Patient Stories

Alice: CRT-D Recipient

Alice, CRT-D recipient

 

What is your name and where do you live?

I’m Alice and I live in Las Vegas. I am 68 years old.

Why are you familiar with St. Jude Medical?

I’ve had a St. Jude Medical CRT-D device since June 2008.

What is your diagnosis and what was the situation surrounding your diagnosis?

I wasn’t feeling well and I had pneumonia twice within four months. My doctor sent me to my cardiologist and that started the ball rolling. My diagnosis was congestive heart failure (CHF). I couldn’t walk from one room to another. I could barely get around, and my face—people told me my lips were blue. I was pretty sick.

What type of doctors did you see and what were their roles?

I saw my primary care doctor and then I saw a cardiologist. Finally, I saw the surgeon who performed the operation.

How much time elapsed between your diagnosis and when you had your CRT-D implanted?

Not very long. They were very fast about doing everything and so it all happened within a matter of weeks.

Who helped you through this experience?

I don’t have anyone here. I have very few friends. My ex-husband did come and help me a bit. But really I had to pray a lot and rely on myself.

Did you feel like you got enough information beforehand from your doctor, or did you go in search of more?

I am a searcher. I want to know everything there is to know about my condition because I don’t have a family here and so I’m the only one the doctors and nurses will be talking to. I did the same thing when I had breast cancer. I ask a lot of questions of my doctor and I rely on people in the office—like the nurses—to educate me. Whenever they took a test I would ask what it was and what it measured. Slowly but surely I got the answers I needed. And they treated me like family.

Initially, did anything concern you about the device?

Naturally, I had concerns. I’ve had serious illnesses in my life and I always depended on my heart to be strong to take me through those illnesses. It’s not like a diagnosis for a toothache or an earache because there’s no pain involved. I was very upset and very cautious. But I had a lot of faith in my doctors and that helped me a lot.

Going into the procedure to have the CRT-D placed, what did you know about the risks?

They explained it all to me. There were probably more risks when I had my back operation in 2002! I know there are always risks, but I put myself in God’s hands and knew it was what I had to do.

Did you experience any complications?

Yes. I came home and I was experiencing stabbing pains in my heart each time I took a breath. So within that first week I went back to the hospital for surgery to adjust one of the leads. After the surgery the situation was resolved. I was apprehensive when I came home because I didn’t want the leads to come out. I guess I just didn’t realize how sturdy they are.

How does the device help you?

The difference is like night and day. I go to the gym and exercise. I swim. I basically got my life back. I described myself as a slug before because I was sleeping continually, all day. Basically, I recovered my life thanks to this device.

What surprised you during this experience?

Probably that I went through it so easily and so quickly. And now I don’t even know that it’s there. I completely forget about it.

Do you feel confident in your device? Do you place a lot of trust in it?

Yes. I feel like I have a backup system. It’s good to know that if my heart does decide to go haywire, I have a plan B. My heart has gotten better and the muscle is getting stronger. It is not as enlarged as it once was.

What is it like on an emotional level living with the device? Do you ever have stressful feelings about the CRT-D?

This entire experience made me aware of my heart. Most people are not aware of their heart because it’s like blinking in that it’s so automatic. When I first learned I was getting my device I was knocked off my feet to think my heart was that bad. After I received it, I was nervous for a little while because there’s a foreign thing in your body. But like anything else, time takes that away and you forget that you have it.

Describe your interaction with your doctor(s) throughout this experience—from the beginning until now.

I know I can ask my doctors any question and get an honest answer with no fluff. From the beginning I told them that I was the only person who would be dealing with me and that I like to know information. So when I go there, I get excited. They can tell me what’s happened the last three months with my device.

Did you access any support groups or other resources to give you peace of mind?

No, but I knew they were there. In the newspaper I saw there were support groups. I’m not funny about going to that kind of thing, but I didn’t really think I needed it.

After the procedure, what type of follow-up care did you require?

My recovery was a lot easier than I thought it would be. I was only limited to picking things up and raising my hands above my head. And that’s basically what I had to be careful of. My recovery was so easy for me and I was here most of the time by myself and I didn’t find it hard to take care of myself. I was able to go back to work. Years ago I had a knee operation and I can remember how limited I was after that procedure and how I needed someone to come and prepare food for me. This was a whole lot easier than that experience.

Will you need a replacement device at any point?

The battery lasts about 10 years, so that’s further out on the horizon.

What is required for the care and maintenance of the CRT-D?

My cardiologist checks me every three months and that’s about it. There’s usually someone there from St. Jude Medical and they hook me up to the computer. I look forward to those appointments because my St. Jude representative has taken such good care of me. He’s made time for me and answered every question in detail.

Do you have to keep anything in mind when traveling with the device? Have you ever had to find a physician while traveling?

I’ve traveled from the East Coast several times. I just make sure I’m prepared to go through security. It requires a pat down which doesn’t bother me at all. I’ve never needed a doctor while traveling.

How often do you see your doctor? What type of doctor? What happens during those appointments?

I see my cardiologist every three months. He hooks me up to the computer and evaluates my device, checks my blood pressure and prescriptions, looks for any swelling, and gives me a thorough check up.

What are you looking forward to?

Staying healthy and taking good care of myself. I try to be a good person. I’m very thankful for what I have.

What would you say to someone who was considering a St. Jude Medical CRT-D?

It may change your life. I don’t think it’s going to be the worst thing you’ve ever gone through. And I really don’t think it’ll be as scary as you think it might be. I was like a slug and now I’m back at work and doing all the things I enjoy. Research your doctor and your device. Get information. That’s my advice.

Last Reviewed: April 25, 2011 V-00304