NEW LENOX – The respite has ended, said Kristy Strilko of New Lenox.
Kristy is referring to the times between March – when her husband Robert received a device to help his oversized heart pump blood – and Aug. 27 – the date Robert will learn if he is a good candidate for a possible heart transplant.
So far, Robert is doing well.
“I’m able to get up and move around a lot better,” Robert said. “I’m not running out of air and I have a lot more energy.”
That wasn’t the case a few months ago. Robert has dilated cardiomyopathy – an enlargement of his heart’s left ventricle. Without assistance, Robert’s heart only pumped at 10 to 20 percent of its capacity, Kristy said.
That left Robert with a host of symptoms: water retention, breathing difficulties, fatigue and memory loss. He received a pacemaker and defibrillator in December 2012. In March, an LVAD, or left ventricle assist device, was installed to enhance the pumping capabilities in that part of his heart.
The goal, Kristy said, was improve Robert’s health enough to make him a candidate for a heart transplant. So far, it’s been mostly good.
Robert has spent the last few months losing 30 pounds, building up his strength and in counseling, all necessary steps for placement on that transplant list, he said. Kristy also has undergone counseling, she said.
Most recently, Robert had a dental exam and blood work, to screen for additional infections, disorders or diseases.
“If they find cancer or any other condition,” Kathy said, “he can’t go on the heart transplant list.”
Overall, Robert has enjoyed his summer, the first time he’s spent any extended time with his daughters – 11-year-old Hannah and 9-year-old Shanna – since he was always busy working as a paint technician when he was healthy. Mostly, he would take them swimming, his favorite summer recreation, he said.
This year, wearing the LVAD device prevented Robert from swimming. But he could – and did – play board games, go on short vacations and just hang out. He probably will never return to work, he said, but that reality no longer bothers Robert.
“To tell you the truth, I just want to continue enjoying life,” Robert said. “I was quite the workaholic for many years and I put everything else on the back burner. I’m rather enjoying spending time with families and friends.”
Life before the LVAD was a series of health scares: extreme breathlessness and edema due to the ineffective pumping of the heart and fainting from irregular heartbeats. Since the LVAD, Robert has experienced only two health blips, Kristy said.
The first was Easter Sunday, when he was accidentally served caffeinated coffee in a restaurant, Kristy said. The caffeine caused supraventricular tachycardia, meaning Robert’s heart was beating dangerously fast.
The second happened in May when the LVAD’s drive line became infected. The solution was an hour-long infusion of intravenous antibiotics three times a day. A portable pump meant Robert could receive those antibiotics on-the-go, keeping him mobile and with his family.
“Those are our adventures,” Kristy said. “We haven’t had any more since May, knock on wood. Our new adventures are the workups for the heart transplant.
Just because Robert’s health is stable doesn’t mean the challenges are gone. He still has more pounds to shed. His illness has affected the family in multiple ways and they are doing their best to cope. Shanna is the optimist; Hannah is struggling, Kristy said.
As the adhesive holding the family together, Kristy struggles to balance work, Robert’s care, her daughters’ well-being, and her own see-sawing emotions at a routine that’s upside down and life plans indefinitely halted. Sometimes, Kristy feels isolated in her grief, as most of the well-meaning concern is directed at solely at Robert.
“I think I have a little PTSD,” Kristy said.
And that’s not even addressing outstanding medical debt. For instance, Robert’s portion for a helicopter ride for an emergency hospital transfer is more than $10,000, Kristy said.
Still, she said one upside to Robert’s illness is that he's addressing his long-standing fear of death, a fear so strong, he would never allow Kristy to discuss her end-of-life wishes, she added.
“Even if I get a heart, there’s no guarantee that it’s going to last, and I have to understand this,” Robert said. “When we first went into it, I honestly didn’t handle it too well, but now I’ve come to the point where what’s going to happen, is going to happen. There’s nothing I can do about it.”
DONATEHelp the Robert Strilko family by visiting gofundme.com/helpingheartsforrobert or mail donations payable to Robert Strilko Benefit Fund, First Midwest Bank, 3737 W.147th St., Midlothian, IL, 60445