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    • #12070
      Brittany Foster

      I like to think that I am my own best advocate. But, unfortunately, this is not always the case. Although I am well versed in my medical history, am organized with my lists of medications, medical conditions, doctor’s numbers, and keep these things on hand, it is hard for me to advocate when I am under extra stress. This came up this past week when I was in the hospital receiving breathing treatments and had to be admitted over night.

      When I was in the emergency room, I was not at the hospital where my PH team is located. When I am at hospitals that aren’t specialized in the treatment of rare diseases, it is hard for me to explain my treatment protocol, make sure they have the appropriate records, and state my needs, especially during a physically and mentally stressful time.

      Today, I went over what could help me advocate for myself and my needs when I am in this situation. With the help of my therapist, we came up with ways that my medical conditions can be communicated to the doctors in the ER. We came to the conclusion that it would be best for my own doctor to write a list of my current medical conditions with a brief explanation of each one, medications, treatment, oxygen usage and protocol for wearing oxygen during activity and at night.

      Having something written out by my doctor and giving the medical team at an ER someone to contact in case of emergency will be very helpful to avoid any confusion and avoid having to explain my diagnosis over and over when I am not in the physical state to do so.

      Do you find it difficult to self advocate for your medical conditions and needs while in the hospital? How do you handle this? Does your doctor have any forms filled out for you to give to medical professionals? What helps to make this easier for you?

    • #12080
      Kathleen Sheffer

      My friend and I were just talking about this subject on a hike over the weekend. It’s especially difficult for me to be a good advocate for myself as an adult. When I’m in crisis I revert back to the survival mechanisms I developed as a child when it was okay to scream and cry. Now I have to be more diplomatic in order to receive good care. (Though, side note: pretty sure I saved my own life by clearing blood out of my lungs when I screamed at an ER nurse when I was having hemoptysis.)

      Anyway, my parents usually act as my level-headed advocates so I make sure to have them on call if I can’t have them with me in person. It’s always best to have another person in the room, even if it’s a friend who doesn’t know anything about your condition. They can at least listen, take notes, and bring you food!

      I’m so glad you’re using this recent hospitalization as a learning opportunity and working with your team to develop effective strategies to use in the future.

      • #12081
        Brittany Foster

        I’m way better than I was with advocating for myself ! That’s one of the biggest things I have been working on in therapy all these years. I started off not being able to even recite my medical history without having anxiety and PTSD episodes. Now I can recite everything it’s just a matter of “do these doctors at this other hospital have the correct info? Do they know my treatment plan?” In these moments it’s so hard to repeat the same things over and over again ! Having someone there definitely helps me a lot too!

        And I’m glad you turned into the one woman exorcist and screamed at the nurse ! That’s some real life horror movie stuff right there girl!

    • #12082

      I’m lucky enough that my only hospitalizations the past 25 years have been half days for outpatient surgeries. However, advocacy due to PHTN still has been a pain.

      The best story I have is from an extended throat surgery 2 years ago. They had me under on barbiturates and paralytics for the procedure because they can’t afford breathing reflexes getting in the way of the procedure. As you can imagine, my lungs aren’t going to be the fastest in the world to start competently functioning after 4 hours of paralysis. The following scene ensued…

      Me: (wakes up after 4 hours of being under, only to see a circle of nurses around the gurney)
      Nurse 1: “Breathe.”
      Nurse 2: “Breathe!!”
      Nurse 3: “BREATHE!!!”
      Nurse 4: “OH GOD HIS OXYGEN DROPPED TO 70%!! BREATHE!!!”
      Me: “Can you please get me some…”
      (All nurses together): “BREATHE!!!!”
      Nurse 1: (Goes to get oxygen)
      Nurses 2/3/4: “BREATHE!!!”
      Me: (Very nasty glare)
      Nurse 1: (Has oxygen and hooks me up)
      Me: (Saturation goes to 95%)

    • #12083
      Brittany Foster

      Love the story ! This is just added proof that it would be so helpful for the doctors that aren’t aware of your conditions to literally have your care plan spelled out for you! For me, they think something is seriously wrong when my sats drop below 88 even with 5 liters of oxygen. But for me, that’s normal. I feel unheard when I try to tell them this and it’s a lot of work to try and contact doctors. Having something that states all of this from a doctor that can bring validity to everything I’m trying to tell them would be so helpful !

    • #12095
      Robin Taylor

      Thank you all for the advice! I will get this from my doctors, I’m hoping being proactive will alleviate some of my worries. This is all still new to me. When I was hospitalized and first diagnosed last September, the endless nurses and RT’s freaking out over my low sats was really nerve wracking. Even then, I had to repeat over and over that this my “normal” now.

      • #12102
        Brittany Foster

        Hi Robin,
        I have had this experience before where hospitals that aren’t familiar with my conditions will “call my bluff” and keep me admitted as they try to “figure out” why my sats are low ! Having this document will help this worry. Having this happen before really has hurt my level of trust with certain hospitals and it emotionally traumatic for me to feel as though nobody is listening to what I’m telling them.

    • #12096
      Margie Novak

      For me, my sister, Linda, who lives with me and is my caretaker also is always there when I am taken to the hospital. She tells them everything they need to know .Also, all my medication is kept in a Ziploc bag along with a typed form indicating how much I take and when, Also, all of my doctors are typed up and in that Ziploc bag as well. Having someone there really really helps you deal with things!

      • #12103
        Brittany Foster

        Hi Margie,
        great advice ! Even with my mom always there with me, I have had experiences where neither of us are fully listened to. There have been doctors prior to diagnosis that have mistaken my symptoms of PH as “just anxiety” and sent me home with a prescription for ativan. We know our bodies best!

    • #12124
      Kaye Norlin

      I don’t have any problem advocating for myself but I think I learned some valuable lessons having a child with a disability for the past 33 years and working as a social worker for 40 decades. I do belong to a transplant suppor6t group at our local hospital and we have the PR rep there as our contact so he guides me as to how to get everything on the record. I also complete all of the evaluations and insist on speaking with the patient rep after every episode. They have educated the ER staff after one episode where a nurse was trying to learn what PH was when I went in with a malfunctioning Flolan line. I am pretty sure I raised my voice/screamed at her that I didn’t care that she didn’t know what PH was but I need a peripheral line and I needed it NOW. It took them 20 minutes to get the equipment and then find a nurse to put it in since the new ER nurse couldn’t get it done! I then was released to go to my PH treating hospital to get the issue corrected. Some things have changed since then and they are now more informed. I have a reputation there so they pay attention- and I have never sued or threaten to sue anyone in my life. It has helped me that I found my voice in the turbulent early 70’s in college so I tend to be outspoken- it helps.

      • #12125
        Brittany Foster

        I’m glad you are able to be outspoken and that you have found your voice. That certainly gives Hope that we can do that too !!!!! I always try to have them contact my pulmonary team right away even if I’m in a different hospital. That’s something that’s helpful. Because I learned that they don’t always take my word for it unfortunately

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