Pulmonary Hypertension News Forums Forums PH Care and Treatment Diagnosis Information and ​General​ ​Questions How Can Someone You Bring To Appointments With You Be Most Helpful?

  • How Can Someone You Bring To Appointments With You Be Most Helpful?

    Posted by brittany-foster on August 13, 2018 at 4:01 pm

    Some of our PH forum members have shared that they bring a significant other or family member to appointments and testing with them. I always like to bring my mom with me for appointments. Over the 27 years of my life, medical terms, thinking of questions, and helping me prepare for appointments in advance has become second nature to her. She brings a notebook with her to all appointments and writes down everything that is important in case I miss something due to the stress of the visit.

    My mom makes sure to pack something for an overnight bag, double checks to make sure I have all my medications and medical equipment, and always tries to make each appointments and visit as enjoyable as possible. We usually will get ice cream or lunch after the visit is over and recap what was said.

    My mom had to learn what is helpful during appointments for me and had 27 years to learn this. I can imagine that it must be difficult for a significant other or someone who isn’t familiar with going back and forth to appointments and testing. I can see this with my own boyfriend and how easily overwhelmed he can get. The truth is, these types of skills aren’t second nature to most people. They need to be told exactly what is helpful. As patients, we can’t expect others to just know what we need.

    Who do you bring with you to appointments? In what ways are they helpful for you and what things do they do that you really appreciate? What tips would you have for a caregiver looking to be as supportive as possible during appointments or testing?

    brittany-foster replied 5 years, 7 months ago 4 Members · 8 Replies
  • 8 Replies
  • kathleen-sheffer

    Member
    August 13, 2018 at 4:11 pm

    Great topic! I make sure to prep my caregiver(s) before the appointment so they know what questions I am going to ask. I also make it clear that I want the conversation to be between my doctor and me. Growing up with PH, I spent too many appointments listening to the doctor talk to my parents instead of talking to me. Now my parents know that they can ask their questions at the end when I give them the chance, but that I will direct the conversation. Maybe I’m being overly controlling, but I feel that this sends the message to my physicians that I am my own advocate and responsible for my care. It’s important that they know I am knowledgeable and engaged (especially for getting on the transplant list)!

    • brittany-foster

      Member
      August 13, 2018 at 4:22 pm

      Yes! Such a good point. As a young kid with health conditions, my mom was always the one to do all the talking. I always just say back and basically observed. It wasn’t until after I gained more knowledge about my conditions that I felt the need to advocate for myself more and felt like I was actually doing something for myself. This helped me a lot with my anxiety too because it made me build a better relationship with the doctors and they could see me as “knowing my stuff” vs just being quiet about it. Thanks for sharing that important point!

  • deborah-laird

    Member
    August 14, 2018 at 2:59 am

    For me personally I’ve only taken my mum once so far and mostly have asked her to listen and pay attention Incase I miss any information given. I have also let her know what questions I’m going to ask and if she wants to ask anything she can at the end.

    • brittany-foster

      Member
      August 14, 2018 at 9:28 am

      I like that idea about letting them know the questions beforehand. It can be very overwhelming for us and for who we are bringing with. Always best to prep them before so we don’t throw out any huge surprises!

      • kathleen-sheffer

        Member
        August 14, 2018 at 11:59 am

        Yes! Also important to feel like you are on the same team. Ideally you are on the same team as your physicians as well. We’re all battling the disease together, and going in with the same information as a united front helps you stay in that mindset.

  • constance

    Member
    August 14, 2018 at 11:02 am

    Good morning Ladies,

    I take one of my best friends with me when I go, her parents were both doctors so she has extensive medical knowledge, and she helps me understand some of the things that are overwhelming. She also rats me out when I have done something I really shouldn’t, LOL my doc just thinks the world of her and I love her bunches. So I surely recommend taking someone with you when you go, 2 sets of ears are less likely to miss something.

    • kathleen-sheffer

      Member
      August 14, 2018 at 12:02 pm

      That’s wonderful! Knowledgeable friends are especially helpful because they have the added perspective that comes from not actually being a family member. They are more likely to act rationally than emotionally-charged spouses or parents. I’m sure it makes your friend happy to be able to lend support, but it’s always nice to remind our caregivers of their impact. Maybe screenshot your comment here and send it to her so she knows how much you love her and benefit from her perspective!

    • brittany-foster

      Member
      August 14, 2018 at 12:26 pm

      Constance this is awesome that you have a friend like that. My sister is like that friend for me and isn’t shy when it comes to speaking her mind. She will say things like “yea, Britt SHOULD be wearing her oxygen a lot more!” Things that I wouldn’t necessarily openly share with my doctors, she’s totally one to rat me out too. I’m glad you have someone like this in your life, and you’re right kathleen, it goes a long way when you remind someone how much they mean to you!

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