Forum Replies Created

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  • denise-stogdill

    Member
    March 21, 2024 at 2:41 pm in reply to: OFEV Side Effect reduced!

    I don’t like raisins so I don’t think this would be good for me. But I have found a cup of white rice or a cup of applesauce or even a banana before taking my Ofev 150mg does the trick. For some reason, I began suffering with GI side effects continuously during the last 5 months (I’ve been on Ofev since 2021). My PCP offered the above food items as foods I should try and they work! So for those like me that don’t have the taste buds for cinnamon & raisin, alternatives!

  • denise-stogdill

    Member
    January 27, 2024 at 5:00 pm in reply to: NEW Covid vaccines

    Hi Carolyn, I’ve been diagnosed with IPF since March 2020 and I’ve been taking Ofev for almost 2 years. I’ve done the COVID, FLU and RSV vaccine with no problems. You should be okay.

  • denise-stogdill

    Member
    May 30, 2023 at 5:05 pm in reply to: How to relax with severe breathlessness?

    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 exercises when you get out of breath and it would also help you exercise so that you can maintain some strength in your body.  You will be in my prayers.  Remember we are WARRIORS and need to do the best we can for ourselves.  There aren’t many people out there that will advocate for us.  Hugs to you!

     

     

  • denise-stogdill

    Member
    May 11, 2023 at 8:58 pm in reply to: New Diagnosis of IPF

    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 your stats.  Don’t give up and don’t let them wear you down!  Get out your phone and a list of pulmonologist and go down the list.  Get second opinions until you find your doctor but do it quick.  I think we all agree, your stats are troublesome and you need attention and oxygen now.  You have to be a warrior🫁.  God bless…🙏

  • denise-stogdill

    Member
    March 1, 2023 at 9:58 am in reply to: Lung Biopsy

    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 important because my treatment plan became totally different.  I do not have any other organ issues like yourself.  The first three days after I was in so much pain there was no pain medicine that could level it off.  They gave me too much pain medicine and my blood pressure dropped to the point that I coded.  After the third day, I felt like the pain was manageable.  Get a second opinion if you can.

  • denise-stogdill

    Member
    December 22, 2022 at 9:38 pm in reply to: Hiatus Hernia

    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 for close to 2 years.  My third pulmonologist did a lung biopsy this  year and determined that I have ILD with associated RA.  What this means is that my fibrosis is neither caused by my RA or my Gerd.  At this point, my hiatal hernia has not been an issue.  However, as a preventative I take Omeprazole in the morning and famotidine at night.  I’ve changed my diet completely in the last two years and that has kept my stomach issues at bay.  So in my case, the hernia nor the Gerd affected my fibrosis.  Good luck to you in your journey!

  • denise-stogdill

    Member
    December 21, 2022 at 2:56 pm in reply to: Saw PF on xray now what

    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 dr about it it and he says I He says it can be inflammation or I can be reacting to something in the air (change in temperature or allergens).  I don’t do anything when this happens but I have heard of people doing albuterol inhalers.

    Regarding the boosters, I know there’s a lot of controversy out there over whether they’re good for you or not.  Through the recommendation of both my pulmonologist and rheumatologist I have had all COVID vaccines and all other vaccines, i.e., pneumonia, shingles, etc.  So far, my last CT which was done about a month ago showed no progression of the IPF.  I didn’t have any issues with the vaccines either. While taking the vaccines is a personal choice, I took my drs advice and went with it.  With this disease, we need to do as much as we can to prevent infection or chest colds or anything else that can put us onto a spiral of exacerbation.  Just food for thought!  You’re a warrior!  Good luck on your journey.  God Bless….

  • denise-stogdill

    Member
    December 20, 2022 at 10:57 pm in reply to: Rituxamab Infusion Treatment

    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!

  • denise-stogdill

    Member
    September 14, 2022 at 8:47 am in reply to: No symptoms

    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 grateful ????????????????????????

  • denise-stogdill

    Member
    September 14, 2022 at 8:47 am in reply to: Glenda Rouland ♥️

    RIP WARRIOR????????????????????????????

  • denise-stogdill

    Member
    September 6, 2022 at 4:15 pm in reply to: Diet, alternative treatments/ healing

    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 vitamins C, zinc, E and D.  I’ve since lost 85 lbs and I go to respiratory rehab and exercise on elliptical at home and free weights.  I take Ofev and Mycophenalate as well as other meds for Gerd.  I’m on oxygen for exertion only at 3lpm’s.  As I’ve come along, my body was processing my oxygen more efficiently.  However, 3 months ago I got COVID for the first time and took a small hit with my lungs.  My capacity went down around 4% and I was very disappointed! I am 64 years young and I would like to think that my progression would stay the same and not decrease.  However, I continue doing what I do and more importantly keep moving.  Everything you do will help with this disease.  Even if your stats don’t show it but your lungs will feel it.  My doctor and I agree that living this lifestyle will help slowdown the progression of this disease!  Good luck to you, keep moving and hydrate!????????

  • denise-stogdill

    Member
    August 3, 2022 at 8:38 am in reply to: Sleeping with head elevated

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

  • denise-stogdill

    Member
    June 29, 2022 at 9:12 am in reply to: Self-care: What’s Your “Happy Place”

    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 they go in and out, the smell of the beach and just staring out to the vastness of the ocean.  It’s such a mystery and it just brings me an overall feeling of peacefulness and tranquility.   I now find it even more therapeutic than before.

  • denise-stogdill

    Member
    June 14, 2022 at 5:48 pm in reply to: Top 4 Words You’d Use to Describe IPF

    UNFAIR, EXERTING, TROUBLESOME, EXASPERATING

  • denise-stogdill

    Member
    March 15, 2022 at 5:45 pm in reply to: What Do You Consider a “Good Day” With IPF?

    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 good day for me is when I can meet my friends for lunch or dinner.  I try to dwell on the good days and not the bad.  However, when I think about the bad I give myself permission to do so and I put a time limit on how long I’m going to allow myself to stay in a bad place. I’ve seen both of my parents pass, one with COPD and the other with Alzheimer’s.  At the end of their life’s, they were given morphine to keep them comfortable as their bodies slowly shut down.  This is how I imagine my end days are going to be and I’m ok with that.  They died a quiet death and maintained their dignity!  There was no suffocation, no duress as they lay accompanied by their loved ones.  Just a sound sleep as they went to be with God.

  • denise-stogdill

    Member
    March 8, 2022 at 8:20 pm in reply to: Household Chores & IPF!

    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 terribly dirty.  I can’t clean the shower or the tub anymore.  I can’t use the cleaners because they bother me.  It’s hard for me to load the dryer since I have to bend to do it.  I realize now how much I took for granted all of the things I use to be able to do.  Now everything is a big production and most of the time, for this very reason, I don’t want to do anything.

  • denise-stogdill

    Member
    February 8, 2022 at 5:00 pm in reply to: Tony Winter ♥️

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

  • denise-stogdill

    Member
    February 4, 2022 at 6:04 pm in reply to: Blood pressure

    Yes Mack.  Mine has and I’m having to now take blood pressure medicine!  Historically, I’ve always had low blood pressure.  Last year, I was diagnosed with NSIP and Bronchiectasis.  At the same time, I was diagnosed with HBP. I was 63 years old.  The hits just keep on coming!

  • denise-stogdill

    Member
    January 27, 2022 at 5:04 pm in reply to: Esbriet – Insurance approval

    Thank you Wanda and Marianne for your information.  I’m currently speaking with Genentech about the programs available.

     

  • denise-stogdill

    Member
    March 21, 2023 at 8:38 pm in reply to: Lung Biopsy

    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 have idiopathic pulmonary fibrosis, they treat the fibrosis with anti fibrotics.  The other type does not require you take anti fibrotics like Ofev or Esbriet.  I was originally diagnosed NSIP, they did the lung biopsy and the pathogen identified my fibrosis as IPF.  They were treating me incorrectly.

  • denise-stogdill

    Member
    November 16, 2022 at 8:35 am in reply to: New Zoom meeting – taking the bull by the horn

    I’d love to be on the next call.

  • denise-stogdill

    Member
    June 14, 2022 at 5:46 pm in reply to: Top 4 Words You’d Use to Describe IPF

    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 this helps you.  God Bless????!

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

  • denise-stogdill

    Member
    April 2, 2022 at 5:14 am in reply to: Esbriet – Insurance approval

    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!

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