Daniel’s story began early, triggered by intuition and a family heart event. When he was in his twenties, his mother suffered a terrible heart attack; this was the first time he really started thinking about his heart health, as he knew heart disease ran in the family. “I remember checking my pulse and noticed I had an irregular heart beat. It sounded like it skipped a beat or two. But I felt fine, no symptoms, and I was a young guy, so I didn’t think much of it.” Daniel had just gotten married, and his wife encouraged him to get it checked out, nonetheless.
The first doctor Daniel’s saw told him, “It’s just the way you are, perhaps a heart murmur or something.” But that didn’t set well with him. “I knew it was something more, so I decided to get checked out by another doctor. It took two more doctors, but eventually I was diagnosed with cardiomyopathy, or an enlarged heart.” By this time two years had passed, and during this time his heart had further enlarged. Daniel’s cardiologist recommended getting a defibrillator implanted in his chest because he was at a much greater risk for a life-threatening heart event.
“I was still in mid 20’s, I didn’t want to do it, mainly because I felt scared and frankly unmotivated. But once again my wife, Kimberly, urged me to do so because this was my health.” When Daniel was 27 he had the defibrillator implanted, and for the next 20 years lived a relatively normal life, with only minor limitations. “I would get stress tests and echocardiograms and it was ‘status quo’ issues, like arrhythmia that arose here and there. But for the most part, it was normal.”
That all changed in the summer of 2014, during a camping trip. “We were high in elevation, I was walking up a hill, and really out of breath. I mean, I was so out of breath, and I could not seem to breathe. Even after I got to the top of the hill and had a chance to rest, I couldn’t catch my breath. It was strange. Then every time I would start to fall asleep I would stop breathing, all of sudden I had sleep apnea or something.” Daniel’s symptoms continued even after he got home, when he decided it was time to visit his doctor.
The defibrillator did more than just give Daniel peace of mind about his heart’s function; the defibrillator also recorded the heart’s activity. In this case the doctor could see that Daniel was in AFib, and had been for two months straight. He was admitted into the hospital where the cardiology team tried to re-set the electrical rhythm in Daniel’s heart by shocking him with paddles. This technique worked for 3-4 hours at a time, but then he would always go back into AFib. At this point, congestive heart failure set in, leading to swelling (both internally and externally), heightened breathing problems, and chest pain. The swelling was severe enough that Daniel had to make several trips to the ER to have fluid drained from his body.
Because the shocks weren’t working, Daniel’s doctor suggested ablation surgery to try and fix the AFib. “I had my surgery on Thanksgiving Day, 2014 and it stopped the AFib. I felt pretty darn good for the first time in months! We even went to Disneyland, and I felt great.” But not long after, new symptoms started, leaving Daniel feeling confused and frustrated by what was happening. “I would fall asleep doing something like watching TV, but when I woke up I’d have no memory of falling asleep. Beyond that, the defibrillator was now constantly shocking me.” Daniel was experiencing Ventricular Tachycardia, or “V-Tach,” which is a type of irregular, rapid heartrate that arises from improper electrical activity in the heart. Put simply, Daniel’s defibrillator was shocking him back to life.
“The V-tach is the scary stuff. I started getting shocked while I was wide awake, going to work or talking to my kids, and it would just shock me. I would go into V-tach even just going to bed, I had no control. It was like having a time bomb in your chest.” And at this point Daniel was constantly going to the hospital because Kimberly would find him unconscious. On Valentine’s Day, 2015 Daniel was in the ER, and the on-call cardiologist told him, “You may want to look into a heart transplant. We’ve done everything we can thinking of to do.”
“These days, with modern medicine and technology, you think there’s always a procedure or a pill or something that will solve the problem. I had never considered a heart transplant. I wondered, am I really that sick? But I knew if I was going to live then this was something I had to go through.” Daniel’s cardiologist told him, “We can start looking into this, and contact a transplant center to see if you’re even qualified.” Daniel would need to research transplant facilities, and he would need to go through a litany of physical tests to determine his eligibility.
To be eligible for a heart transplant, you must be physically healthy in every other aspect to survive the surgery. The process is long, complex, and there are no guarantees. “They tested everything including my liver, kidneys, teeth… It was several tests over many weeks. And you could wait years hanging out at home, because if you’re well enough to be at home, then you’re not at the top of the list.” Daniel’s doctors were also trying several things to get his heart stabilized including different types of medication and heart implants. But nothing worked. He was constantly in the ER, getting repeatedly shocked to keep his heart functioning.
Daniel’s situation had escalated quickly, and was becoming dangerous. “There was one incident where my cardiologist happened to be on call, and he witnessed the whole ordeal. He called UCLA [Daniel’s chosen transplant center], who life-flighted me down from my home a few hours north, to where I was going to stay until I got my heart transplant. The first few days I was in the hospital they finished all the tests, and I was eligible to get on the list. But I was getting sicker and sicker, and at this point I was scared to move because of being constantly shocked. Unfortunately they really want you to move!”
However, once a patient is on the transplant list, they don’t necessarily stay on the list. “If you get an infection, fever, or anything like that you get taken off the list. You’re in limbo. You’re moving up the list, then you get put on hold. I got put on hold due to medications affecting my liver. I was on hold for three weeks, then got back on the list, then two weeks later I got sepsis from a line, and then back off the list. It really messes with your head.” During one particularly harrowing experience, Daniel was awake for a procedure, but he couldn’t breathe. “As it got worse, I tried to take a breath and there was nothing. Suddenly there was a swarm of nurses and doctors around me, and then I woke up with a breathing tube.”
Daniel’s doctors informed him that he could not wait any longer for a heart, and they were going to have to implant an LVAD machine into his heart. The LVAD is a pump with tubes that go into your heart to circulate blood for you if your heart is too weak to pump anymore. It has huge batteries worn in holsters, and they’re only good for five hours at time. “You have to plug yourself in at night, and always have batteries with you. But I did feel better. Before this I had been too sick to eat, and now I started getting my appetite back.”
Daniel was kept in hospital for about a month learning how to recover and living with the new machine. Because of the LVAD he was downgraded from a 1A priority transplant status down to a 1B, and he was back at home waiting for a heart. “My wife and I had to live in L.A., about three hours south of our home. I have 3 teenage daughters, and my wife was juggling all of this and going back and forth. I couldn’t go home, so we had to rent a house close to UCLA. At this point I had no energy, and I spent about 20% of the time in a wheelchair because I was so tired.” According to Daniel’s cardiologist, his “heart was mush.”
Daniel was alive but had no real quality of life. He tried to go back to work, but by February the V-tach started up again, and he was feeling horrible. After one episode where Daniel had been in V-tach seven hours straight, his cardiologist called UCLA. They told him, “We want him down here tonight in the ER, and he’s here until he gets his heart transplant.”
“It was really hard; My girls had been alone a lot, and my dad, who’s 89, moved in with us. My 17-year old was running the household. But we had to go back down that night, so we went to the ER and got checked back into the hospital. And I was put back on list at 1A status.”
On March 13 of 2016, Daniel was lying in bed when the cardiologist came and told him, “We found you a heart.” Up to this point his condition had deteriorated so rapidly that he had not expected to make it to this point. “I wasn’t even nervous. I decided If I die during surgery then at least I’ll be out. I wasn’t scared.” On March 15th Daniel underwent his heart transplant surgery. But he didn’t wake up until two-and-a-half weeks later. Daniel’s transplant went fine, but his heart wouldn’t start. He went into renal failure, liver failure, respiratory failure, and had to go on life support to stay alive, including 24-hour dialysis. “UCLA said this happens to 4-5% of people, and only two people have survived it: me and one other guy.”
Daniel’s family was prepared to say goodbye to him. The transplant team told them that they did all they could for him, and now he was in God’s hands. “My dad came down and said goodbye to me. But the next day I started to come around, my heart started to work.” The cardiologist told my family, “He has fallen off a cliff and grabbed branch, and it’s now up to him to pull himself out.”
Daniel woke up on Easter 2016, and tried to communicate with his wife through writing, as he couldn’t speak. Had lost 50 pounds in only two weeks, dropping from 190 lbs to 140. “I couldn’t move, I couldn’t sit up, move my arms, or anything.” Daniel was still on dialysis, but his heart was working, and he would now have to learn how to do everything over again.
“Once I finally got the [trach] tube out of my throat, I was able to start learning to talk again. The nerves in my tongue were damaged, so I had to learn eat and swallow. I worked physical therapy, was on a liquid diet, and it took me three weeks just learning to walk again.” By May 1 Daniel could leave the hospital, though he couldn’t leave L.A. because he had daily medical appointments. But he was now on the road to recovery.
“This was my daughter’s senior year in high school, and I missed her whole year. Before the transplant my goal was to see my daughter graduate on June 3. On June 1 the transplant team released me, and I was able to see her graduate!”
Since the transplant Daniel’s health has continued to improve, and his outlook on life has changed. “I used to be a workaholic, I missed important events and sports games for my girls, that kind of thing. I had to get my priorities straight. At the end of the day the only thing that matters to me is my family and my health.”
Daniel’s family has grown closer because of this experience, and they now seek out opportunities to help people going through what they went through. “I often go to UCLA to spend time with people on the transplant list; It’s easy to feel hopeless, but it’s encouraging to see other people who have gone through this and gotten better.” The family are also Ambassadors for Donor Network West. “We go to events with them, did a radio show, speaking engagements, and got a booth at farmer’s market to spread the word about the benefits of organ donation. I feel like I have purpose now, for the first time at age 47!”