April is 'Be A Donor' Month
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On April 27, Tillsonburg's Vanya Lang will celebrate the one-year anniversary of her heart transplant.
"Every day is a new day filled with gratitude to my selfless donor for her gift of life," said 43-year-old Lang, who was first diagnosed with a genetic heart condition at the age of 27, and battled for nsplayears until Feb. 11, 2014. Hospitalized at London University Hospital, she waited 75 days until a match was found."My husband was there. Pre-trant, my husband basically slept in the chair which turned into a bed. He'd bring his work clothes, go to work, and visit that night. I feel very fortunate because I had somebody with me almost 24-7.
"During my four months of pre and post-transplant in hospital I had the pleasure of meeting other transplant recipients," said Lang, who was surprised to see Tracy Edelman, another heart transplant patient from Tillsonburg, in pre-transplant physio.
"It is kind of rare... two from Tillsonburg at the same time," said Lang. "For us, I think it's a little bit more unique because we had eight other heart transplant recipients that were all in the hospital at the same time. I think there were four of us in April alone that got hearts. And we still stay in contact."
Edelman, who received her new heart in August 2014, had been living with an LVAD (left ventricular assist device) powered by a battery she wore around her waist several months before receiving 'the call...' they had a match for her.
"An LVAD is basically a heart that you wear on the outside of your body," said Edelman. "It's a pump that is inserted into the left ventricle of your heart, and comes out through your stomach. You wear a computer pack and batteries around your waist, and that's what runs the pump that keeps your heart pumping. It's used as a bridge, so I didn't have to stay in the hospital the whole time. I was able to get out and walk around."
Diagnosed with inflammatory breast cancer 12 years ago, Edelman and had to undergo six months of aggressive chemotherapy, and six weeks of radiation.
"Most breast cancers are painful – this one grew very, very fast, and it was very painful. Oh, it hurt so bad."
The chemotherapy and radiation had weakened her heart, and three years later, similar to Lang, she went into congestive heart failure.
Edelman had already been in the hospital for three months when she received her LVAD.
"The first time I was in the hospital, for three months," said Edelman. "I went in the middle of October, and came out just after the first of January, and my parents were there just about every other day. And my son was coming to see me, and he was bringing my grandson. My brother and my niece would visit..."
She said her family were major 'fighting' factors.
"I've got a 24-year-old son and a three-year-old grandson. It wasn't that long after Damian was born that everything went downhill for me. I had that artificial pump, but they had to build up my strength before they could even put that in. And apparently when they opened me up to put the pump in, they had to have a little pow wow as to whether they could continue. It was a lot worse than they had anticipated, they weren't sure whether I was going to make it through the surgery or not.
"But I did," Edelman smiled.
It was another seven months before she had the heart transplant.
"So I was lucky, I didn't have to be in the hospital another seven months. The pump enabled me to be able to come home and lead a relatively normal life until they could find a heart for me. It saved me from having to stay in the hospital, which is nice."
In Lang's case, she was ineligible for the LVAD, so she stayed in the hospital (75 days) waiting until a heart was available.
"Two very different, unique stories, but one common thing that's brought us together," said Lang.
"The same outcome," Edelman nodded.
SPECIAL FRIENDSHIPS
"We have forged a special friendship as we both faced impossible obstacles," said Lang, "but because of our community, selfless organ donors, medical technology and staff, we are here to give back.
"The community was very supportive to our family, lots of friends, they really rallied around us. That's why I love Tillsonburg. It's just a very community-oriented place to live."
The Tillsonburg residents hope to raise awareness during the month of April, which is designated Be A Donor Month by Trillium Gift of Life Network, and National Organ Donor and Tissue Awareness Week, April 20-25.
To help prepare, Lang attended a TGLN Advocate Summit in Toronto.
"It was very informative, as well as inspiring," said Lang, noting more than 85 per cent of Ontarians favour organ donations, however, only one in four Ontarians have registered to be an organ donor.
Lang remembers being in and out of hospitals with congestive heart failure, arrhythmias, and multiple heart attacks, leading up to a time when she was bed ridden due to her condition.
"You're thinking it can happen any minute, then the minutes go by. You know that somebody has to pass, that somebody is going to lose their mother or sister or brother or daughter. You also know that somebody has to give consent. So it's a mixed emotion knowing that you might die if somebody else doesn't die – that's a hard thing... You're excited, but you know that tragedy happens in order for you to live."
"Actually, I didn't really dwell on it as much," Edelman admitted. "I think because I had the pump keeping me going. Sure, I had to wear this big eight-pound machine around my waist everywhere I went, but other than that, I pretty much carried on a normal life. I got up in the morning, did my own laundry, went out for groceries, shopping, did almost all the normal things that just about everybody else does. So for me, I didn't dwell on it quite as much. Until the call came."
"With a selfless gift from a beautiful donor who took a few moments to check the donor box, my life changed forever," said Lang. "Today, I am able to ride my bicycle around Tillsonburg with my husband, watch my children grow up, travel to Cuba and put my feet in the sand (doctor approved), and exercise at least four times a week.
"I have my smile back, love life and most of all my need to continue to give back to the community. Tracy and I were given a second chance in life."
On Saturday, May 2, Lang and Edelman will walk together in honour of their donors at the London Transplant Trot, along with several transplant friends.
"We are blessed indeed," said Lang.
"The big thing is just getting people to consent, to sign their donor cards. But also to make sure they tell their family members that they have consented. It makes it a lot easier if the family knows what the donor's wishes were.
"That's kind of my drive now... I think it's kind of both our drives now... to raise awareness because here are two of us, in this small community of 15,000. And there are others. It's a huge responsibility. For me, that responsibility is making sure that I take care of myself, make the right choices, and also that I share my story."
"Two of us within the same year, from the same town, I couldn't believe it," Edelman smiled.
Why is donor registration important?
- The greatest loss of medically suitable organ donors is due to lack of family consent.
- Donor registration is the strongest predictor of family consent for deceased organ and tissue donation.
- The majority of families consent to organ and tissue donation when their loved ones are registered.
- Less than 50 per cent of families consent to organ and tissue donation when their loved ones are not registered.
With a population of 13.2 million, there are 3.1 million registered donors in Ontario – a 26 per cent registration rate. Six communities in the province have registration rates higher than 50 per cent, and no community in Ontario has a registration rate below 10 per cent.
There are eight transplant centres in Ontario, six tissue banks, and a waiting list of 1,500 people. There were 972 transplants in 2014, and 1,090 transplants performed in 2014.