• Robert Morrison posted an update 3 years, 7 months ago

    @charlene-marshall Related to the desire for normalcy you touched on something that just caught me about a month and a half ago. You and I were diagnosed as having IPF in 2016. And I am now quite sure I had an exacerbation that surfaced in late Feb – early Mar. I cannot be sure as I spend my winters in Florida, without a pulmonologist, and won’t be back in the Chicago suburbs until next week. I will be undertaking testing to see where I am at. In the meantime I am on oxygen 24/7, 3 ltr at rest, 4 ltr when moving. My trek from the bed to the coffee pot and back into bed has made me sure something happened almost two months ago. After sleeping at night with oxygen my first reading in bed is usually 95 or 96. Prior to two months ago getting coffee and crawling back to the bed, with one set of stairs, my sats would drop to around 88 +/- 1. Now, at the condo my number drops to the low 70s, even without stairs. Something happened two months ago. But I digress…in a recent normalcy article you wrote this:
    Maintaining sterile access points: I have a port-a-cath in my chest, just below my collarbone, that needs to remain sterile when it’s being accessed. Following an exacerbation of my IPF in May 2017, I also received a PICC line. Knowing that these devices provide direct acc….
    I am interested in what the new ports are all about and whether I might be missing out on something. My pulmonologist in Chicago talks only about Ofev and Esbriet and when I brought up the change I experienced a while ago his only comment was to get me in a lung transplant program. Does your chest port and pick line relate to your IPF? I am in the deep part of “I’m scared” reeling from the speed in which it is all taking place. Any guidance would be greatly appreciated from you and any other people in similar situations. Bless you all.
    Robert Morrison

    • Hi @rjmo3comcast-net (Robert),

      Thanks so much for writing to me, and sharing a bit about your story. Yes indeed, it looks like we were diagnosed with having IPF just within a few weeks of another. I’ll never forget April 7 2016! I’m really sorry to hear of your suspected exacerbation, they are scary and mine in May of 2017 left me fearful of this ever happening again. Did your oxygen needs increase after the event you’re thinking may have been an exacerbation? My 02 requirements increased ten-fold when this happened, and even worse, my left lung collapsed entirely so I was intubated, requiring full ventilation to breathe. It was awful. Usually an exacerbation is triggered by something like a virus, infection or a spike in weather temperature or allergens in the air. I’m not a physician though, so I suspect they may happen randomly as well, I can’t be certain.

      Regarding my quote in the article I wrote about normalcy, I still do have my port-a-cath which is a permanent device placed in my chest to allow easier access for blood draws and medication administration. This isn’t common practice among IPF patients I don’t think (again, it could be) but my veins are really bad and hard to access due to them collapsing or rolling away. This is why I had the port-a-cath inserted, for easier access to my veins. It wasn’t required, just suggested and then ultimately the decision was up to me. Usually the nurses don’t leave it accessed and so the device placed under my skin doesn’t require any care. It’s just went the tubing is accessed that it needs to remain sterile and this usually happens when I have nighttime medications that might need to be administered. Unfortunately, my heart has also suffered some damage from how hard it is working as a result of IPF, and I had an acute kidney injury (AKI) after my exacerbation in May 2017 as well, which was caused by a bad virus. I no longer have my PICC line, sorry I didn’t make that clear in my post. It was for access as well while in the ICU recovering from my exacerbation, they needed so many access points because I was so sick. Does this help clarify why I have these? I do have to be careful from the hole the PICC line left in my arm as it still hasn’t fully healed yet so I am cautious when swimming, etc. and usually cover it just in case. Let me know if this answers your questions, I don’t think the two access points I have/had (port and PICC, respectively) are common for IPF patients. I had a systemic response to my lung collapsing, which meant all my other organs needed medications too so that is why the ICU needed to have so much access.

      Feel free to write anytime and I hope this helps!
      Warm regards,

      • Hi Charlene – Yes your response clears up my confusions and concerns and I thank you very much. Yes I am on higher deliveries of O2 and quite honestly now I wear my oxygen tubes whenever I can. I used to not use it until my sats dropped below 90. Now I wear it a lot and feel better for doing so. I am returning to the Midwest US next week and doing the full lung function test shortly after arrival. I am hopeful that will shed some light on what happened two months ago. You know it’s interesting that while I read your columns and others writing about IPF faithfully I never felt I really belonged in the IPF group. I was diagnosed as having it but until the event two months ago I didn’t fit the profile I was reading about. I did not have a cough, I did not lose any weight (unfortunately), and no clubbing of the finger tips. I had shortness of breath, but who doesn’t? In the place where I am now I know I have the disease. Now when I read your writing instead of feeling like I am reading about some general concepts, I feel like you are writing (talking) to me. So I thank you very much about becoming a very important part of my support. You’re the best and I look forward to staying in touch as long as I am able. Bless you Charlene; you do make a difference in people’s lives.
        Warm regards,
        Robert Morrison

        • Hi Robert,

          Thanks so much for you reply, I am really glad my response helped a little bit 🙂

          I am similar to you, and although I used to hate wearing my oxygen, now I can tell a big difference in how I feel overall when I am wearing it so my preference is indeed to have it on. Like you, I feel better when I do. I hope your return to the midwest US goes well, and that the lung function provides some clarity for you in terms of what may have happened a few months ago. Give as much detail to the physician as possible, as I know exacerbations are hard to determine if not in the moment but likely they will be able to explain more about what might have happened… do keep us posted, if you don’t mind? I think everyone needs to understand a bit more about exacerbations! They are really scary and potentially detrimental so I hope to highlight this more in future posts/writings.

          Thank you so much for your kind words about my columns, although I wish you were still in the place of feeling well and not experiencing many of the side effects I am writing about. I am so glad you’ve found the PF forums and are part of our online community! Please feel free to write any time, and I look forward to staying in touch as well. Safe travels home my friend, and wishing you nothing but the best.


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