Kelly DiMaggio was born with HLHS. The first few years of her life consisted of open heart surgeries and procedures to increase her blood flow and oxygen levels. After successful operations, Kelly continued to thrive. Part I of Kelly’s story can be found here.
From 1996 to 2010, Kelly did well, only seeing the cardiologist annually and was even able to play field hockey in middle school.
“I couldn’t run,” said Kelly. “My oxygen levels have always been mid-80s, and for me that worked. They (doctors) didn’t want to put me on oxygen, I think because of the pulmonary pressures. They thought it would mess it up.”
Then, in Kelly’s junior year at Dickinson College in Pennsylvania, her health started to decline. “I just started feeling cruddy … I couldn’t pinpoint anything specific, but I always felt bad, so then it started getting to the point that I was constantly short of breath.” Kelly continued to feel that way, and when she couldn’t get in right away to see her cardiologist, her family sought another at the University of Maryland.
“We found that my saturation levels were down to the mid to upper 70s and … they thought something’s wrong,” said Kelly. Unable to figure out a diagnosis, Kelly continued on with her life with reduced oxygen levels and graduated from college in May 2011.
After college, Kelly thought she had found her dream job as a nurse. She worked three 12-hour shifts and then worked part time waiting tables at the same restaurant as her boyfriend, Mike. One day, in November 2011, Kelly began following Mike around the restaurant until she finally told him she wasn’t feeling well and passed out.
“She collapsed right in my arms, literally. I was holding her elbows and as we got through the door she collapsed. It was lucky that I was there because she could have hit her head, there are lots of shelves and a cement floor,” said Mike.
Once at the hospital, doctors ruled out arrhythmia, lung complications, heart failure and other serious issues, but they weren’t able to provide an exact diagnosis. “Since there aren’t a lot of older HLHS patients, they’re just kind of like something is wrong but we don’t know what,” said Kelly. In order to find out, Kelly was scheduled for an exploratory cardiac catheterization on March 16, 2012. The three-month waiting time until the catheterization was tough, as Kelly was still suffering from low oxygen saturation levels. It was also around this time that Kelly’s doctor suggested switching to a less physical career that wouldn’t put so much stress on her body.
On March 16, at the University of Maryland, Kelly’s expected three-hour catheterization lasted nine hours -- longer than any of her open heart surgeries. The doctors discovered that for decades Kelly’s body had been forming collateral vessels growing around her heart and her neck. The vessels grew as a way to compensate for her low oxygen levels, but they ended up causing more harm than good. To reduce the impact of the vessels, shock plugs and coils were inserted into the vessels. All of the procedures were done in the catheterization lab due to Kelly’s fenestration, or surgical opening within the heart.
“I was in the hospital only a night or two but it was just rough,” said Kelly. After the surgery, Kelly’s oxygen levels increased to 94, and she was actually pink. The rise in oxygen for someone who had never experienced such high levels before made her spacey until her body adjusted.
For some time, everything went well for Kelly. She began working for a financial services company, heeding the advice of her cardiologist to find a desk job, and she became engaged to her boyfriend, Mike.
Unfortunately, though, one day things changed when Kelly started experiencing a terrible pain in the back of her right leg. “I remember getting out of bed, and I could barely walk because it hurt so badly but naturally I was like, well I’ve got to go to work,” said Kelly.
“She is a heart warrior. She doesn’t ever complain,” added Mike.
Suffering through the agony of the pain throughout her workday, Kelly decided to go to the emergency room after work due to her suspicion of a possible blood clot in her leg. Mike met her there, and she was quickly prioritized due to her medical history. “Clots have always been a big concern because of the fenestration if they were to break off they would shoot pretty much directly to the brain, and there’s a high risk of stroke,” said Kelly.
Kelly not only had one blood clot but she had three in her right leg. She was soon transferred to the University of Maryland, and given blood thinners. It was during this stay that Kelly became very ill, possibly from a virus or an allergic reaction to one of the medications, extending her hospital visit to five or six days. Her health finally improved, but doctors concluded that Kelly will now have to be on blood thinners for the rest of her life.
“Because my circulation is slower and more passive due to the nature of the Fontan, blood thinners are forever as of right now. I still have clot damage to the vessels. I go through periods where my leg just really hurts,” said Kelly, touching her right calf.
“Personally, just to stand next to her every single day is a blessing, and I’ve learned from her mother and father that you don’t worry about it. You worry about it when something happens but … you don’t make it life,” said Mike.
The struggle Kelly faces day to day is hard and wears on her, although she doesn’t let it show. Her body is constantly in pain and, as of now, the doctors don’t have any answers for her. That’s why Kelly came to Mayo Clinic to participate in the ongoing research for patients and family members with HLHS. In addition to her physical struggle, there’s also an emotional toll to being one of the pioneers of HLHS and for what the future holds.
“I’ve been told that I can’t carry a child. After getting married, not that we want children right away, but it’s been more of a mental struggle the past year or so,” said Kelly.
“One thing that has changed us from a lot of our friends is, yes maybe we can’t have kids … but we’re traveling. In two weeks we are going back to where we went on our honeymoon in Aruba to celebrate our one-year anniversary,” said Mike.
Kelly and her family are making most out of each day, whether that’s taking trips with her husband to Jamaica, Aruba and California, or just making memories every single day. Kelly’s parents’ advice to others in similar situations is to try and treat your child like a regular kid and to not obsess about the things that may come. Kelly’s also confronting HLHS head on. “It’s becoming more of an identity but it’s hard,” she said. “I want to do as much as I can either through trials or talking to people.”
“She really is an extraordinary person in so many ways,” Stacy, a friend of the family, added.
We are truly lucky to have Kelly be a member of our HLHS family here at Mayo Clinic. Kelly, thank you for being such an inspiration!
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science, to diagnostic imaging to regenerative therapies.
Tags: ASD, HLHS, Hypoplastic Left Heart Syndrome, Kelly DiMaggio, Patient Stories, Todd and Karen Wanek Family Program for HLHS, Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome