Log In or Register to Join The Conversation!
Viewing 8 reply threads
  • Author
    Posts
    • #19493

      Living with idiopathic pulmonary fibrosis (IPF) is an ongoing learning process. Unfortunately what I mean by this is: symptoms will appear and dissipate seemingly at random and it is difficult for patients to know which of these symptoms are caused by IPF or some other ailment. There seems to be many unknown side effects or physical issues that arise as a result of this disease, or maybe they are as a result of the anti-fibrotic medications patients take to manage IPF.

      It has been my experience that anything I notice that is abnormal for me, or is different from something my peers might experience, I suspect its because of my life-threatening lung disease. Do you find yourself quick to “blame” IPF, or attribute an abnormal symptom you experience to this disease?

      If you’ve read my previous columns and posts, you’re likely aware that I was very active, physically and socially, before this cruel disease crept into my life. I rarely noticed issues with my body, despite putting it through some gruelling sports like rugby, hockey and swimming. I certainly never noticed aches and pains the way I do now, or breathlessness, a tight chest or sore back muscles from coughing. I also never noticed swelling in my legs and feet, which is something new for me.

      Do you experience this latter symptom as a patient living with IPF/PF?

      Thankfully this usually isn’t something that lasts for me, and after I put my feet up for a little while, the swelling tends to go down. Upon a quick google search, the most common causes of swelling in the legs include: problems with the kidneys, circulation or lymphatic system or the heart. That said, I can’t imagine these serious problems causing a sudden onset of swelling in the legs, but I could be wrong. For now, it is something I will monitor and try to note patterns of when it happens and what helps. At least this way I’ll have data to bring to my physician if I speak to him about it.

      Since our forum members are so helpful, I thought I’d start by asking if anyone else has experienced this symptom since being diagnosed with IPF. If you have, and it is unrelated to a known heart condition, please let me know.

      Charlene.

    • #19502
      Marianne
      Participant

      Charlene –

      I have had swelling in my ankles and lower legs.  It comes and goes.  I notice it when I wear short socks in my athletic shoes.  I mentioned this to my pulmonary doctor awhile ago.  He looked at my ankles and agreed they were swollen.  Right now they are good.  This was before I was diagnosed with IPF.

      Marianne

      • #19509

        Hi Marianne,

        Thanks so much for getting back to me on this topic, and sharing your experience. I anticipate this is one many folks probably can relate to, so I am glad to hear from you. Did your doctor suggest anything or any further monitoring when he agreed about the swelling? Glad they are better now and hopefully aren’t causing you any pain.

        Charlene.

    • #19507
      Susan W Lyon
      Participant

       

      Hi Charlene and all,

      Every time I see her, my pulmonologist checks my lower legs and ankles for swelling because it’s a sign of pulmonary hypertension, a serious complication of interstitial lung disease. But the swelling can also be caused by lots of other things. For sure, your doc needs to be aware of it.

      Susan

      • #19510

        Hi Susan,

        Thanks for getting back to me on this topic and sharing your thoughts. I’m really glad your pulmonary doc is diligent in checking for swelling, good on her for doing that! Is there anything she has told you to do if you notice the swelling, or anything proactive that she says might address it? Thanks in advance for your reply when you can…
        Charlene.

      • #19524
        Marianne
        Participant

        Charlene –

        No doctor just looked at them.  Did not suggest any remedy.  Have not had swelling since when I have been at doctor.  Marianne

        • #19561

          Thanks for getting back to me on this Marianne! I appreciate it 🙂

    • #19522

      I have PF and I have this going on right now. It’s happened before but usually goes away after a day or two. This time it’s lasting longer. It’s been more than two weeks now. Mainly in my right ankle, but also present less severely in the left ankle. It’s always better in the morning but soon gets swollen after I’m up and about.  Sending a message to my pulmonologist tomorrow to see what I should do. He also has always checked my ankles when I’m at an appointment but it has never been s problem when I’m there.

      • #19562

        Hi Karen,

        Thank you for getting in touch regarding this topic and sharing a bit about your experience. Unfortunately it looks like it is quite a common one, which does bring me comfort but I wish none of us were experiencing the difficulties of PF. Like you, I’ve had this in the past, especially after long days on my feet but with brief periods of rest it gets better quickly but not any longer. It’s lasting this time, and more frequent I am noticing. I’m really glad you’re connecting with your pulmonologist about it. If you think of it, do you mind reporting back to let me know what he says?

        Kind regards,
        Charlene.

    • #19540
      Susan W Lyon
      Participant

      Hi Charlene and all,

      Yes, my pulmonologist did respond. Once earlier this year, my ankles were swollen, plus my heart rate was elevated (90s) and I was coughing more. She ordered a CT with contrast (to rule out pulmonary embolism), blood and sputum cultures, a course of antibiotics, and a course of prednisone. All tests were negative, the swelling diminished, and I felt a bit better, perhaps because of the prednisone.

      So, apparently, the swelling etc. can be a sign of something serious or nothing much at all, but is worth getting checked out. Hope this helps.

    • #19563

      Hi Susan,

      Thanks so much for getting back to me – wow re: the stuff your doctor ordered as a precaution! Sounds like she is very proactive, which is good when it comes to something as serious as potentially having an pulmonary embolism. I’m really glad the side effect has diminished, and prednisone can do us wonders can’t it? That said, I am not a fan of the side effects it brings me 😉

      Thanks for your reminder re: the importance of getting things checked out. Very important! I think I will follow up and do this just in case.

      Kind regards,
      Charlene.

    • #19566
      Susan W Lyon
      Participant

      Charlene, yes, she is amazing. I am so very, very lucky to have had excellent and comprehensive Kaiser medical coverage through my and my husband’s jobs, and now from his pension. It’s literally been life-saving for us both.

      Thank you for all you do here.

      Warm regards,

      Susan

    • #19578

      Charlene, my pulmonologist told me to keep my feet elevated as much as possible. He wants me to watch for redness or extreme swelling that doesn’t go down when elevated and get back with him if it doesn’t subside in a few days. Of course he mentioned “salt” intake which I assured him I’m always careful with. He did say to try light compression socks which I bought and they do help. Stay tuned. Let me know how you’re doing.

    • #19580

      Thanks for sharing Karen, I appreciate hearing the thoughts from your pulmonologist! I do that as much as possible too – elevate my feet, and thankfully the swelling reduces with that usually. I’ll keep an eye open on it in terms of how long it takes for the swelling to go down, that is a good reminder to contact the doctor if it doesn’t go away. I am also very cautious about the amount of salt I consume, although I could stand to be a bit better I think. Something to work on … always improving…

      Thanks again for sharing!
      Charlene.

Viewing 8 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2020 All rights reserved.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account