Quan Boatman, an ATTR-CM caregiver advocate, shares the challenges of a long hospital stay and how small changes, like rest and time outdoors, can support well-being.
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Because Johnny’s disease wasn’t found until the late stage, when we found out that his heart was so, so damaged that he would need a heart transplant, and he ended up in the hospital for 148 days.
Being in the hospital that long, a hospital is not a place where you can get a lot of rest. Doctors coming in, labs being drawn all the time, constant monitors beeping, and his health would go up and down, you know, depending on the reaction for his failing heart.
Eventually, it was to a point where sometimes the nurses needed to come in to do labs overnight, doing vitals overnight, ultrasounds coming in at 2:00 in the morning, and he just wasn’t getting any rest. He wasn’t getting any sleep.
Having that conversation with the medical team, I really asked, “Is there anything you can do just to, you know, help so that he can have his rest?” He’s one of those people that really needs eight hours of sleep — which you cannot get in the hospital.
They actually were able to put in do not disturb orders between I think it was like 11 p.m. and maybe like 5 a.m., and so that really made a huge difference. You know, being in the hospital that long, that means a lot when we can just get some sleep.
Johnny also is a very outdoorsy person, loves to be outdoors. And if you can imagine not being able to be outside for so long, they were amenable to, you know, setting up a process that he would be able to walk outside with his IV pole and all his, you know, medication, and either one of the nurses or the care partners would escort him so that he can, you know, get outside, get some fresh air, walk around.
And that made — mentally — I think, a huge difference for him of being able to have some type of normalcy, in the midst of everything that was going on.