Tips for Caring for Pulmonary Hypertension Patients

This topic contains 8 replies, has 3 voices, and was last updated by  Brittany Foster 1 year ago.

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  • #11049
     Kathleen Sheffer 
    Keymaster

    This post suggests four tips for caring for PH patients: educate yourself, get organized, don’t panic, and show respect. What have you found to be helpful as a caregiver? As a patient, I feel strongly that my caregivers need to take time for themselves and make sure they are prioritizing self-care. After all, how can they care for me if they aren’t caring for themselves? Easier said than done.

    An educated and organized caregiver is invaluable at appointments. My mom remembers dates of tests and surgeries throughout my medical history – it’s so impressive! What do you do to stay informed without getting overwhelmed by a negative prognosis?

  • #11809
     Brian Gilbert 
    Participant

    Being a great listener is a must when caring for someone with PH, or any other disease for that matter I’m sure.

    I learned very early that trying to console my wife with medical logic when she was down, was not helping her. She just wanted me to listen and provide a shoulder to cry on.

    I keep a Note on my phone of her medical history, current medications, procedures, dates, etc. Having this data is very valuable when we see her specialist in Atlanta. He’ll ask about lung drains or when her last paracentesis was and I’ll hand him my phone. The note contains dates along with how much fluid was drained during each procedure. Most all of us have our phones with us at all times, so I felt it was easier to keep notes there rather than in a notebook that we’d probably forget to take with us to her appointments. : )

    I find consistency helps me out as well. When changing her IV meds or her site patch, I lay out all of the items needed in the exact same way every single time. She tried to engage in idle chit chat, and I ask that she not because I don’t want any distractions during those few minutes.

    Taking care of yourself is paramount. If she’s in the hospital, I’ll stay with her, but leave around 5pm unless the situation requires my presence. That gives me time to unwind and recharge before I go back to the hospital the next day.

    • #11811
       Brittany Foster 
      Keymaster

      Brian,
      Thank you so much for your response. It’s so great to have your perspective on this as someone caring for a loved one with PH. It’s so hard to keep track of everything so I really like your idea of doing this from your phone. Because you’re right, normally nobody leaves home without it ! My mom is in charge of most of my medical records and info when we take hospital trips and still relies on old school notebooks and folders! If she were tech savvy this would be so useful for her. They have a lot of good medical apps now too. Do you use any specific apps?

  • #11838
     Brian Gilbert 
    Participant

    Right not I’m using Notes that comes with the phone. However, you’ve piqued my curiosity with regards to an app. Funny, I’m technologically advanced and didn’t think of looking for an app. Sometimes I’m too inside the box. LOL! Thanks for making me think. I’ll let you know if I find anything worthy.

    • #11840
       Kathleen Sheffer 
      Keymaster

      My iPhone comes with a Health app that I never use, except occasionally to look at how many flights of stairs my phone thinks I’ve climbed. Turns out you can import your medical records to the app from multiple sources (I’m seen at two different centers and have two different online logins, so this is great). I just did it and it already has all my allergies, medications and even immunizations imported! Apple’s Health app also comes with a feature where you can register to be an organ donor (hint hint)! Not sure if there’s an Android equivalent – keep us updated on what you find.

      • #11844
         Brittany Foster 
        Keymaster

        Brian,
        I’d definitely love to know if you find any good apps. An app that would allow you to transfer in medical records would be awesome too! Or scan in results of recent testing. That way you could possibly eliminate having to carry around folders of test results! Technology can be really awesome for this stuff. I know there’s a lot of health tracker apps that people can record information like their blood pressure, oxygen levels, etc. Samsung has a good health app that allows you to keep record of these things and even test you oxygen levels using your phone (mine has been pretty accurate surprisingly!

  • #11906
     Brian Gilbert 
    Participant

    Nothing yet, unfortunately. Kathleen, I had no idea about the Health app importing records until I started doing some digging. Which means I haven’t taken advantage of this feature. I explored further and unfortunately, the hospitals that my wife goes to aren’t ‘connected’ yet to the applesphere so her records can’t be imported at this time.

    I do have Excel on my iPhone along with OneDrive. Excel would be a little more robust than Notes and sync across my devices via OneDrive. I may copy her stuff over and see if I like that better than Notes.

    I’m going to keep searching though. If we have a need for this, so do other people and it would really surprise me if an app that serves our needs doesn’t already exist.

  • #12046
     Brian Gilbert 
    Participant

    Well, I’ve looked at a few apps and although they track vitals, medications, etc. nothing does the job any better than the Notes app I’m already using. So, for now, I’m sticking with that method. If I do come across anything that does better than Notes, I’ll let you guys know.

    • #12047
       Brittany Foster 
      Keymaster

      Hi Brian,
      thank you for looking into this further ! I use an app to monitor my heart rate and blood pressure and can include notes as part of that. It’s actually made from Nokia it’s a blood pressure cuff that sends the data right to the phone of heart rate and blood pressure and allows me to add notes to monitor what I was doing at the time and how I was feeling. I like how you take advantage of using your notes app ! such a great tool for advocacy !

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