Pulmonary Fibrosis News Forums Forums Welcome Lounge How to relax with severe breathlessness?

  • Glenn dell

    July 4, 2023 at 9:57 pm

    <p style=”text-align: left;”>Galvin i dont know if your in the states or over seas. But here therr are some teaching hospital that it takes months to see the doctor and then there some teaching hosipat you can get to see  pulmonary specializes in just days. I know because i have experince this. Its imperative that find that hospital  that can see in more timely fashion. Like days and not months</p>

  • Sally

    July 5, 2023 at 8:27 am

    My two cents……..

    If your oxygen is “down to 88-92″…do not worry.  You only need to worry if it is below 88.  I am sure that causes anxiety when you think it’s too low and you can’t breathe.

    If it gets below that when you get up and do something, then it’s a cause for some help.  At night when I take my CPAP off to use the bathroom, mine goes down to mid 70’s and it’s only about 50 steps each way.  However, it goes right back up when I sit/lay down and get connected to my oxygen and CPAP. My Pulmonary says that’s fine if your LPM comes back up in a short time (a minute maybe ?).

    As many have mentioned, you need a walk test to determine if you need oxygen full time and at what LPM. I am at 5LPM or more at any exertion, but only 1-2 when I am sitting.

    Pulmonary Rehab would be great.  They give you oxygen and check your pulse and oxygen levels while you are exercising.  You usually have choice of NuStep machines (I bought one for home use and use it every day for an hour), treadmill or bike…in addition to exercises for your entire body (usually sitting).  It would be great for you.  Medicare or insurance should foot the bill.

    Good luck and hope things get better.  Sit and relax if your oxygen levels decrease or your pulse gets high.  Take some breaths, pulse breathing, calm thoughts…..

  • Patricia Meadows

    July 6, 2023 at 9:54 am

    Gavin, have you looked for pulmonary fibrosis support groups in your area?  I have found being in the company (in person or via Zoom) of others who are living with PF to be extremely helpful.  Plus we usually have a speaker who understands and treats some aspect of PF such as exercise programs, physiotherapy focused on breathing, eating well, etc.  Very best wishes from Calgary, Canada.

  • Patricia Meadows

    July 7, 2023 at 8:08 am

    Hi again, Gavin.

    You might also want to look up https://pulmonaryfibrosistrust.org/ which is the UK organization.  The US site is extremely helpful too:  https://www.pulmonaryfibrosis.org/.

    Best wishes!  – Pat

  • Bruce F.

    February 1, 2024 at 6:05 pm

    Hi folks—I am not a doctor, and do not know if my experience will help to reassure Gavin or others, but I know that when my dad’s pulse ox started falling irretrievably to the point where he became panicky, he was administered benzodiazepines as needed, which seemed to calm him, especially during the nighttime hours. This was In the U.S. about fifteen years ago.

    I agree with the person who advocated that you take a squeaky wheel approach to this. There is no reason why you should suffer any more than available treatment allows. Insist on treatment for your anxiety! Breathing exercises, medicines, meditation exercises: you should have access to everything you need. A support group in your area could help you with local knowledge about what is available.

    Best wishes!

  • Jan OBrien

    February 1, 2024 at 6:18 pm

    Hi Gavin,

    My husband was diagnosed in June of 2023, and is unable to take the OFEV or Esbriet due to side effects. I have COPD and Asthma and our two conditions are making us crazy. We’re with Cleveland Clinic in south FLorida and our pulmonologist is great! I dont know where you are, but if you are close to a Cleveland Clinic, start working on getting a new Dr. Meanwhile, our Dr suggested we get Boost – which is pure Oxygen in small cans that we keep all over the house, in the car and in my purse. We can grab one and take a couple of shots and relieve the fear and stress. I also read on this forum about taking Zinc Picolinate and it seems to be helping. We take 25-30 mg every day. I also take Breztri with is a 3 in 1 inhaler that I get out from Europe. The US price for Breztri is $400 a month and not covered by my insurance but the EU version is $99/month – still expensive, but it helps. My Dr is cool. She sends me the hard copy RX and I scan/email that to the provider and they ship. Are you still working? Maybe you can apply for disability to get the O2 paid for? Just thinking outloud here. ~Jan

  • Petrov

    February 7, 2024 at 5:12 am

    Hey Gavin.

    May I ask what province you live in, if you don’t mind?

  • Meredith

    February 12, 2024 at 8:45 am

    I am 81 years old and have had IPF for 3 years. It is severe and I have access to a good pulmonologist. There are two meds available but they don’t address symptoms. I have had to use supplemental oxygen since the diagnosis

    There is nothing bad about using oxygen you will feel so much better when you are using it. You have to get used to it (the cord) but it doesn’t take long

    You can get a portable concentrator to activities

    You can use oxygen to feel better You can not use oxygen and feel worse and worse.

  • Randy

    February 16, 2024 at 11:52 am

    Morning. Been reading all the postings here this morning and I just have to add. Most of you are so lucky to have the stats that you do. I was diagnoised in 2020 with IPF. At the time, one lung was already shot, so it was taken out, that left me one to operate my whole body. As time has progressed, the disease has gotten worse. For awhile I used an Inogen to get around with. That doesn’t work anymore so went back to the oxygen tanks. MY last lung test wasn’t good. This was in Dec. 2023. i couldn’t complete it due to lack of oxygen. It is now Feb and I am slipping. My lung doc says she is calling it rapid advancing PF. My only lung is showing signs of giving up, I am caughing like crazy, I can’t bend over or I caugh, lose my breath and can’t see. I then have to set till I can see again. My stats range from 62 to 75.

    My lung doc is trying 3 new meds and see if any of them slow the progression down, if not, then it will be liquid oxygen and hospice. So people, enjoy life will you can, you don’t know when it will end.

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