Photo: Daniel Hajek
By Matt Petrero
The next time you want to make an excuse for why you can’t or don’t want to workout, think about Nick Toledo, Jr. For almost seventeen years, Toledo suffered from a heart condition not brought on by anything he did or didn’t do. He was active his whole life, but in 1987, he contracted a viral infection that settled in the left ventricle of his heart, creating a condition called cardiomyopathy, which is a swelling of the heart.
“I never had any heart problems before I caught this viral infection,” Toledo said. “Basically it’s like a flu because I had all flu-like symptoms; the coughing, the sweats, the fever…but it just wouldn’t go away. My body didn’t have the resistance to fight that.”
Though Toledo thought it was the flu, it never got better and he ended up in the hospital.
“I’m part of a heart transplant support group here in Southern Nevada and half of us in there, our original diagnosis for our need for a transplant was a viral infection,” the 60-year-old southern California native said.
From The Road To The Operating Room
Toledo played high school football and then after he graduated, he stayed active.
“I played high school football. After high school, I kept active,” Toledo said. “I rode a bike for organized bike rides and I did a little jogging. That was back in the 70’s and 80’s when the jogging thing became very popular. So I was constantly active.”
He would regularly partake in the Solvang Century Ride. This almost perfect loop around Los Alamos, northwest of Santa Barbara, consists of a lot of hill climbing. At first, the cardiomyopathy did not deter him from maintaining his active lifestyle even though he knew that he would eventually need a heart transplant. Initially, the doctor’s plan was to monitor his condition so he could continue to do the things he loved, as long as he listened to the signs his body were sending him.
By 1991, Toledo’s heart function (pumping and distributing blood throughout his body) was down to 90%. However, he spoke to his doctor about something that was on his “bucket list” — running a marathon. The doctors gave him their blessings, but again, told him to monitor his body. By a combination or jogging and walking, Toledo completed the Ocean County Marathon the same year.
Toldeo would have three open-heart surgeries over a six year span before he received his new heart. By winter of 1998, with his health deteriorating, he would have to go in for his first of the three surgeries — a heart valve replacement.
(Nick Toledo doing one of his favorite things; paddle-boarding. Photo courtesy of Nick Toledo)
Five years went by, and eventually Toledo’s heart function was down to 10%. He could not even walk a flight of stairs without getting winded. Mind you, this was a man who routinely rode 100-miles on his bike, ran a marathon, and stayed active most of his life. His conditioning was always nearly at its peak.
In December of 2003, Toledo went in to have a catheter installed.
“I got the valve-replacement in and about five years later, I was at a point where my heart had swelled up so much that it wasn’t functioning,” Toledo said. “I went in for a clinic visit and they were going to do an invasive examination, which is called a heart catheter. I was in the cath-Lab to measure the pressures in my heart, how much blood was pumping, the volume, the rhythm, etc. I went in mid-December and the doctor in the lab said, ‘You can’t go home. Your heart function is about 10%, we can’t let you go home.”
Next was the second surgery in the process. This was to equip Toledo with an LVAD machine.
“It’s a Left Ventricular Assist Device. This is what former Vice President (Dick) Cheney had for a couple of years,” Toledo said. “It’s called a bridge-to- transplant. When your heart is doing so poorly that you need assistance, they put a machine (a pump like a fanny pack) around your waist. The one I had was the size of a suitcase. They put the pump under your rib cage, next to your heart and they have pneumatic lines coming out of the side of your body, into the machine. It helps you pump blood through your system.”
Toledo was still able to keep active, even after the LVAD surgery. In fact, he was told by his doctors prior to the surgery that he could still be active with some light yoga and walking. They told him to just keep everything moving inside of him. So he made sure that he walked about 45 minutes a day.
Surgery No. 3 was not far behind. While in recovery from the LVAD surgery, and still under anesthesia, the surgeons discovered that Toledo had some internal bleeding. There was only one thing they could do. As if he had not been through enough already, the surgeons came in and broke the news to Nick’s wife and P2P contributor, Cheri Toledo. They were going to have to go back in, find the leakage, and sew it up.
After successfully repairing the leakage, Toledo stayed in the hospital while he recovered and learned the workings of the LVAD, inside and out. That included being able to operate the pump manually in the event of a power outage.
“I was in the hospital for two weeks. They would not let me go home until I could troubleshoot it and pump that machine myself,” Toledo said. “So on January 1st, 2004, he was sent home with his LVAD machine. However, before leaving, he and Cheri were told by the nurses to not be surprised if he was to receive a call to turn right around and come back to the hospital for more surgery.
Finally…A Heart
What the nurses were implying to Nick and Cheri was not that they expected more problems with the LVAD, but that it was the time of the year when a lot of organs become available.
Based on the fact that it was New Year’s Day, and just hours after New Year’s Eve, there were a lot of drun driving accidents. While tragic and sad for the families who lost loved ones, this would turn out to be great fortune for the Toledos.
Two days later, the nurses’ words came to fruition.
“I get a phone call and it was the transplant coordinator from the hospital,” Toledo said. “He said, ‘Sit down, I need to tell you something…I thought I was going to go back in because they discovered something wasn’t done right during the LVAD surgery.”
That was not to be the case. In fact, the transplant coordinator was calling with news that Nick and Cheri had been waiting.
“She said, ‘I think we found a heart for you. Right now we’re going through tissue matches, blood types, antibody matches, and the preliminary results are that you’re pretty close to being a good match.”
An hour later, she called Nick back to let him know that it was a perfect match, but they had a 5-hour window for them to get to the hospital.
Fortunately, the Toledo’s were only 45 minutes away.
“What they do is coordinate the harvest of the donated heart and the removal of your own heart,” Toledo said. “So they start both surgeries at the same time.”
Two years prior, Nick and Cheri had moved from Southern California to the greater Chicago area to be closer to St. Francis Hospital on the campus of Illinois State University. What made the move even better was that Cheri was able to land her first teaching position at the university on the heels of achieving her doctorate. The last good sign for the Toledos was that in 2002, Illinois was the top state in the country in relation to available organ donation. They had convenience, sustenance, and supply to increase the chance of a successful transplant.
Nick spoke of an eerily ironic photo taken by his in-laws while he was being prepped for his new heart.
“I have a picture that my in-laws took from my hospital room. It was overlooking the helicopter pad. They saw the helicopter come in and the surgeons get off the helicopter with an Igloo cooler in his hand, and that was my heart.”
Nick still has the picture to this day.
Nick had no idea when he left the hospital on New Years Day that he would be back under the knife 72 hours later and hopefully, for the last time. Though scared and uncertain, he remained positive.
“Those three days were very scary, but my determination said that God would take care of me and this is happening for a reason,” he said. “It wasn’t for me to ask why but to keep going.”
After the transplant, the doctors put Nick on a ventilator. When he woke up, they came to check on him and see how his body was handling the new heart. The doctors would stop the ventilator for a minute and ask him to breath on his own. What they found was that his whole body was fighting the ventilator because the new heart beating in his chest was already strong enough to take over, and pump the blood and oxygen throughout his body on its own. Thus, he only had to be on the ventilator for 24 hours post transplant.
Once Nick was able to prove to the doctors and nurses that he could get up and walk laps around the floor on which he was staying while pushing the machines he was hooked up to, they would send him home. In time-honored fashion, his determination put him way ahead of schedule.
“When the doctors came in and asked, are you ready to walk around, I said, ‘watch me!’ I got out of bed by myself grabbed my machines, and I started pushing my blood pressure cuff and other monitors around.”
That was good enough for the doctors to send him packing and start his rehab only 8 days after receiving a new heart.
Time For A New Beginning
Once released from St. Francis, it was time for Nick start cardiac rehab. He expressed that even though he was walking around that hall, post-surgery, heart rehab was a scary time. When he showed up, they put leads on him and connected him to a heart monitor. He inquired as to why they were hooking him up to an EKG.
“They said, ‘We just want to monitor you in case something happens.’ I asked them to elaborate. They said, “We’ve had people who faint, who have heart attacks, etc.” Despite being a little frightened, Nick and those in his rehab sessions maintained a great sense of humor. They came up with a name for their group.
(Photo courtesy of Nick Toledo)
“We all called each other ‘The Zipper Club’ because we all had the suture marks in our chests.”
Besides staying as active as he could for the 16 years prior to the transplant, one of the other changes that Nick made once he got the news about the virus in 1987 was his diet.
“I was on the jock diet,” Nick said. “You play hard, workout hard, and then you go have a burger and fries or a steak and baked potato. You know a lot of red meat. I thought I could get away with that. I thought I was still young and I didn’t have any major health problems.”
“After I got diagnosed they said, ‘Now you need to look at your diet. Watch the salt, watch the saturated fat. You just can’t eat that stuff every day.”
Nick said that living in southern California, he and Cheri had friends who were vegetarians, so they helped set him up on a diet consisting of tempeh, beans, rice, and soy. However, he was not committed to the strict dietary code of a vegan lifestyle.
“I kind of converted to (almost) a vegetarian. I still like a smaller piece of meat once in a while.”
After the transplant, he was able to enjoy some of his favorite foods again in moderation because his activity level had increased dramatically from what it was the previous six years.
“After the transplant, I think my eating got better because I was able to play! After the surgery, I could go skiing again. I could ride a bike again. I could swing a bat and hit a ball.”
What About The Donor?
Nick’s story is one of inspiration that has a happy ending. Well, at least it is for Nick and his loved ones. The part of this story that often gets less attention is the person who passed away and in doing so, gave somebody else a new lease on life.
In this case, it was a 25-year old young man who lost his life on New Year’s Eve in 2003 in an auto accident. On the 10-year anniversary of receiving the ultimate gift, this young man’s heart, Nick Toledo wanted to meet his donor family. His hope was that in the time that passed, the wound would be healed enough for them to meet and he could express his appreciation and condolences to the family of the young man whose heart beats inside of Nick.
“I have made contact with my donor family through an intermediary organ donation procurement organization,” Nick said. “There’s anonymity sometimes where the donor family doesn’t want to know who the transplant recipient was. Sometimes the transplant recipient doesn’t want to know who the donor family was. So I wrote my thank you letter to the family and sent it to my transplant coordinator. She will forward it to the organization, who, in turn, forwarded it to the donor family.”
Unfortunately, Nick has not heard back from his donor family. I certainly understand the reluctance of the donor family to meet the recipient. I just hope for Nick’s sake, that he gets to thank them face-to-face for the gift he has received. The impact of the organ donation on the recipient’s family is not lost on Nick, who now lives in Las Vegas.
He said that it has had an effect on not only his family, but on Cheri’s family as well. However, the two have taken this experience and are using it for good.
“It’s just not my wife and I,” Nick said. “It’s her family, and my family who have been directly touched by organ donation. So I’m a big advocate here in Southern Nevada for organ donation. And I’m looking forward to, someday, my donor family contacting me back.”
Back in March, Nick and Cheri went to California for the Southern California Donate Life Run/Walk at Cal State–Fullerton University.
“This is an event that’s organized by Donate Life of California where transplant recipients meet their donor families. One of my friends here brings a stethoscope with her there and allows the donor family to put the stethoscope on and listen to her heart. It’s a tear fest. I want to do that with my donor family.”
From the time he was diagnosed with a virus in his left ventricle, to receiving a donor heart, to reclaiming his active life, and engaging in advocacy work, Nick Toledo has had quite the life over the past 28 years. He received a new lease on life and doesn’t take one minute for granted.
“I thank God for that gift of life every day. I’m able to work, play, and I have other goals in life because God has plans for me. I’m a grateful transplant recipient.”
And I’m grateful for having been given the opportunity to talk to such an inspirational and determined guy.
