’s part of my problem.  My pulmonologist doesn’t really care about helping me in the process of getting the medication.  As a result, I’m seeking a third pulmonologist opinion!

I was diagnosed with NSIP and Bronchiectasis a year ago. I was told then that I was in the moderate stage of my illness.  I use oxygen on exertion, 3-4L.  A good day for me is when I have the energy to do things at home or run errands.  A good day is when I run errands and I don’t think about the weight of my portable oxygen on my shoulder.  A g…[Read more]

Hi everyone, I thought I was the only one having trouble doing household chores!  I too have problems bending over to pick things up or to get things from a low drawer.  I use O2 when walking.  It helps very much.  I have someone who comes in to clean twice a month.  We are very blessed to be able to do this otherwise my house would be terr…[Read more]

Julie, my condolences on the loss of your father.  He’s in a better place now.