Hoping for a change of heart: Cardiac patients looking for more government support

As two Botwood brothers grapple with failing hearts, they're hoping health support in Newfoundland and Labrador takes a beat in the right direction.

Tony and Craig Edison are in a fight for their lives, as they contend with a rare degenerative gene. The brothers, both retired paramedics, are on two sides of a life-changing procedure. Tony, the elder brother at age62, was the recipient of a new heart during an eight-hour surgery in Toronto earlier this year.

Craig, 59, knows he'll need a new heart in the futurebut is getting treatment at home in Newfoundlanduntil that time comes.

Both are calling for better support in dealing with medical services, and financial support for people needing transplants.

"Newfoundland don't have a co-ordinator and we don't do transplants in Newfoundland," said Tony, who will stay in Ontario for up to a year after his surgery. "I'm coming back home later on, I'm going to have to go see my cardiologist. But there is nobody from the co-ordination department that I can go to. So I've got no go-to person."

Tony discovered issues with his heart in 2002while working in the emergency department of James Paton Memorial Hospital.

"I went to turn on the lights in the main lobby of the hospital. When I turned back again, all of the seats in the lobby were just spinning. So I made my way back to emerg. When I got in the emergency department, I got one of the nurses to check my blood pressure. Blood pressure was good. No problem. When she went fora pulse, well, my pulse was 285."

He underwent a series of tests and was diagnosed with idiopathic cardiomyopathy as a result of a genetic condition. He was prescribed an implantable defibrillator, which triggers a shock to the heart when it's failing.

Tony continued to work, but the defibrillator kept firing.

"Every time you get [a] shock, you lose your licence for six months, so I've had mine gone a long time," Tony said. "I was shot 63 times with the defibrillator. My heart was going downhill fast. So [the defibrillator was] basically running to the point that it was the only thing that was keeping me alive."

In 2004, Tony responded to a call at the Gander airport, for a medical emergency aboard a flight. When he and his partner got the patient to the ambulance, Tony's job was to put in the IV.

"When I went to put the IV in, [my defibrillator] struck me 3 a.m. So I tried again and I said, 'OK, Tone, it's got to be done, we got a patient here.' And next thing I know, she struck me again and I just shook it off and I said, 'I'm going to try it once more.' And I didn't know nothing before she hit me again. And I knew then that was it. I couldn't do it no more.

"I ended up being diagnosed with PTSD because of not knowing when the next shot was coming."

In late August, Tony was referred to the Toronto General Transplant Clinic and was told he would be on the eligibility list for a heart transplant. He and his wife Jean packed up their belongings and moved in with Tony's sister in Toronto.

When Tony arrived at the hospital in Toronto, he was assigned to a social worker, nurse, nurse practitioner and financial co-ordinator. But, at home in Newfoundland, Tony said, there was no transplant co-ordinator, or enough financialresources to alleviate the costs and stress of the experience.

The bills startedpiling up to the point where Tony had to sell the family car.

"When people travel from Newfoundland to Toronto, [and] don't know anything about the city itself, don't know anything about the hospitals, it's good to have someone in between there that's a co-ordinator from one hospital to another," Jean said. "They often say, 'Well, who do we call back in Newfoundland?' And we didn't know who."

The Edisons were able to avail of the province'smedical transportation assistance program, or MTAP, to cover up to $3,000 in accommodations per month, as well as $43 per day for meals.

But hotels in Toronto, especially those in the downtown area, are not cheap, and even with the hospital rate, rooms are about $200 a night, said the Edisons, which totals more than $5,700 a month.

In early February, they received the call they were waiting for.

"When you get a call like that, you're happy," Jean said. "But at the same time, you're saddened because someone had to die so you could live So that day was a mix of emotions."

Tony recallsgetting into the hospital, going through the pre-op in preparation for the surgery.

"I was actually ... scared to death of what was going to happen next," he said. "And they gave me some medication. And when I came to ... my sister Sandra and Jeanlooked at my face and said, 'You have a new heart.'"

He said he's been feeling OK for the past couple months, but expects to be in Toronto for up to a year as his body adjusts to the new heart.

"I'm feeling pretty good," he said. "I miss my kids. I miss the grandchildren. I miss all of our friends. I can't wait to get back."

Tony is also thankful for the community help, because if it wasn't for donations from the community, they would not have been able to afford to stay and get the transplant.

'All of this takes a toll'

Back at home, Craig Edison is enduring the long, slow wait. Craig has the same gene causing the same heart condition as his older brother Tony. It was his brother's diagnosis that first prompted Craig to get tested.

"I have to travel back and forth to St John's every six months to see the cardiologists and then I got to see a neurologist once a year," Craig said.

"All of this takes a toll. I'm retired and I'm on a fixed income now. And traveling from Botwood now to St John's is, you know, a bit expensive, and you've got to go out and you've got to spenda day or so out there, spend the night in your hotel, which is all on your own personal expense."

Craig knows he'll be following thepath of his older brother and will eventually need a new heart.

"In a couple of years I'll be gone the same way," he said. "I'll have to make a decision: it's either my life or, you know, I'm going to have to probably put this home up on the market to sell to try to pay for some of the expense of going away and trying to get a new heart."

We need something for the patientsbeing seen with cardiac problems now.- Craig Edison

Craig is on his third defibrillator now. He's been lucky that he's only needed one activation since the first one was installed about 20 years ago.

"I can die suddenly with no apparent reason. I can just drop down and that's it.But I got some security on me, which is the defibrillator. At least I know if I drop down, I got a half decent chance."

Craig is hoping to see governmentsupportfor transplant patients improve over the coming years. He understands the reality of having to go to places like Ontario to receive the transplant itself, but is hoping the provincial health department, or the health authority, can make things easier for patients needing new organs.

"I know our health care is in dire straits and in crisis, but we need something for the patientsbeing seen with cardiac problems now," he said. "The cost of living is gone sky high."

The problem, he said, also extends to family members. Whatever a patient goes through is often experienced by a partner, Craig said.

"[My wife] is going through pretty well the same thing that I'm going through," he said. "She don't know [when]she wakes up in the morning that I'm going to be still alive."

Health authority responsible for co-ordination

CBC asked the provincial Health Department on March 15 for comment on this story. A week later, a spokesperson for the department said the request for information should go to Eastern Health. They were contacted on March 22, and responded with a written statement on April 6.

The health authority wouldn't comment on the Edison's case specifically, butacknowledged it is Eastern Health's role to co-ordinate with the transplanting facility and handle the required logistics. It also said the health authority should prepare the patient, provide the medical care and education required to maintain optimal health andsupport the necessary tests, procedures, and consultations.

The statement also said staff often assist patients through the application process for funding support such as MTAP and Hope Air.

"We understand these are challenging circumstances and appreciate the concerns being raised. Our priority is to provide quality care to our patients, clients and residents," reads the statement.

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