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  • How did you handle the first time your disease got worse?

    Posted by Pamela on May 15, 2023 at 8:19 pm

    Hello Everyone!
    <div>I recently was in the ER because of breathlessness after a long walk (5 miles).  This was a first for me, until recently I was still jogging.  I have Scleroderma- ILD and was diagnosed two years ago, 48 years old.  My fibrosis had been diagnosed as mild for the last two years, but during the ER visit I was told that the CT scan now said mild to “moderate” fibrosis and now I had Bronchiestasis.</div>
    <div>Backstory- I’ve been living in cold weather the last several months for work and was walking/jogging without issue, I came home to humid 80 degree weather, and this is where I landed in the ER.</div>
    <div>I’ve been back two weeks and took a PFT today.  The value that took a nosedive from my last PFT six months ago was the ERV- Expiratory Reserve Volume and the</div>
    <div> FRCpl-  Functional Residual Capacity by plergysmography.  They gave me a nebulizer treatment today and this didn’t change my numbers, so I don’t believe it’s asthma or allergies (not sure though, will ask my Pulmonologists this week when I see her).</div>
    <div>Since I’ve returned home I’ve felt like something has a hold of my lungs and I can’t breath in fully.  I did not feel this way when I was in the cold weather just two weeks ago, it’s like it happened overnight.</div>
    <div>I don’t know anyone else with pulmonary fibrosis so you can imagine this event has left me feeling scared and sad and imagining that the fibrosis has aggressively progressed in the last six months.  I am supposed to get married in four months but instead of thinking about wedding dresses I’m thinking about wills..</div>
    <div><span style=”font-family: -apple-system-body;”>Does anyone have any advice on how they handled that first time when things took a turn for the worse?  Was it related to the fibrosis advancing, or what I’ve heard of as an “exacerbation” (what is that exactly)? </span></div>
    <div><span style=”font-family: -apple-system-body;”> </span></div>
    <div><span style=”font-family: -apple-system-body;”>Did things get better after a few weeks or months, or stay stable?  Did your breathing abilities ever get better, did your numbers go back up?</span></div>
    <div><span style=”font-family: -apple-system-body;”>If things did in fact get worse, how did you accept that and keep living your best life? </span></div>
    <div><span style=”font-family: -apple-system-body;”> </span></div>
    <div><span style=”font-family: -apple-system-body;”>Thank you in advance for your wisdom!  </span></div>

    Pamela replied 1 year ago 3 Members · 4 Replies
  • 4 Replies
  • Karen Martin

    May 16, 2023 at 4:58 pm

    Pamela, I can’t speak to your scleroderma, but humidity does a number on most everyone who has breathing issues.  I stay inside to avoid it!  An exacerbation is any situation that causes you to have trouble with your O2 levels.  I had pneumonia in September that sent me to the hospital and it took a while afterwards to get back to “normal.”  You may need to make some adjustments to your treatment plan, but since you will see your doctor soon, she will be the one to make the call on that.  Don’t hold back on your feelings about this!!  The doctors are there to help you.  She needs to hear what you are feeling and what you are dealing with.  In the meantime, keep dreaming about wedding dresses and the future with your loving fiance.  Looking forward with hope is the best thing for all of us.  Best wishes to you.

    • Pamela

      May 18, 2023 at 11:04 am

      Thank you Karen God bless you for your kind words.

  • Christine McCann

    May 18, 2023 at 3:33 pm

    That this condition by definition will get worse is a given. IPF, COPD, Emphysema, and as far as I know any lung disease is progressive. You can keep it from rapid progression with medication. Have a frank and honest/discussion with your Pulmonologist so to be upfront with your Fiance. People have lived 11 + years with PF/IPF etc. you can find ways to cope, don’t give up.

  • Vince Stravino

    May 22, 2023 at 9:08 am

    When my FEV and DCLO dropped I panicked but then I had a course of pulmonary rehab and my physical and mental status both improved. I also got checked for sleep apnea and now sleep and awaken better. I felt better sharing and listening to others in the support groups(I am in four!) After my scare I also sought meds from my family doc for anxiety and depression which helped. I continued my retired life as always but I skip the hills and I move at my comfortable pace. Adjusting my schedule helped too. I save my energy for the truly important things in my life and I enjoy/lean on my friends to keep my mind busy. Pam, take heart and learn as much as you can about your condition. I felt better after a second opinion at a regional IPF/ILD center. Forget the dark prognosis that pops up when you Google IPF. That data is old.I zoom often with a friend in PF Warriors who has Rheum.Arthritis and IPF for NINE years !! My pulmonologist told me that having a secondary cause as you do (scleroderma,Rheumatoid Arthritis, or one of the many allergens,birds, etc.)often has a better outcome when the secondary autoimmune disease is treated. There are exciting treatments and drugs coming over the horizon! In my long medical lifetime I’ve seen awful prognoses disappear for polio, tuberculosis, HIV, and Covid. I make an effort to count my blessings. I also focus on living the fullest TODAY. Best wishes to you as we trudge the road to happy destiny together.

  • Pamela

    May 23, 2023 at 5:45 pm

    Thank you Christine and Vince! I appreciate the kind words. Vince I like your idea about seeking out the PF Warriors and should be at a meeting this month. I could probably use some anxiety meds, I’m assuming this is ok even if I am on Ofev and Cellcept.

    Question for you all, how does IPF or ILD actually “feel” to you? I feel something akin to an ache on the left side of my sternum most days, and an ache under my ribs. It feels very heavy. When I try to breath in deep, I hear something that sounds like a wheeze or like if you rubbed the exterior of a balloon.. very strange sound.

    Another question – do you find it easier to breathe in cold or warm air? I was in Germany for a couple of months in 30-55 degree weather, had no issues here, but this first exacerbation happened when I got back to Texas a few weeks ago with its 80 degree weather. I’ve heard the cold is bad for IPF/ILD and especially Scleroderma, but in my case it seems the cold was easier to live in. Can anyone share their experience here?

    Thanks to you all for your insight and wisdom, I am grateful to have this forum to ask questions and share perspectives.

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