-
I always keep a notebook and pen or pencil with me for doctor appointments, and to be sure that, in advance of them, recording symptoms, food logs, or any other information that could be helpful. During appointments, I take notes or ask another to do so, especially when outpatient, and confirm any actionable items before leaving the appointment.
-
If there is something that I think may be difficult for me to bring up at an outpatient appointment or that I really do not want to forget or that may require a little research on the part of the doctor/team, I aim to email them a few days in advance noting that I'm hoping we can discuss these at my upcoming appointment. And then at the appointment itself, I ask if they received my email and if we can go through those questions as well. Often, they'll reply to the email as well, at least to note that they have it on their list of follow ups as well.
-
My transplant team is really great about following up on things, but sometimes other specialty departments may not follow up or follow through on things in the timeframe I'm expecting. I try to remind myself that, ultimately, I (with the help of my caregiver at times) need to take ownership of my care. Rather than getting frustrated at no response or no call in the time frame I was expecting and leaving things unaddressed for long periods of time while waiting for a doctor's office to contact me, I find it helpful to contact them. There are a lot of people involved in my care and communication can break down, even unintentionally and without the provider realizing that it has.
-
When inpatient, it can be hard to find ways to speak up. I find it helpful to keep a list of my questions in a notebook and be sure that my caregiver or family members are aware of them. If I know when the doctors will round, I try to have someone join even if virtually. I'll tell that person my questions and sometimes mention that, if I forget any, can he or she please ask them. Any key questions, I write on the white board and, at the beginning of my hospital stay, I mention to the nurse that I'd like to put my key questions on the board for them to address if I'm sleeping, and if she can mention it to the nurses at change of shift. I also mention it to the NP or PA assisting with my inpatient care. Depending on my situation, I'll ask if they can wake me up when they round, too, so that I can be a part of the conversation.
-
I work with my family or friends to help with asking questions in times when I'm sedated, or sleeping a lot, etc. Often at some point I'll check in with them during the day or they will be at the hospital. Sometimes it's also helpful to ask for the doctor or PA to be paged and see if they can come by when a family member or friend is there in order to talk through some of the questions that I may have overlooked.
-
I'm a strong introvert so rounds with a lot of people are naturally somewhat intimidating for me! I mention this at the beginning and often the team will send in some and keep the crowd in the hall.
-
If I have a visitor with me during rounds, and I don't want that person to be there, I politely ask them to step out while the doctor is rounding. Same for when other providers (labs, nurses, radiology, etc.) come by and guests are there. It can be a distraction from getting the care needed and asking the questions you want to focus on and ask if others are there visiting. I haven't lost any friendships over it! Often, the doctors will ask if they can give an update when another is there, which can also be helpful. Don't be afraid to answer according to your preferences and what will ensure you are taking the time and making the situation as comfortable as possible to participate in the conversations with those helping us with our medical situations. Even very close friends can, at times, inadvertently be a distraction.
