What is your name and where do you live?
My name is Ron and I am currently living in Kirkfield, Ontario.
Why are you familiar with St. Jude Medical?
I had a St. Jude Medical CRT-D implanted in January 2006.
What is your diagnosis and what was the situation surrounding your diagnosis?
In January 1992, I had three heart attacks in one day. The following day, I was admitted to the hospital and one week later I had triple bypass surgery. After the bypass things seemed to be going well, but not great. I kind of slid downhill and the doctors figured I had a number of silent heart attacks. Every time you have a heart attack there’s more damage to the heart. I was having a very bad time. They were changing my medications. My ability to do anything significant had dropped off and my energy level was non-existent. For a long period of time I got out of my bed and put on my dressing gown and that was it for the day.
My first experience with congestive heart failure (CHF) was in February 1997. Then, in January 2001 I was diagnosed with leaky valves. In May 2003, I spent four days in an intensive care unit for unstable angina. Then, in January 2004, I experienced CHF again. I had angioplasty in April 2004. I went on to have my CRT-D implant in January 2006. Finally, I had angioplasty in August 2007.
At some point during all of this, when I was 48 years old, one of my cardiologists said I would not live to see 50. Needless to say, that was very depressing to hear. I ended up not going back to that cardiologist, but several others I saw confirmed what the first cardiologist said but in more delicate terms.
I went so far downhill that I was becoming a couch potato. I was pretty depressed. At the time, I was commuting to Toronto from a town north of the city and the commute became stressful. During the work day I was already on light duties and nothing else could be done to lighten my load. I ended up having to leave work before my actual retirement.
At that point in time I was referred to a young electrophysiologist (EP)/surgeon. We got along well and he was very encouraging and upbeat. He told me that this CRT-D might fix me up and I’d be better off for it.
What type of doctors did you see and what were their roles?
We moved quite a bit at that time. I switched general practitioners a few times. And then, when I didn’t like the prognosis I was hearing, I switched cardiologists. I sort of had this feeling that I was being written off until I met the EP surgeon. He changed my world. He changed my feelings about the future and gave me reasons to believe I had a future.
How much time elapsed between your diagnosis and when you had your CRT-D implanted?
I had my first CHF experience in 1997 and in 2006 I had my device placed.
Who helped you through this experience?
My wife was the biggest help and my EP surgeon. The other doctors I saw—general practitioners or cardiologists—none of them offered a lot of hope. They didn’t suggest a CRT-D. It was the EP surgeon who said, “We have a device that we can implant that can change all of this for you.” He showed us the unit, how it hooks up, what it would do for me, and gave me reason to believe there was a future.
Did you feel like you got enough information beforehand from your doctor, or did you go in search of more?
I got enough from my doctor. I must admit that I did go to the Internet. I searched ischemic dilated cardiomyopathy, because that’s my diagnosis.
Initially, did anything concern you about the device?
My life was spiraling downhill and my doctor was offering me some hope for a more regulated life. I was eager for the device. He did a good job explaining what this thing could do for me and how it would affect me. I looked forward to it. I was gung-ho to get it done.
Going into the procedure to have the CRT-D placed, what did you know about the risks?
The doctor told me that any kind of surgery has a certain risk factor, and he also told me about the risks associated with this particular procedure. But in all honesty, when I compared the risks and the advantages of the implant, I felt the advantages were greater.
Did you experience any complications?
The device has gone off, but I’ve had no complications.
How does the device help you?
I enjoy woodworking and have a two-car garage attached to the house. We never park in there because it’s filled with wood and tools and I’m out there almost every day working on something. I try to do as many chores as I can around the house—lawn cutting, trimming, leaf blowing. I’ll get up on a ladder and clear a leaf trough. All kinds of stuff that I wouldn’t have dared to think about before.
What surprised you during this experience?
How well my device works. I noticed a difference in my energy level within 24 hours and my wife did, too. For sure! She asks me to do something now and I can actually do it! Now we’re back to having the “honey do” list.
Do you feel confident in your device? Do you place a lot of trust in it?
Yes. I would say the confidence that I have in the device is unbelievably high because it’s already saved me once. I didn’t even know it had gone off! It went off at about 2:30 a.m. and my heart rate—believe it or not—had soared to 282. The people at the device clinic who read the downloads and my cardiologist believe I was having a nightmare and in the course of the nightmare my heart rate skyrocketed and the defibrillator got me back down to where I should be. They also said that had I not had the device, I simply wouldn’t have woken up in the morning. That sure gave me more confidence in the device. It saved my life and has never gone off again.
What is it like on an emotional level living with the device? Do you ever have stressful feelings about the CRT-D?
I only have good thoughts about my device. I have no worries about it.
Describe your interaction with your doctor(s) throughout this experience—from the beginning until now.
The EP surgeon was the first one who told me there was this treatment called a CRT-D. I had seen probably six to eight cardiologists before him. Some of that was because we moved around.
Did you access any support groups or other resources to give you peace of mind?
After the procedure, what type of follow-up care did you require? Will you need a replacement device at any point?
Once the device was implanted, I went to a device clinic staffed with registered nurses who are specifically trained to gather information from my device, monitor it, and answer any questions about the device. During the first year I had to go to the device clinic every 3-4 months. Then they were satisfied that every 6 months was enough. Now that I have the home monitoring system, I only go once a year.
I will need a replacement device in the next year because the battery life is almost expired. I have no problems with getting a replacement. And they tell me my next device will be even more advanced! My only fear would be if they wanted to take it away and not give me another one!
What is required for the care and maintenance of the CRT-D?
I go to the device clinic for downloads and I have annual visits with my doctor. The clinicians check the battery level and the settings. There’s nothing else that I have to do.
Do you have to keep anything in mind when traveling with the device? Have you ever had to find a physician while traveling?
I don’t travel very much because I have arthritis.
How often do you see your doctor? What type of doctor do you see? What happens during those appointments?
Once or twice a year I see my cardiologist and I see my general practitioner for other day-to-day things.
The device clinic checks my battery and settings and sends my cardiologist a report. They’ll usually organize my appointments so that I get into the device clinic for the download, and then right after I see my cardiologist and he has the download report. He checks things like my weight, edema in the ankles, and any chest pains. It’s usually a very quick appointment with the cardiologist.
What are you looking forward to?
Well, the last few days my wife and I have been cleaning the glass and frames of every picture in our house. We’re having the house painted and new carpet put in. We recently had a new heating system installed, and in the spring we’ll get an air conditioner. So we’re fixing up our house, and we have a dog, and with any kind of luck in the spring we’ll do some fishing.
What would you say to someone who was considering a St. Jude Medical CRT-D?
If you’re in the shape I was in before I got mine, you will be so glad you did it. I hope it will give you your life back.