This topic contains 10 replies, has 6 voices, and was last updated by  Brittany Foster 1 year, 2 months ago.

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  • #13065
     Brittany Foster 
    Keymaster

    Lately, I have been in and out of the hospital for awful stomach pain. I thought this was related to the infection I have in my intestines, but turns out I am having trouble with my only remaining ovary and have been deleloping cysts that are more complex than usual.

    The past two times I have been in the hospital and trying to manage the pain, my oxygen levels as well as my ability to take deep breaths has been impacted by the discomfort that I’m in. I am trying to practice deep breathing while in pain and taking necessary pain medications has been allowing me to do this.

    When I have flare ups of pain from other conditions I also notice that I hold my breath more in response to pain and am limiting myself of necessary oxygen. I have been told to put my oxygen up at this time and take my medications so that I can get this pain as under control as possible.

    Has anyone experienced difficulty breathing and lower oxygen levels when they are in pain? What have you been told to do to help with this? Do you have any pain remedies to help manage discomfort? Any advice and tips would be appreciated!

  • #13076
     Joyce Sandberg 
    Participant

    Yes, I too have that experience. Managing it means titrating oxygen ltrs. up it when needed. As for pain killers. I take a 500 mg. Acetaminophen tablet along with 1 claritin before bed. It doesn’t last all night, but I get about 5 or 6 hours of sleep before my hip discomfort kicks in again.
    I had a hip replacement about 10 years ago and the surrounding area is tender and I guess arthritic as well as I am 76 years young. This CTEPH form of PH has good days and bad. Unfortunately my clots are distally located and renders me an unsatisfactory candidate for PTE surgery. So my Adempas, Eliquis and Tudzorra Pressair serve to hopefully keep it from worsening. I should use my treadmill, but find reasons to avoid it. When I do use it, I have to raise my plug in concentrator to 6 or 7 to keep saturated.
    I rely too much on my electric chair at home, it’s easier than going back and forth to my concentrator changing the ltrs. Running over my 50′ tubing and destroying it at times is a problem. Showering, is a real challenge. I recently bought a terri robe so when coming from the shower it awaits me and easier than towels. I sit and wait until my oxygen levels raise again. Arranging all necessary items in advance is a MUST when I shower. Need oxygen in the shower while sitting on a shower bench I wash my hair and use the hand held shower device. My reading glasses and oximeter are nearby with deodorant and underthings and clothing. A real big deal!!! just to shower!!! I guess it could be worse; we have to keep a positive attitude to get through this.

    • #13083
       Brittany Foster 
      Keymaster

      Hi Joyce,
      it helps to stay positive but it also okay to admit when you are having a rough time, which it sounds like some days are a lot harder than others. I’m sorry that it has been hard for you to shower too but it seems like you are trying to make accommodations to make it easier for yourself and that’s a really good thing and shows that you care a lot about your health and what is best for you.

      I understand what it is like to feel pain and have difficulty sleeping and I’m glad that you found a combination of medications to help at least allow you to sleep for a few hours.

      Thank you for your response and I hope you continue to stay positive amidst the difficult days. 🙂

  • #13087
     Amy Peeples 
    Participant

    I do think pain would affect o2 levels. That just makes my heart break even more for the remodulin sub q’ers. I was on that for six months and never once took anything besides a Tylenol for site pain . My sites lasted 10 days at he most .

    • #13097
       Brittany Foster 
      Keymaster

      I know! I can’t even imagine what that must be like to experience pain from sites and from the medication used to treat PH. So terrible! I feel for everyone in that situation.

    • #13118
       Diane Enriquez Chung 
      Participant

      Oh yeah!! I know pain well, unfortunately. I was on Remodulin Sub’q for 8 year!! Yup! 8 years! Pain and I were best friends. ☹️ My Remodulin dose started off low then the doc gradually raised it over the first few years. As the dose got higher, my site pain got worse and worse. The pain was always after the site change (needle change). My site was always on my stomach so the first 3-4 days were the worst pain days. My stomach would get swollen and hot to the touch. The pain meds they gave me were never strong enough but I also didn’t wana take too much pills to the point where I become addicted to them because the pain was constant. So I stopped taking pain pills and just tough it out. It was hard! I would barely move to keep the pain at a minimum. The pain would eventually subside after a week to a week and a half; depending on the site. But during that time I would make sure I’m on my oxygen because the pain made it difficult to breathe normally, at least for me. I’m sure my oxygen levels were always bad during the site changes because it I’m so focused on the pain that I’m not focusing on breathing well. I would catch myself taking shorter breaths in and out when I would feel the sharp pain from my site. So having my oxygen on probably helped me a little bit. Thankfully I was able to transition off of remodulin and onto orenitram (oral pills) because I got too many infections the last few years on it and begged my doc to allow me to try orenitram. It was a successful transition and I am still on orenitram. But I still remember the pain and agony of those site changes. I even have the neddle scarring to remember it by.

      Diane

      • #13120
         Brittany Foster 
        Keymaster

        Hi Diane,
        I’m sorry that you went through all of that ! That must be so hard to even remember that time in your life. Thank you for sharing with us, I know it can be difficult to bring up bad memories especially when it comes to pain. I can understand the impact that it has on your breathing and can relate to what you mentioned about taking short breaths when you are uncomfortable. Especially if the pain is coming from the stomach area. I am usually a stomach breather when I inhale so any pain in that area I just feel like it is harder to use my accessory muscles to breathe and get a good breath in. I definitely crank the oxygen when this happens. Like you, I try as best I can to stay away from pain medication. I would never judge those who have to be on them long term, but for me the side effects really get to me! Thanks again for sharing this with us.

  • #13104
     Chris LaRose Mev 
    Participant

    i take XS Tylenol & Tramadol every 6 hrs.

    • #13107
       Brittany Foster 
      Keymaster

      I used to be on tramdol too. Is that considered a narcotic now? I was taking it so long ago for pain but forget what type of medication it is.

  • #13316
     Jimi Mcintosh 
    Participant

    Pain affects everything, I do, how active I am, eating, sleeping and PSTD. I was informed in June that Walmart will only fill a 7 day order for Percocet, when my doctor
    has prescribed 4 pills per day for 30 days, then Humana (medicare, Medicaid) decided that they will no longer pay for pain meds such as Oxycodone, Percocet, etc., Most of us are struggling to pay for our PAH meds, related supplies and now the insurance companies are practicing medicine, over-ruling our doctors.. I feel for those people that have addictions, but there are real people with terminal illnesses, that have real pain and real needs to deal with pain, breathing, PTSD, and PAH. My state passed laws to allow certain groups of people to be prescribed medical weed, cannot buy it here, and cannot legally order it to be shipped here. PAH was left out of the medical necessary groups.

    Medicare is now requiring new documents for most medical supplies, such as oxygen, CPAP, hose , mask , tanks. Your doctor has to certify your continuing medical needs.
    I had a CPAP hose ruptured and it took over a month to get a replacement. I did not mean to “rant”, but, my plate is over-flowing.

    • #13319
       Brittany Foster 
      Keymaster

      Jimi
      You certainly do have a lot on your plate! It’s hard enough to try to manage these conditions and the pain that we experience, nevermind having to deal with companies that have such strict regulations on how they give them out. I always say that there is a difference between addiction and those who are dependent because of medical conditions to different medications for pain. I understand why there are strict regulations, but it makes those with debilitating pain have to suffer when it’s no fault of our own.

      I hope they can figure this out for you in a timely manner and that the doctors give all the documentation needed. I know it’s another stressor but if you set up everything with your doctor beforehand and let them know of the specific guidelines, you can have that info on hand and ready to give when it’s needed. I’m always trying to be one step ahead when it comes to stuff like that.

      Thinking of you and hoping the best

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