Carole’s Story: Putting My Health Goals First
Before I started Patient Priorities Care, I sometimes felt like doctors wouldn’t listen to me. I’ve been sick my whole life with one thing or another – for example, I have suffered from diabetes, congestive heart failure, and asthma. And then two years ago I had a heart attack and a double stroke.
When that happened to me, I had to have my heart opened and a new valve put in. Between the surgery and the rehabilitation, I was in the hospital for 80 days. I knew I was going to have the operation, but the rest of it – like the therapy – I wasn’t expecting. My husband and one of my daughters told me I had technically died, then came back. I had to re-learn how to walk and talk.
I had to take a lot of medicines, and go to a lot of medical appointments. I was feeling overwhelmed about not being able to do the things I used to be able to do. That’s when my doctor suggested that I talk with Kizzy, a goals facilitator who works with her.
I like Kizzy because she listens. What’s the point of sharing your feelings if no one listens? This care is important because it puts what the patient wants first. And the only way the doctors can understand what you truly need is by listening to your story. This was a new experience for me. Previously I had felt like doctors thought I was complaining when I talked about what was bothering me about my health. But Kizzy explained that this new approach to care involves setting goals so my doctors can help me do more of what I want to do.
Kizzy and I talked about what was hardest for me to do because of my health. I am proud to say that I have been sober for 37 years, and it’s important to me to get to my recovery meetings. I also want to be able to stand long enough to greet new members as they arrive. Dancing is also one of my passions. I’ve been dancing since I was 19. It’s something that I love to do and is important to me. I used to go to those meetings, kick my shoes off under the table and dance. I told her that building my strength is important to me, especially because I could no longer walk to the stop sign because of muscle tightness in my legs.
We also talked about other things that frustrate me about my healthcare. I take many medications, which I know is par for the course as you age, especially if you’ve had health issues like me. My older daughter worries that some of my medicines are unnecessary and often I forget to take them. It’s overwhelming. I told Kizzy that I would love to be able to cut down on the amount of different medications I have to take. I also said I’d like to not have to do as many things, like using my CPAP machine. It’s not helpful to me and I’ve wondered whether I really need it.
After we talked, Kizzy let my doctor know the health goals we discussed, including being able to walk more so I can greet new members at my meetings, being able to slow dance, and stopping use of my CPAP machine if my leg spasms continue, because I don’t think it is helping.
Then, my primary care clinician spoke with my cardiologist. They agreed that I no longer need to use the CPAP machine. Also, my primary care clinician sent me to the wound clinic for lymphedema care to help me get stronger and be able to walk better.
And today, thanks to working with Kizzy and my healthcare team, I have more time to do things that I enjoy. I’m happy to say that, as long as my husband can drive me, I can go to my meetings again. I’m working towards regaining my strength and being able to walk more and longer and cut down on my medicines. And, most important of all, I am able to kick off my shoes and slow dance.
People don’t know my story just by looking at me. I don’t look like I’ve had a stroke or nearly died. Not everyone knows what I’ve been through. But thanks to Patient Priorities Care, I have a care team that listens to me, and has made changes in my care to help me do more of what matters most.