• regina-bolyard

    Member
    August 7, 2020 at 5:32 pm

    @pbesio ,

    My biopsy was pretty uneventful too. The chest tube grossed out my kids, and I had fun with that ?. But honestly, didn’t even feel it. Pain afterward was far less than I had been led to expect. I had surgery at noon on Wednesday and was discharged at 10 a.m. on Friday. The worst part of the experience was the hospital bed. I couldn’t wait to go home.

    I had put mine off for about 5 months, but it was to get a referral to a PF specialty clinic listed in the PFF Care Centers. I have no regrets.

  • jross

    Member
    August 7, 2020 at 6:07 pm

    Losing power is is in all cases a hardship and  can even be hazardous for many. We made out a lot better than most. A majority of those who lost power in our state will have to wait until sometime  this weekend for its restoration. Some will have to wait until Tuesday! Although I have a concentrator, I have improved so that I use it only to connect to my CPAP machine nightly. I dislike using the CPAP, so if anything I enjoyed 2 nights of freedom. I do try to walk most days with a rollator and attached oxygen tank, but I couldn’t get into our garage to access that. We’re almost getting use to power outages now: we lost power a couple of times this spring (50 year old transformers quit) and in late fall a couple of years ago. Speaking from experience, losing power in cold weather is far worse–we had to find a motel room when few were available.

    Charlene–the U of Fla information was from Pete Besio’s 8/4 post above–a quote from their website

    John R

  • Charlene Marshall

    Member
    August 8, 2020 at 9:46 am

    You’re most welcome Karen ( @casey ) … glad you found it helpful! This is always something worth reviewing! Actually, I think I might write a column on it with the tips that I find helpful in proactively preparing for an emergency. I’ve learnt along the way, and sharing information is really important 🙂 Stay tuned!
    Char.

  • Charlene Marshall

    Member
    August 8, 2020 at 9:49 am

    Hi John,

    Thanks so much for sharing! Yes, power outages can be really scary for those of us living with IPF and oxygen. Glad you managed okay. I can’t imagine waiting that long for power restoration! Aside from needing oxygen, it is really hot here right now I bet people without power are struggling with the heat too. What wild weather the US eastern sea board had last week!

     

    Thanks for the link to the U of Fla. post, I’d totally forgot Pete posted about it. He’s emailed me with the information as well. Thanks again and be well 🙂
    Char.

  • karen-martin

    Member
    August 8, 2020 at 10:32 am

    I think doing a post about preparedness for power outages would be great. I don’t think a lot of us give it much thought until we find ourselves in that position the first time. Even then, we don’t necessarily give it enough thought. Since I am a list-maker at heart, having something concrete to work from would be a big help to me. I can tell you that when you are wearing a CPAP and the power goes out, you will NOT sleep through it!

  • mark-koziol

    Member
    August 8, 2020 at 6:41 pm

    Hello Karen, I like the idea. I will do some research this weekend and make this my forum topic on Tuesday. Have a great day. Mark

  • Charlene Marshall

    Member
    August 9, 2020 at 10:31 am

    Sounds good Karen, I am going to make this my column for the week — stay tuned for it on Thursday! 🙂

    I’ll try to add some practical tips/things for people to think about proactively, as you’re right, we so often don’t think about these things until we have to.

    Take care,
    Char.

  • onlyjude

    Member
    August 12, 2020 at 1:28 am

    Hello everyone! I’m a newbie who is SO grateful to have discovered this forum.

    My VATS was in April. Hospitalized for 5 days during Covid protocols. The procedure itself was unremarkable and not very painful. Went in not being on O2 at all, and could not release me unless I agreed to go home on it. My suspicion is that probably I was “low” quite often beforehand, but was not monitoring pulse/ox then. Tissue from the biopsy was sent for a second review and came back as possible Idiopathic PF. To not have a conclusive diagnosis after over 2 years of all the testing AND a VATS is frustrating. I’m seeking another opinion at an out of town pulmonary clinic in September. Is this typical of others experience?

  • Charlene Marshall

    Member
    August 12, 2020 at 9:51 am

    Hi Jude,

    Thanks so much for writing and welcome! I wish none of us had to be here as a result of having this cruel disease, but I am glad you’re finding this forum helpful. We’re truly better when we help each other!

    So sorry to hear that despite everything, the biopsy and testing still came back inconclusive. Unfortunately, yes this is typical of a lot of others’ experiences. Can anyone speak to this specifically and whether a second opinion helped with your IPF/PF diagnosis? I personally didn’t have a biopsy but I learnt in hindsight that they “suspected IPF” for a number of months before I was diagnosed, because they were looking for something else due to my age at the time.

    I am glad the procedure was uneventful though, but sorry the results weren’t conclusive. Hang in there, and please feel free to write any time! I’m sure others will share any similar experiences with you as soon as they can.

    Take care,
    Char.

  • karen-martin

    Member
    August 12, 2020 at 10:29 am

    Thanks Mark and Charlene. I will be eagerly awaiting the info you provide. This is a great forum and there is such diversity that I always am eager to read what is new. Thanks for all the hard work you do on our behalf!

  • Charlene Marshall

    Member
    August 12, 2020 at 10:50 am

    Our pleasure @casey , truly! 🙂
    I submitted a column on this topic for my publication date of tomorrow. I’ll try to remember to send you the direct URL, but it will be posted on our PF News homepage as of tomorrow (Thurs) morning! Glad you’re finding the forum helpful, thanks for being part of this special community.

    Char.

  • pete-besio

    Member
    August 14, 2020 at 4:02 pm

    @onlyjude

    Hi Jude,

    I had my biopsy Nov 2019, this was the last procedure needed to classify the PF as Idiopathic, and the results supported an IPF diagnosis.  Love my pulmonologist and think he has done a great job diagnosing me.  His suggestion was that I consult with a University Medical center for further evaluation and to see if a clinical trial might be available for me to join.  My research into clinical trials led me to this site: https://www.clinicaltrials.gov/  .  This is a great resource, as it contains all clinical trials currently underway.  I searched for IPF trials that were enrolling new patients, found 10.  A clinic near me is participating in a trial.  I contacted them, based on the phone conversation they thought I was a good candidate, so I made an appointment.  The screening process for the trial includes a full suite of tests: spirometry, blood work, high res CT scan, 6 minute walk test.  Also included consultation with two pulmonolgists that reviewed my full medical records.  The study also will review my biopsy slides.  All this to determine if I am eligible to participate.  OH….and FREE!  An extremely detailed second opinion, and I highly recommend it.

    Once I know the determination of my participation of my participation, it is my intent to schedule an evaluation at the University of Florida Medical Center, which appears to have a knowledgeable PF group.

    Neither Esbriet nor OFEV sound like much fun to take, my plan is to be absolutely certain that I need to!

    And lastly, if I have been diagnosed with a fatal disease, I don’t think there is such a thing as too many opinions.

    Good Luck!

  • Charlene Marshall

    Member
    August 15, 2020 at 12:55 pm

    @pbesio

    Hi Pete,

     

    So nice to hear from you!
    Yes, the clinicaltrials.gov website you mentioned is an excellent one – something everyone should know about! I am on there often as I do research, and always use it to keep abreast of clinical trials/advances going on in the PF space. It is the most credible site out there, as all the information on it is vetted and verified 🙂

    Kudos to you for being so determined and investigating all the options! I know it can be tiring, but certainly is important. Thanks for writing.

    Char.

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