One couple shares their caregiving experience as hATTR-CM impacts their lives.
Transthyretin amyloid cardiomyopathy (ATTR-CM) is a rare, progressive condition where the transthyretin (TTR) protein builds up in the heart muscle, making it difficult for the heart to function properly.
When the condition is hereditary (hATTR), it can affect multiple systems of the body — from the nervous system to the heart — and often runs in families.
For Carolyn Rodriguez, the journey began with her body “shutting down” due to autonomic dysfunction (dysautonomia). After extensive testing with a specialist, she was diagnosed with hATTR, and two years later, she developed cardiac symptoms and was diagnosed with ATTR-CM.
Today, Carolyn and her husband, Jose, navigate this journey as a team in Florida. While Jose serves as Carolyn’s primary caregiver, Carolyn also helps care for her mother, who was recently diagnosed with amyloidosis. Together, they have become active in the amyloidosis community, advocating for the importance of communication, using trusted resources, and asking for help when needed.
Jose and Carolyn spoke with Healthline about their experiences.
The following interview has been edited for length and clarity.
Jose: Getting that definitive diagnosis was incredibly difficult because ATTR-CM affects the autonomic system — the parts of the body you have no control over. It means you never quite reach a state of balance or homeostasis, so every day is different.
But honestly, once we had a name for it, it felt like a sense of hope. At least then we could look it up, find assistance, and formulate a game plan.
Carolyn: It was very emotional for me. I’ve always been very independent, and suddenly it felt like I was having to learn my body all over again. Jose has been wonderfully supportive, especially with his background as a retired nurse, but that transition was hard.
I remember feeling horrible because I couldn’t even cook a meal for my family; my husband and kids had to step in and take over everything.
Jose: As a caregiver, I had to figure out a balance. Carolyn is so strong-minded and self-determined that I had to ask myself: “How much is too much?” I’ll admit there were times when I was overbearing, and she definitely let me know. I had to learn that being a caregiver requires a lot of patience. You have to learn to step aside and let the other person be, even if things take longer.
Carolyn: I had to be vocal about that. I told him, “I need to do this myself.” Whether it’s just fixing a bowl of cereal or making some eggs, I have to hold on to some level of daily functioning.
Jose: That was a big lesson for me — learning not to over-schedule or make rigid plans for the day, but to simply take each day exactly as it comes.
Jose: Communication. There were difficult days when my suggestions or questions didn’t get the response I expected, and I’d start to doubt myself. I’d wonder if there was a better way to approach her, but often it was just too much for her to process. She would just say, “I can’t do this right now.”
Carolyn: If I got too much input at once, my brain would actually shut down. At one point, I even had to do 6 months of speech therapy because I was slurring my words. When my brain said “stop,” I just needed to be left alone for an hour, but Jose was always on a schedule.
Jose: I had to learn to let her find herself again, and sometimes that would take two or three days. It’s incredibly hard as a caregiver; I can see why people end up fighting with their family members. I didn’t want to be that guy, so I had to teach myself to be extra patient.
You just do what you can. You can’t beat yourself up over it because, at the end of the day, so much of this is out of everyone’s control.
Jose: She’s actually the one who is teaching me. I go on websites and read things, and on occasion, I might suggest something or say something to her about what I’ve read.
But she’s been a better advocate for herself; I just try to support her. She’ll send me websites and information, and I’ll read them. The good thing is that you get to ask the doctors those questions, but she’s already got them written down.
Carolyn: There’s the Amyloidosis Research Consortium (ARC). They put together webinars featuring cardiologists, neurologists, and other doctors directly involved in treatment. You can actually ask them questions.
They have really been so helpful to me. I know how to manage this condition because of the conversations I’ve had directly with doctors.
The support group on Facebook for amyloidosis has also been my lifeline because you feel like you’re not alone in this fight. And it’s really a fight. I make sure I’m educating Jose because I was a teacher, so my first priority is to teach. I wanted my kids to be aware of what might be coming, too, so there’s a reduction in the emotional toll, given what we’re all experiencing.
My mother also has amyloidosis. When I became her caregiver, I needed to be like, “OK, I don’t know it all.” You have to reach out to others who have been there already. There are plenty of helpful caregiver resources on the Internet.
Jose: It’s definitely a life balance. I try to do certain things in the morning and then leave an opening for what comes next. For me, the most difficult part was retiring and then suddenly moving to Florida; those are life changing events on their own, and it took me some time to adjust to everything.
Carolyn: We try to do local things together. There is a lot to do here, which is wonderful. We’ll go to museums or places like that — somewhere you can go through in an hour and a half just to get out of the house.
Jose: It took about two years before I felt like myself again. After that, I incorporated a little bit of golfing, and I have a health coach now. We work on diet, stress reduction, and sleep. Those have become the main things that support me.
Jose: I would say people need to take the time to really learn about the diagnosis. There are a ton of websites, foundations, and associations that offer resources to adapt to it. Once you have that knowledge, you might not feel as overwhelmed when it comes to asking for help.
Carolyn: Asking for help is a big one. Because I’m also a caregiver to my mom, who is 91, I’ve learned that knowing the signs of depression and the signs of progression into something worse is very important.
[Jose and Carolyn also recommended the Caregiver Action Network, Lotsa Helping Hands, and Caring Village for caregiving resources.]
Carolyn Rodriguez lives in Florida with her husband, Jose. After being diagnosed with hereditary transthyretin amyloidosis (hATTR) and later ATTR-CM, she has become an active member of the amyloidosis community and a strong voice for patients and caregivers.