Advocating For Family's Health: What Have You Learned?

Kim:

John’s first cardiac event I had a 2-year-old and a 5-year-old and it was really hard to not be with them. I was fortunate that I had great care for those kids, but their dad was my number one priority at that point in time and it was really hard but I was there everyday, all day. I’d come home at night, sleep for a little while, get up; go back to the hospital for 15 days.

When he had his heart transplant you can’t just get the transplant and leave. You have to stay close to the hospital for a while because rejection is such a huge issue. That meant we had to live in Tucson while our kids were in school in Mesa.

Once again, I was blessed. I had great care for my children, but you have to be willing to say this patient needs someone there to ask the questions, to track the medications, to watch for the reactions to medications that aren’t…that patient’s not normal to you, that a nurse, regardless of good intentions, doesn’t know that it’s not normal so that you can be the voice that speaks up when they can’t speak up.

And then after, I mean he is fine, but it’s still, and I am blessed because he is really, really good at taking care of himself. Did you take your medications? Yeah. What’s bothering you? There’s a little bit of depression. A lot of people who have heart disease suffer depression after they’ve had significant events. Managing through that depression, being the sounding board of, “Do you think this is right? Well, I don’t know, maybe you should call the doctor.” Sometimes that’s your role too is the “I don’t know. Let’s called the doctor,” role.

So it’s really being present. You have to be present in the person’s world and really know what’s, paying attention to what is going on with them so that you can be their advocate and you can provide them the care.

My name is Kim. My husband has had cardiac problems for a long time. He had, was diagnosed with a heart valve problem when he was young. He had a heart valve repair and then he suffered a sudden cardiac death, but he survived. He had a daughter, my stepdaughter; her name was Jennifer. She was diagnosed with the same heart valve problem and at 24 she suffered sudden cardiac death but she did not survive.

And John went on, after a couple of other events he had endocarditis. He had a heart valve replacement and eight and a half years ago he had a heart transplant and he has survived and done beautifully well.

During that time we had a lot of care at Banner Heart Hospital and so now we do a lot of work with Banner Heart Hospital working with the women’s heart center to communicate to women about the education about what is heart disease in women, how important it is for women to take care of themselves and be aware of heart disease as a killer of women, and what they can do to prevent heart disease for themselves and also for their family.

The most important way you can be a good advocate is to be there and it’s really hard. There is nothing worse than sitting in a hospital room all day for days on end, but you are going to hear things that that patient is not going to hear and you are going to see things that that patient is not going to see and you are going to have the frame of mind frequently to ask the questions the patient wished they could have asked. So you have to be there and it’s hard.

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Tags

• Heart Disease
• Mitral Valve Prolapse

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