Chris Wade was used to pushing hard. A commercial baker who regularly worked 15- hour days, he barely took a break when he developed viral pneumonia in 2003. Though he seemed to recover, the virus moved into his heart and unbeknownst to him, enlarged and weakened it over the next four years.
Wade had no idea his heart was in danger until one night he laid down and found himself laboring to breathe. The condition worsened until he couldn't climb a flight of stairs. Doctors diagnosed congestive heart failure. He had a pacemaker put in and later a left ventricular assist device, LVAD, a mechanical device that helps the heart do its job of pumping oxygen rich blood throughout the body. He talks here about his nine-year medical journey that culminated in April 2012 with a heart transplant.
What happened after you first learned your heart was failing?
I got a pacemaker put in and lived the next seven years with heart failure, going to see a cardiologist regularly. I kept bloating up with water and then having to take diuretics. I wasn't able to walk more than a couple of blocks at a time. So I had to go on social security and sell my bakery. I lost my marriage. I just kind of laid low and did pretty much nothing.
When did the seriousness of your condition really sink in?
In 2010, because I kept retaining fluid and having to go into the hospital; I was in and out of Summit Hospital seven or eight times in 2010. Then in late May I went to see the original electrophysiologist who put my pacemaker in. She said, "You are in stage 4 heart failure and I have to send you to UCSF hospital for a heart transplant. You're going to see Dr. [Teresa] De Marco. Critical care is picking you up right now."
What happened when you got to UCSF?
Teresa De Marco walked into the room and said, "You know you need a new heart." For the next month, they did a bunch of tests and research and finally Dr. De Marco told me they couldn't get me a new heart in time. She had people from the mechanical circulatory support team come in and talk to me about getting a left ventricular assist device (LVAD.) I was so sick I couldn't comprehend what they were telling me. All I understood was I'm going to get the LVAD or I'm going to die. The LVAD saved my life.
What was the surgery like?
It was about seven hours. And when I woke up I was in pain; it felt like five MUNI buses were on my chest. Dr. Hoopes [former head of the Heart and Lung Transplant program], who put the LVAD in, said he gave me minimal painkillers because he wanted me to be aware of what I had in me. It took about a month for the pain to subside. Now they do things differently and patients are recovering in about a week.
What was recovery like?
I was in the hospital for 55 days, but I started to walk and to feel better after just a few days. I started to learn about the LVAD and educate myself more about it and about the process of recovery and what it was going to take. I ended up starting a web page for people with LVADs – it's called LVADInc & Beyond. There are now about 400 members.
Is it difficult to get used to having an LVAD?
It's overwhelming at first. You always have to have batteries and a backup sack with batteries. You wear the batteries in what look like shoulder holsters for guns, one on each side. There's a controller on your waist with a perc line coming out of it [a tube that contains the power cable for the LVAD] that goes into your right side. People often asked about the equipment, like "what are those — bombs?" I got so sick of people's questions that I found a way to wear all the gear under my shirt so that you couldn't actually see it.
Do you have to wear the batteries all the time?
You can't use the batteries while sleeping because they only have a 15- hour life, so at night you have to be tethered to a machine that keeps the LVAD going. But it all becomes second nature after a while. You can shop or play golf while on the LVAD. My son is a baseball and football player and we'd throw the ball back and forth. I was feeling good enough that I was able to walk three or four miles a day, uphill and downhill.
Were there any limits on your activities?
No heavy lifting. And swimming or water sports are off limits, because of the batteries. And I couldn't take a shower for six months. Eventually I got a shower bag — it looked like a laptop shoulder bag — that could hold all the equipment and keep it dry while I showered.
An LVAD is designed to keep someone going until they can get a heart transplant, but how long can someone live with one?
The LVAD is proven to last for up to 10 years. There are some people who have had LVADs for six or seven years and are doing so well they don't want a transplant. I was doing so well I wasn't considered a candidate for a transplant.
What's the biggest risk of living with an LVAD?
Infection. The perc line goes through what is basically an open wound in your side and you have to clean it every day to reduce the chance of infection. Still infection kills 60 percent of all LVAD patients. A year and a half after I got my LVAD I did something — I pulled my perc line, or twisted my body the wrong way — and broke the skin seal around the tube and I got a staph infection. We treated it with antibiotics for eight months. But then my doctor decided the wound needed to be debrided so I had surgery for that. The surgery left me with a hole in my side that you could have put a golf ball in. It was crazy! But my doctor said there was a 50-50 chance it would close back up around the tube. The hole did go away, but the skin wasn't sealing around the tube. In March, 2012 I went in to see transplant surgeon Dr. [Georg] Wiesenthaler, and he said, "Mr. Wade, I can't take the chance of an infection getting in there because that could be life threatening." So I started going through the tests for a heart transplant.
How long did you have to wait for a new heart?
Not long. On April 3, I got a message that I had been added to the United Network for Organ Sharing [which manages the national transplant waiting list.] And on the night April 27, the heart transplant team at UCSF called and said they had located an organ that was a perfect match for me.
How did you feel?
I felt relief because I was really scared about infection killing me one day. It was also emotional. I cried for about an hour in disbelief. My kids were in Manhattan Beach for my sister's birthday, so I called them and let them know what was happening. Then I got all my stuff ready and drove myself to the hospital.
Were you scared?
I wasn't really scared. I'd already had my chest cracked open. And through my LVAD website I knew a lot of people who had had heart transplants and they had prepared me for what was in store.
How did the surgery compare to the LVAD surgery?
Dr. Wiesenthaler did my surgery. It took 16 hours but I only stayed in the hospital for nine days. Two hours after they took out the breathing tube from surgery I was up and walking and did four laps around the intensive care unit. My recovery was pretty smooth, except that a week or so after the transplant I started thinking about the donor, wondering who he was and I started feeling kind of blue, like post partum depression. But I overcame that pretty fast.
Were there any special precautions you had to take after you got home?
Since you're taking anti-rejection drugs that lower your immune system you have to be really careful about germs. I had to wear a mask whenever I went out for about three months, though I think a year is recommended. I have bottles of hand sanitizer gel all over my house. I only drink filtered water. All my meat has to be totally well done, no pink in the middle and the only eggs I can eat have to be hard-boiled. I wear gloves when handling raw meat. I don't eat any sushi.
Are you able to be active?
I can walk; I can jog on the treadmill for 20 minutes — I haven't jogged since junior high school. At cardio rehab, I walk on the treadmill for 15 minutes, ride the bike for 15 minutes, do the elliptical for 15 minutes and the Stairmaster for 15 minutes. I do weight exercises, as well as stretches and cool downs. It's such a difference from a few years ago when I worried about whether I would be able to make it from the car to the front door.
Were you nervous about resuming activity?
I was nervous for a while. Once I started cardio rehab and knew how far I could push myself I started to feel more comfortable.
Do you follow any special diet?
I stay on the heart healthy diet. Every meal is usually 50 percent vegetables or fruit; 25 percent starch and 25 percent protein. I have oatmeal and berries for breakfast, a salad for lunch and for dinner, something like chicken and Brussels sprouts and greens. I stay away from sugar.
What kinds of medications are you on?
I take 105 pills a day. And it's really important to take the meds on time and not skip any. I take immunosuppressants, antibiotics, bone loss prevention pills, heart pills, blood pressure pills and steroids, though I am gradually reducing my dose. Because the immunosuppressant eat up all your electrolytes, 25 of those pills are just to replenish my potassium, magnesium and calcium. The steroids make you diabetic so for a while I also was taking insulin.
Do you have to keep going back to the hospital to get checked for signs of rejection or other problems?
Yes, but the number of visits is going down. I was getting blood draws three times a week, but now I'm now down to just once a week. I was getting weekly biopsies to test for rejection but now I only have to be biopsied every three months. I used to have to go to the heart failure clinic once a week and now it's every three months. I go to cardio rehab three times a week I've had no complications and no rejections. I'm doing very well.
Who manages your care?
It's all coordinated through the heart failure clinic. They're great amazing people. My care is coordinated by Ann Fukano, a nurse who manages post-transplant care. My cardiologists are Dr. De Marco and Dr. Liviu Klein.
How has this experience affected you?
You learn not to take life for granted. I'm so grateful that I got to see my daughter graduate from St. Mary's six weeks after my transplant. I got to see my other daughter graduate from high school and go to college. I got to go to all of my son's baseball and basketball games. I play golf every week. It doesn't get any better.
What are your plans now?
I just started Cordon Bleu culinary school. I want to put that training together with my baking skills and maybe open a restaurant or do banquet or cruise ship cooking. My ultimate goal is to open a bakery somewhere. I'm putting the medical stuff behind me and restarting my life.
Interviewed by freelance writer Susan Freinkel.
Advanced Heart Failure Evaluation and Therapies Program
400 Parnassus Ave., Sixth Floor, Suite A-6110
San Francisco, CA 94143-0118
Phone: (415) 353-4145
Fax: (415) 353-4166