PH Caregivers, Family Members & Spouses

[Colleen Steele]

Hospital rounds are often overwhelming and exhausting for my son. As his caregiver I would request that they take place outside of his room but attend and advocate for him by taking notes, asking questions and giving my input if requested. As a caregiver, how do you deal with and make the most of hospital rounds?

[Brittany Foster]

Colleen,
Something that helps me is to immediately notify my team of doctors when I am in the hospital. You would assume that they would automatically be notified, but this isn’t always the case. My mom (who is my caregiver and support system while in the hospital) makes sure that my main doctors are in direct contact with the hospital staff that is taking care of me. No decisions are made or are final until they get the approval of my own doctors or my own care team takes over my care at the hospital instead. I know that they have their own system of residents and fellows and attendings, but it is NEVER the same and I don’t feel as safe not knowing that medical team. Something that always makes me anxious is having to recite my medical history multiple times when they come and do the rounds. I have learned that the “doctors in training” do NOT have to be in the room if you don’t want them to be. My mom helps by taking notes for me, and being my voice to answer any questions they have about my medical conditions. When we go into hospitals we usually have the most recent testing for them to look at, and I had my primary care doctor write up a list of all my medical conditions and my treatment plan for each condition. This has come in handy, especially because at this point I just give it to the “team” that is seeing me as sort of a handout overview of me LOL! But it DOES HELP! especially because this can be a reason for my increased anxiety having to think about all that I’ve been through an having to talk about it.

[Colleen Steele]

Brittany, it does get exhausting having to repeat your history and current status over and over to various people. My son does his best to respond to his personal doctor’s but for the rest, such as the “doctor’s in training”, he points to me and I take over the talking. Like you said, having as much on paper that can be handed over really comes in handy. You and your mom sound like an awesome team! Witnessing how the two of you work together for the best of your health probably seems complicated to an outsider, but in reality what you have is a highly functioning system. I bet you often feel like you share a brain and that she is always a tremendous comfort to you, especially recently!

We are right there with you on making sure things don’t proceed without the direct communication of our personal care team and doctor’s. There have been times when a decision was being made and I had a concern that everyone who should be in the know, wasn’t, so I would start making calls and sending e-mails and not rely on the staff paging system or the promise that a certain doctor would be contacted.

On a positive note regarding rounds, when my son was diagnosed with PH I found them to be a great learning tool. I would always have my notebook in hand and would write down a lot of what was being discussed. When I would hear a word I wasn’t familiar with or hear something I didn’t understand I would circle those in my notes for research later. If I still felt confused the next day then I would bring it up during rounds if there was an opportunity or inquire by phone or through e-mail. By doing this I became very knowledgeable and capable in contributing to the conversations during rounds, to the point that it was so tempting to answer the questions being asked of the residents. It sounds like your mom has utilized rounds in the same way.

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