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Gary and Dennis Thiel of Appleton, WI had no idea what was going on when they began experiencing shortness of breath in their early-to-mid 60s. Little did they dream that 2020, the year that COVID-19 turned life upside down for so many – would become the year that these two brothers would ultimately receive brand new hearts.
Gary, a 69-year-old retired UPS driver and one-time avid walker, vividly remembers when his stamina began to wane.
“I remember stopping my walk every 50 feet or so to catch my breath. It was scary and I became resigned to the fact that I wasn’t going to live too long,” says Gary, who has been married to his wife Diane for 42 years and has three grown daughters.
Breathing was also getting harder for Gary’s younger brother Dennis, 67. Shortly before retiring from his job as a forklift operator, Dennis remembers when a simple walk to his locker or the parking lot included multiple stops to catch his breath.
Cardiologists in the Fox Valley began treating both men for abnormal heart rhythms, but their symptoms persisted. It was difficult for doctors not to wonder if a familial condition might be causing both brothers to experience similar breathing difficulties at about the same point in life.
Rare genetic condition caused heart failure, leading to transplants
Ultimately, Gary, and later Dennis, were diagnosed with a rare, life-threatening and often under-recognized genetic condition known as transthyretin (TTR) amyloidosis. As this is a slow, progressive disease, patients typically have no idea that they have the condition until they are in their 50s, 60s or later. This disease can involve any organ system but is usually not diagnosed until symptoms from heart failure occur.
“TTR is a type of protein produced in the liver that is carried throughout the bloodstream,” says Dr. David Pham, a UW Health transplant cardiologist who specializes in cardiac amyloidosis. “In people with TTR amyloidosis, the TTR protein misfolds into amyloid fibril, so instead of flowing freely, it builds up in the heart, the nerves, the digestive system and other places in the body. Gary and Dennis started having breathing problems because TTR amyloid fibrils were building up in their hearts, causing it to thicken and stiffen, eventually leading to heart failure.”
Of the two major types of TTR amyloidosis, one is genetic. Because Gary tested for this type, doctors were able to diagnose Dennis more easily, and he also tested positive for the genetic type. Accordingly, the Thiels encouraged other family members to get tested for the genetic marker. Although they are the only two (of seven) siblings who developed heart failure, genetic testing revealed the marker is present in two more brothers, two of Gary’s three daughters, a niece and a nephew.
“Dennis and I are the only ones in the family who actually got the disease, so I guess we took one for the team,” says Gary in a classic understatement.
A lot to process in very little time
Three life-changing events transformed March 2020 into an unforgettable month for Gary.
On March 4, a biopsy confirmed the genetic amyloidosis condition that was wreaking havoc with his heart. COVID-19 effectively shut down much of the country just one week later and by the end of that month, Gary was put on the wait list for a heart transplant. Wait time for organs at UW Health’s Transplant Center are shorter than the regional and national average, and Gary received his new heart just three days after being listed.
“Gary did wonderfully,” says UW Health’s Dr. Amy Fiedler, his transplant surgeon. “He really sailed through the operation. During his recovery, he always had a smile on his face and was incredibly motivated to work hard and take good care of his new heart.”
Gary’s recovery included a few bumps in the road. Not being able to see his family members because of COVID-19 visitor restrictions added to his sense of isolation, but his nursing team stepped up to fill some of the void. After two separate hospital stays, Gary was able to go home.
Dennis received a new heart six months after Gary did
Dennis, who received his new heart about six months after Gary, had a rockier road to transplant. In July 2019 – nearly a year before his amyloid diagnosis – Dennis had a stroke. Casey, his 29-year-old son who lives with Dennis, immediately suspected trouble when he heard his father speaking incoherently.
Ten months went by before genetic testing confirmed that like Gary, Dennis also suffered from TTR amyloidosis. Soon, he was evaluated for a heart transplant, but those plans were put on hold once Dennis had a second stroke a year after the first one.
“My dad was in bed when I came in to say goodnight,” says Casey. “I found him totally non-responsive, and he was clearly worse than after the first stroke. Things looked pretty bleak, but luckily, the blood clot finally split off on its own into smaller clots and my dad survived.”
Dennis still wanted a new heart, but doctors wanted to be sure he would recover well enough from the stroke to survive transplant surgery.
By mid-September, Dennis was strong enough to qualify for a transplant and 25 days later, he got the call that a new heart was available.
“I remember driving to Madison feeling like a dead man walking,” Dennis says. “I was scared about the whole thing, but of course incredibly grateful that I was going to get a new heart.”
From the surgeon’s perspective, everything about Dennis’ transplant went smoothly.
“It’s always good news for the patient when the surgery is not especially memorable,” says UW Health cardiothoracic surgeon Josh Hermsen, MD. “Everything went very well.”
Their signature quality: incredible kindness
In addition to a skilled healthcare team and two generous donors willing to give the gift of life, a successful transplant also requires that each patient treat their new organs with a lot of TLC. Many on Dennis’ and Gary’s care teams recognize them for their kindness, gratitude and commitment in this regard.
Katie Csizmadia, a UW Health cardiothoracic surgery inpatient nurse, was genuinely touched when told that Dennis remembered her by name several months after his surgery.
“I still think of Dennis frequently,” says Katie. “He is so kind, inquisitive and truly committed to doing the hard work we ask of these patients. Knowing that I made a small impact on Dennis in his journey to recovery reminds me why I became a nurse. And if Gary is anything like Dennis, I’m sure he is also a wonderful person.”
Gary and Dennis are far better off than they were before their heart transplants, but both brothers are realistic about living with the other symptoms caused by their genetic condition.
“They probably would not have lived more than a few months without getting new hearts, but TTR amyloidosis, unfortunately, still remains in their bodies,” says UW Health’s Dr. Aurangzeb Baber, a transplant cardiologist.
Hoping to avoid kidney transplants
Their disease frequently affects the kidneys, and Gary and Dennis may one day need dialysis or kidney transplants if their already compromised renal systems deteriorate further. For now, thankfully, their kidney function remains stable and both men hope to avoid going through a kidney transplant.
Neuropathy, or nerve damage, is another TTR amyloidosis symptom impacting the two brothers. Pain in the legs and loss of sensation in the feet, for example, make it hard to walk and maintain a normal sense of balance. They also lack the stamina they had just a few years ago, which limits their daily physical activity. A new medication called Onpattro® is helping stop the advancement of the neuropathy, and doctors anticipate their nerve condition will stabilize and hopefully improve over time.
“Gary and Dennis are fairly early in their course of treatment,” says UW Health neurologist Michael Hansen. “There have been no major side effects and I anticipate they will continue to feel better the longer they are on the medication.”
Trying to stay as active as possible, Gary plays golf and mows his lawn while Dennis bicycles outdoors and uses a stationary bike in the house. They are both lucky to be alive and incredibly grateful patients.
“Gary and Dennis have been through a saga, but their incredible decency and kindness never wavers,” says Dr. Hansen. “Their positive outlook also should bode well for them in the long term.”