Hattie Dunstan thanks donors for giving her a new lease on life
The life of Hattie Dunstan has been quite the story.
Twenty-three years old and she could have a book written about her life.
Fortunately, for her family, her friends, jewelry lovers, organ transplant patients, and the rest of the world, that book can be put on hold.
This girl’s got way more chapters to write.
Dunstan’s story came perilously close to its end last summer. At 22-years-old, a lifetime battle with Cystic Fibrosis (CF) culminated in lung function levels that dropped to approximately 10 per cent this past July, a placing on an emergent transplant required list, and a double lung transplant on July 5.
On Jan. 11, Dunstan had her six-month assessment and received a thumbs up. The time period is a large barrier for transplant patients. She has been given permission to travel outside of Canada. Her drug regimen has been reduced. She no longer has to do masks, using a mask nebuliser to encourage the movement of mucus is a popular CF treatment, and other parts of her life are changing.
She has reached 53 per cent lung function. A seven per cent drop from her peak of 60 per cent, but still a positive change for a girl who has never had 100 per cent lung function.
“There’s other things too,” she said. “I just feel better. I used to have aches and pains in my body all the time, and I don’t now. I’ve gotten better. It’s so nice. And after a year you’re supposed to be even better, which I’m pretty excited about.”
The drop of seven per cent adds to a concern that she could face problems with infection, or rejection. Both sound dire, but both are treatable. In fact, she dealt with rejection three weeks out of her surgery.
“They pumped me full of IV steroids,” she said. “I can remember this doctor standing over me and saying, are you scared by the word rejection? And rejection alarms went off in my head. I thought, oh well, this didn’t work out. But yeah, it’s treatable. They didn’t do a great job of explaining that to me.”
Her doctors are her lifesavers, and Dunstan cherishes every breath she takes now, but for other transplant patients, for those about to enter a similar situation, her ordeal did inspire some ideas of what she could lend to their experience.
“Until I heard things from other transplant patients, it’s nothing but mystery,” she said. One of those, you’ve got to do it to really get it things? Absolutely.
“Nobody can tell you what it’s like,” she said. “No matter how hard they try.”
She spoke to other patients, other CF sufferers through blogs, e-mail, texting and the old-fashioned phone call. She wondered if the pain she was feeling after the surgery was worth it? If the struggles were normal?
“Was my head supposed to be this foggy?” she said. “I didn’t know. And even if they try, doctors just don’t reassure you. But then I spoke with another girl who had just gone through transplant, and she said, ‘Yes, I felt that too. It’s normal.’ And I felt like okay, someone else has done this. It’s okay.”
Dunstan imagines creating a written resource for transplant patients. A piece of material that will describe some of the experiences she found most difficult, and help with the littlest of things you wouldn’t imagine are a trial until you’re going through them.
“We had to do all the research ourselves. Where to find walkers, or even things for the bathroom.”
She imagines the creation of a transplant house in downtown Toronto. Her fundraising skills, and those of her close friends, were put to the test this past summer as ‘Hattie’s Crew’, a group of girls led by Kim Alderdice, Rachael Grice, Lindsay Bishop and others, organized car washes, bottle drives, fashions shows and more that raised approximately $40,000 for CF in Canada.
Now they want to put those skills into the larger project of creating a home for transplants patients so that others don’t have to search for accommodations or resources the way she did.
Dunstan is 23, she has a new lease on a life that has been weakened since her earliest years. Why doesn’t she just focus on Hattie? Why does she now want to spend her time giving back?
Does she feel an innate guilt over how she received her lungs? Yes. It’s something she can’t help.
“I guess…. I don’t want their lungs, their death to have been in vain,” she said. “I don’t know if I feel there’s anything in particular I’m supposed to do, but you’re just so happy, and meanwhile know that someone is so sad.
“I think about what my family went through. I can still see my brother holding my hand and crying when I was going into my operation, and I made it. Somewhere somebody didn’t make it, and that’s why I got lungs. It’s weird.”
She has a theory that her donor is a man. Under 29. She wrote what is known as a donor letter. A thank you to the family that made the preparations to see the organs of their lost family member save a life. But she hasn’t made it through the screening.
“I wrote it and it got sent back,” she said. “I put too much about myself in it.”
The letters are screened twice. Donor recipients aren’t supposed to include personal information for security reasons. The medical system doesn’t want families interacting with families when there could be the possibility of hard feelings.
Dunstan has a different vision.
“I wrote it trying to say thank you,” she said. “In an ideal, perfect world I would love to make contact. I think about a story I heard about a man having dinner with his donor family, the mom asks if she can just put her hands on him and feel her daughter once more. I think about that, and I would love to give them that opportunity. But I understand why they’re careful. They don’t want the family to come back at me and expect something from me.”
But everyone can expect something from her. Expectations are bred when the subject is so dedicated, and so inspirational. And Dunstan is that in spades.
In many ways she is a cliché.
She is a girl who loves fashion, and because of that makes jewelry, reads fashion magazines and dreams about couture dresses. But how many of those girls would launch a successful jewelry making business at 16 years old? How many would continue their dreams during a life threatening disease? And how many alter their own dreams to begin focusing on the betterment of others?
Dunstan does. And she continues to write those chapters.
And we keep reading.
Maybe it is us who owe her the thank you.
Check out her jewelry at www.gothattitude.com.
Learn about Cystic Fibrosis, and how you can donate at www.cysticfibrosis.ca.
And follow Dunstan’s daily journey at www.icecreammaplesyrup.blogspot.com.
