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    • #14527
      Randolph Reynolds
      Participant

      I have more difficulty now with Remodulin in keeping positive. Anxiety develops over things like site pain, replacing the pump, dealing with the tubing, etc. I was wondering how many people are on Remodulin who might chat about this?

      Randy

    • #14533
      Brittany Foster
      Keymaster

      Hi Randy,
      I am not on the pump , but I can relate to your feelings of increasing anxiety when it comes to experiencing pain. I always jump to thoughts of “will this go away? Will this ever get better?” The anxiety for me is because I don’t have a time frame of when this will all get better or when the pain will stop. There’s no control of it. The best thing I would suggest would be to be open with your team about the pain you are experiencing and let them know about how much stress and anxiety it is causing you. They need to help you manage this because pain can truly effect quality of life so much! I can sympathize with how you’re feeling. Although i don’t personally know site pain. I do know what other chronic pains feel like and when it gets hard to manage and becomes too overwhelming. Have your doctors given you any advice? Are you able to take anything to help with pain or even help with the anxiety you’re experiencing?

      • #14607
        Douglas Knuth
        Participant

        Hello Randy. I am on Remodulin sub cutaneous at this time. (Am going to transition soon to Orenitram hopefully) I’ve been on sub cut. for just over 6 years now. Also taking Opsumit as well. But I don’t know how you “carry” your pump etc. I recently bought oneof those pouch belts to hold the pump etc. But while it works soso, I like the way I invented and used for 6 years. I have one of those college neck lanyards that my son gave me, and I place my pump into it like a cradle and then drop the pump and lanyard down into my leather pump case and snap the top down holding the pump the lanyard in place. So my pump hangs from my neck and sits right in the middle of my sternum area. I then take a bread wire tie and attach it to the lanyard and that is how I keep my tubing from getting all over and snagged. As I’m sure you have noticed your tubing comes wrapped in a small circle so I just keep it in a circle and just attach the bread tie to the tubing. That has worked great for me for the 6 years I have done it this way. The belt pouch works, but more of my tubing is exposed, and could get pinched in the zipper.
        As for being positive, I know it’s tough to be positive when your site hurts like hell every time you move! Are you getting good longevity of your sites? I get 6 weeks that could probably go longer sometimes but my doctor doesn’t want me going beyond 6 wks. And sometimes, I need to change my site sooner than 6 due to a bleed, or infection setting in.
        I will keep an eye out for your reply.

        • #14623
          Brittany Foster
          Keymaster

          Thank you for these tips ! I know they will be helpful. I’m glad you have found ways to be creative and even using things you can find around the house to help assist your equipment. Did you figure this out on your own or was this something that was suggested to you?

    • #14537
      Dori Herrick
      Blocked

      @ripple76
      First, PH in itself produces enough stress to affect mental clarity. Depression is also very common. It is a stressful condition, and with a Remodulin pump, you hold your own life in your hands. I do see a therapist when it feels like I don’t have the skills to cope with depression or anxiety. I encourage any patient to do the same.
      I have been on the IV, not sub-q for almost 3 years. I don’t have to deal with the site pain, but with a cental-line there is a very high risk for fatal infection because it leads directly to the heart.
      At first, the responsibility of dealing with Remodulin scared me. One little mistake can be a really bad thing. The key to avoiding mistakes when you are scatter-brained is ROUTINE. Always pack your supplies the same way. Always change your pump the same way. Clean your hands with Purcell between touching anything else and your sterile supplies. Do things so that it becomes a habit.
      You should also have a backup person who can mix your meds if you are unable. When I am really feeling “off”, I have my spouse double check my work, make sure I am measuring right and not missing any steps.
      Over time, you will build confidence. Feel free to message me if you wish to speak more in private. We are here for each other.

      • #14546
        Brittany Foster
        Keymaster

        Thank you again for the support on this topic. I love your advice. It is so true that the more something becomes routine and just “part of life” the easier it is to manage. On days when I have bad brain fog (like this morning) I find it helpful to set timers for myself when I know that something is due or I know that I should be taking a medication. This morning I completely forgot if I had taken my morning medications already. Sometimes it can feel as if one day just blends into another ! Pain is also something that causes even more distraction. Having someone there to double check you is great advise too!

        • #14596
          Dori Herrick
          Blocked

          Absolutely tools to remind are crucial. As pain and disease complicates the memory, you become your own Personal Assistant.

          There are medication-reminder apps available for smart-phone. I use them daily to remind me when to take meds, even to remind me to refill my pillboxes.

          Also, notes. (Which can either be on paper or smartphone.) My Rule #1 is: Write it down or it is gone. My brain-fog from 3-serious diseases combined have made it so I know I can lose a thought in less than 5-minutes if I don’t write it down. I live with checking my daily to-do lists multiple times to be sure I didn’t miss things.

          One more word of advice: use your calendar. Remind yourself of when your appointments are, when to pay bills, anything you must know.

        • #14603
          Brittany Foster
          Keymaster

          Thank you so much Dori! I use the calendar on my phone daily and even use it for reminders for medications recently. I get an alert on my phone (similar to the alert I get for a text message) and it lets me see the reminder on the calendar. I don’t have an iphone or else I would share my calendar with my mom who always tries to remind me of important things too! Instead of sharing it on the phone, I make sure she is aware of anything up and coming like important tests or appointments so she can remind me too. A second person is always good to have !

    • #14610
      Randolph Reynolds
      Participant

      Dori and Douglas: The information you have shared in helpful. There are some questions unanswered by my Doctor who I visited to day. (It is over 100 miles just to get to his office.) I have had a lot of odd issues, besides the site pain that does get pretty bad. The PHA Doctor is going to try me on a pain killer. We shall see how that works. I just don’t want to be anymore “foggy” than I am when I’m off oxygen. However, as he and I discussed my progress he wants to know what the results are from the Remodulin but then I have only been on it for three months. I had the impression that the doctor has a new medication in mind but he wants another look inside my heart. (cardiac-catheterization) Maybe this is good as we can get. Bummer. It does seem there should be some common procedure but clearly we all respond to this disease differently. I see a psychologist on occasion about my emotional response to what it going on. I think my emotional problem is difficult to uproot and the counselor probably hasn’t dealt with many people who are struggling with PAH.

      Thanks for the communication.

      • #14624
        Brittany Foster
        Keymaster

        Randolph,
        I know it can seem so frustrating when the only way to really tell if a medication is working properly is with ANOTHER heart cath. Heart caths really can be a pain (literally and emotionally). I am glad that you are getting help for your emotional struggles and seeing a psychologist.It can be difficult when they don’t have much experience with PAH. Maybe sharing some information with them that your doctor can provide them about your prognosis, effects on daily life, or suggestions on what you can work on in therapy would be a good place to start. Even if you write some of these things down too before an appointment. For me, some of my biggest struggles emotionally are waiting around for test results and having the patience in the meantime, anticipating the unknown, and feeling out of control of my body. I would suggest writing things down so you don’t feel as put on the spot when you go to your session.

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