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    • #32076
      Amy
      Participant

      Hello everyone, my mother has IPF for about 7 years. She found out after having a chest X-ray then diagnosed s/p a VATS procedure. She has been taking Esbriet for years and now uses oxygen intermittently even though her lung tests are poor. 2 things have brought me specific concerns and wonder if other share or have info. 1. Is the Telomere protein on DNA which is showing a strong connection to premature greying ( both my my and I had) and risk for IPF.2. In the last 3or so months she has developed a thick mucous cough as opposed to the common dry cough. The development of bronchiectasis which may be the cause and what I have read may be causing fibrosis in bronchioles as well. Thank you all for any input! You are truly warriors!

    • #32077
      Tonya Worley
      Participant

      Wow, I ask myself the same question so I don’t have any answer but I too have gone from a dry cough to a thick plug of mucus that takes me a minute or so of coughing in efforts to get it up.  I begin to panic when I can’t get it up but so far within at most 2 minutes, I can get it up or situated wherein it doesn’t bother me.  It’s not so much infection looking its cloudy pale translucent color but it’s so thick that it doesn’t feel wet really.  It feels like a blob of that slim stuff children play with.  sometimes is a string of it vs. the blob and I have to pull it out and I can feel it down in my trachea.  Normally I find myself uncomfortable describing this to anyone, even medical professionals but I am curious what it means if anything with PF progression and I think you are wanting answers too?  Maybe someone will respond that can shed some light on this.

      • #32080
        elizabeth martin
        Participant

        I, too, have started to have thick plugs of mucous. I usually spend a good bit of time in the morning coughing up the crap. I cannot imagine what it is like for someone who is frail and who does not have the ability to do deep coughing. I have an appointment with my pulmonologist next week and I’m sure she will say that this is the normal progression. It’s still very scary!

      • #32170
        Elle
        Participant

        Wow I am happy that you guys can cough up the mucus. When I only had scarring on my left lung, yes I was able to cough up mucus. But it’s been like a year now that I have a very strong dry hacking cough that feels like I have two souls inside of me. And it hurts really bad because, I will cough for hours and hours. I also have now developed sort of an insomnia because of pain allover in my joints and my lungs feel like I got stabbed. I gave up trying to cough it up because nothing comes up. Could it be because I have scarring on both lungs?

        • #32176
          Regina Bolyard
          Participant

          Both of my lungs are scarred about equally. My cough is more productive early in the day. By late afternoon I usually have a dry barking cough with little to no mucus. I also experience stabbing pains. Having bronchiectasis (which I do), causes more mucus production. I also have asthmatic symptoms along with the IPF. My airways become inflamed when triggered by irritants. I don’t know if this contributes to mucus production though. And I don’t know how this compares with those who have only a dry cough.

          I feel for you.

        • #32177
          Elle
          Participant

          You see before I developed Pulmonary Fibrosis, I had a bit of mucus . so I ended up in the hospital and found out , I had pneumonia. Which like, I have mentioned my doctor never told me anything. So for 2 years , I was left ion the dark of this terminal illness. But for me I do not have any mucus whatsoever and the pain is excruciating and every week I have a new symptom if that;s okay to call it that I drink at least almost two gallons of water and I a a Vegetarian. I am feeling very weak and I rarely get out of bed and I get a fever a lot. And now whenever I get these flareups or “cough attacks,” I feel so much pain almost as if someone is jabbing me. I know everyone has a different experience with this.But for me what helped was prescribed cough syrup and pain meds. Because I do fall a lot. Due to the lack of oxygen that I do not get in my brain, so I faint.

    • #32083
      Tonya Worley
      Participant

      I responded to this, but I decided to make my response a topic instead regarding “Normal Progression” in a topic I will call “Is Normal Progression a convenient answer or a Copt-out for the IPF/PF Patient?”  so maybe it will bring on converation about this overused response we get from our doctors.

    • #32084
      Regina Bolyard
      Participant

      Hi Amy,

      My cough also started out dry….about 20 years ago. I was diagnosed with IPF after VATS and MDD about two years ago. I have traction bronchiectasis too, and my cough has gotten more productive as time passes. I have found that staying very well hydrated keeps sticky plugs from developing. Maybe drinking more water and avoiding things with a diuretic effect could help your mother. Unfortunately, some of the medications IPF patients take tend to cause dryness. Extra fluids compensate for that, in my experience.

      I’m also interested to know if telomere length correlates with IPF. I haven’t heard anything to confirm or refute that. Hopefully someone else will have heard or read something. Much more research needs to be done.

      • #32099
        Christie Patient
        Moderator

        That’s great advice Regina. Staying hydrated and making sure you have enough electrolytes could help thin out the mucous. Gargling with salt water in the mornings might also be helpful to break up the nasty stuff.

        As for the telomeres, there is some evidence linking shortened length to genetic/familial PF. 23AndMe is doing an ongoing study. This was an opt-in clinical study when people did ancestry testing through the company. I’m looking forward to their findings but not sure when they’ll be released.

      • #32108
        Amy
        Participant

        Thank you for sharing! There are some articles about the telomere connection. But even the article suggests needing more investigation.

      • #32173
        Amy
        Participant

        I have encouraged my mom to drink more water but she so stubborn and has never been a water drinker ( she likes Diet Coke). She said it helps when she puts on her oxygen when she has a coughing spell. Also she started using  a  CPAP at night. She is not sure if it helps her overall symptoms but it’s only been a short time. She also has had post nasal drip and congestion. She recently was seen by an ENT MD who prescribed her a nasal spray to start. Not sure if those symptoms are related to IPF. We’ll see, I just want her not to suffer.

    • #32085
      Phil Ryan
      Participant

      I’ve been diagnosed with IPF and Pulmonary Hypertension for at least the last two years.  I also have a thick mucus cough, with usually must pronounced after my doses of Esbriet and Tyvaso.  Never did have a dry cough.

       

    • #32096
      Judy Fraser
      Participant

      I too have the thick mucous. My doc says that’s not typical of IPF, but I sure have seen lots of comments in the forums from other people suffering the same disgusting symptom.

      I would LOVE to find something to stop this annoying coughing.

    • #32140
      Marianne
      Participant

      Hi all –

      I have IPF – diagnosed in May 2019.  Taking OFEV.  In 2021 – I had 3 episodes when coughing up thick foamy mucous.  Pulmonologist prescribed steroids.  He said it was a slight flare up.

      Hope this helps.  I usually have a dry unproductive cough.  I also have GERD.

       

      Marianne

    • #32202
      Ann Chafin
      Participant

      I am new to this forum but already find the comments helpful.  I,  too, deal with thick globs of mucus, especially in the mornings.  I have been on supplemental oxygen for 2-3 months now and have an annoying problem: constantly runny nose when on the oxygen.  Is anyone else plagued with this?  It’s really an annoyance with the oxygen hose on face!!

      • #32208
        Amy
        Participant

        welcome! I’m a nurse and understand that oxygen is drying. However your comment is relatable to my moms symptoms. She is prescribed a spray nasal decongestant from an ENT and thinks it is helping ( it’s only been about a week). Plus she started CPAP at night and I witnessed her having less coughing with the thick sputum.. we’ll see given the good and bad days with IPF. I hope this helps as possible options.

        • #32211
          Tonya Worley
          Participant

          Amy, could you as a nurse explain what your mom’s experience with IPF has been like for us that really have no idea what to expect and fortunately I haven’t experienced too much bad at least I have been able to deal with it so far i.e. the changes in my health since diagnosis.

      • #32209
        Judy Fraser
        Participant

        My doctor prescribed iprapromium bromide nasal spray for the nasal dripping. It helps immensely.

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