Quan Boatman, an ATTR-CM caregiver advocate, discusses how communication, shared planning, and tracking symptoms can help patients and caregivers better navigate doctor appointments and treatment conversations.
Transcript
I started, you know, really talking to him about “What are the things that you’re feeling,” so that we can kind of make sure that we’re communicating with the doctors so we have a better holistic understanding of what’s going on, what he’s feeling, so that he can be better prepared for the doctors to understand what’s going on so that they can most appropriately treat him.
Jointly planning those doctors appointments, I think one of the things that I really started with is documenting — having your phone all the time really was helpful for being able to take notes, you know, between appointments to notice, “Well, this is going on, and this is going on,” and having that documented.
So you always have it ready, and you always have a summary that you can go through at the doctor’s appointments. And then as questions come up, being able to take those notes and then have them ready.
Also, asking your care partner, I think what was very helpful for us was asking him how he wanted me to support, because I didn’t want to kind of take over, but I wanted him to be able to, you know, speak up and talk about his health and the planning of it.
You know, it’s sometimes a little overwhelming, but being able to, you know, ask them how they want you to be involved.
One of the things that I think was helpful in managing so much was having access to different tools. You can keep up with your appointments, you can review your test results.
And we would go through all of those together. I had my access, and he had access, and a lot of times when he wasn’t feeling well and he had a question or something to address, I could log in and communicate with the doctors and nurses and let them know what was going on and be able to get a response back.
