Scleroderma in the media
Squamish woman breathing easier, literally, thanks to recent lung
Beth Miller is an inspiration, says friend
Squamish Beth Miller is hoping to be back on skis soon, deep breathing alpine air for the first time in years.
A long-time local teacher and former president of the Sea to Sky Teachers’ Association, Miller, 53, is recently back home after a
lung transplant this summer.
Miller was diagnosed with the autoimmune disease scleroderma in 2006.
Sometime in 2010, she noticed it had impacted her lungs to the point she would become very out of breath doing pretty much
Around 2012 or so, she had to give up skiing.
“That is one of the things I am really looking forward to is getting back onto my skis,” she said. “I used to volunteer up on the hill as a mountain host, giving tours on the weekends. That was one of the first things to go.”
She continued teaching until four years ago when she developed pneumonia.
“I ended up on oxygen full time and had to stop teaching,” she said, adding it is about that time she was approved for a lung transplant and became active on the list, waiting for a donor.
At first, leaving the profession she had spent most of her adult life devoted to was tough, she acknowledged.
“I did, for a while, lose my sense of purpose. Like, ‘What am I here for.’ I had to get used to the idea I was living a very selfish existence. My purpose was to keep myself as healthy as possible so that a lung transplant was successful.”
For the intervening years, before a set of lungs became available, she kept busy with, among other things, gardening, socializing with friends, and a local Tai Chi class.
It was in Tai Chi that Ken Perry met her, about three years ago.
“She caught our attention in class, coming with her own oxygen bottle strapped to her back and coping to learn a new art with the extra weight bearing down on her,” he told The Chief.
“During this time, she always was eager to learn and improve her skill set. She impressed many in the class, as she never complained about her situation, but dealt with it in a very matter-of-fact manner.”
Her ‘can do’ attitude was a good example for all, he added.
When an appropriate set of donor’s lungs were available, it was go-time within hours.
She was heading out to a party on July 30 when she got the call that she needed to head to Vancouver General Hospital, where all lung transplants in B.C. are done.
“I was just about to head out the door with the sangria that I was taking and I get the call,” she said, with a laugh.
She was the twenty-second B.C. person to get a new set of lungs this year at VCH, she said.
There’s a bit of mental gymnastics that you have to go through to come to terms with the fact that you are getting a new chance at life, because someone else has died, Miller said.
“It is humbling,” she said, her voice cracking with emotion. “It is such a huge deal… It is something we all deal with. We understand that one of the best days of our life is the worst day of someone else’s and of their family.”
Miller is part of a Facebook page for lung transplant patients in B.C. and she said that is a good support network for sharing feelings and information.
She said she has devoted herself to taking as good a care of her new lungs as she can.
“I’m so grateful for the generous stranger who saved my life,” she said, in a follow-up email to The Chief.
The recovery process has been relatively smooth. Her parents came out from Ontario to be with her. After five weeks in the hospital, she moved into a vacation rental across the street from the hospital so she could go back and forth for treatments and appointments.
She moved back home to Squamish for good on Oct. 30.
The most difficult challenge has been the feeding tubes put in due to complications from scleroderma, Miller said. She was fed exclusively through them for three months.
“They opened my chest and put two new lungs in me — no problem. But two weeks later they do a little laparoscopic procedure where they put two tubes in, one in my stomach and one just on top of my small intestine, and my goodness, you think I had been in the wars or something. It was brutal.”
She said she wasn’t hungry because she was too nauseous.
She got back on regular food recently.
Toast with butter and homemade peach jam was the first thing she ate.
“It was the most beautiful piece of toast I have ever had in my life,” she said.
Though she said, for the most part, she is feeling pretty normal these days, those feeding tubes are still inserted, so she hopes to get those out soon.
The COVID factor
Miller said that the pandemic has made it less odd that she has to wear a mask everywhere than it would have been pre-COVID.
And being in the hospital and isolated while most people she knows were also having to limit their activities, was also a nice coincidence.
“When COVID first hit, everyone was checking on me a lot to make sure I was OK. And I was like, “Look, hey guys, I have been preparing for this for the last three years. I have been mostly homebound anyway.”
For Perry, her story serves as a bellwether for others.
“Her story is both inspiring and some good news during the current turbulent times,” he said. “I think it gives us cause to examine our own individual situation compared to someone who has learned to cope with something, which is so extreme, it requires double organ transplanting.”
As for the future, currently, Miller is focused on small personal goals.
“I would really like to get up and have a ski day this winter,” she said. “I want to stay healthy.”
(To find out if you are registered as an organ donor, the transplant donor registration page is here.)
Annual fundraiser for scleroderma goes virtual in era of COVID-19
North Van resident living with rare disease speaks about lung transplant
Ben Bengston / North Shore News May 28, 2020
Despite a global health crisis which in serious cases is known to cause shortness of breath, one North Vancouver resident is breathing a little easier these days.
Cecille Soriano is coming up on the one-year anniversary of having received a double lung transplant.
“Health-wise things are going really great,” Soriano, 29, tells the North Shore News. “I still have quite a few appointments and check-ins, but the year mark is quite a big milestone and once you hit the year mark you can start to get ready to go back to work and the restrictions are a little looser.”
Soriano received a lung transplant due to complications caused by the disease scleroderma, a rare autoimmune condition which affects roughly four out of every 10,000 people, according to the North Vancouver-based Scleroderma Association of B.C.
The disease affects people differently, but is generally recognized by a hardening of one’s connective tissue starting with the skin and blood vessels, and eventually can affect vital organs such as the lungs.
Soriano first noticed symptoms of the disease emerge while on a backpacking trip through Europe when she was 19.
“I had noticed my skin … had patches that were dry, almost like snakeskin,” Soriano told the North Shore News last year.
After receiving a diagnosis of scleroderma, Soriano lived with the condition for years until it progressed to the point where it started to affect her lungs.
Soriano says she was lucky to not have to wait long for her transplant and has been amazed at how quickly she’s been able to get back to some of the things she loved doing prior to her lungs starting to fail.
“I find everyday there’s new things i”m able to do again,” she says. “It’s just basic things: I can take the dogs for a walk and not have to take any breaks. I can actually run again, which is something I haven’t been able o do in years.”
While she continues onwards in her own journey with the autoimmune condition, she’s also intent to keep supporting the organization that has helped her immensely with the physical and mental struggles she’s faced throughout the past decade.
The Scleroderma Association of B.C. aims to support those living with the disease as well as raise money for research.
“If there’s somebody else out there that is going to be helped by finding this cure an if they can live their life a little bit better and not have to go through this kind of surgery, then I’m going to do whatever I can,” says Soriano, who first connected with the organization years ago shortly after her own diagnosis.
Due to the ongoing COVID-19 pandemic, the organization’s annual Ride for Research – which in past years has involved a 30-kilometre bicycle ride up to UBC and has raised to date more than $165,000 for scleroderma research – has had to go virtual for the month of June.
From June 1-29, the virtual fundraiser encourages people living or affected by scleroderma – if they are able – to go for a walk, bike ride, run, hold a virtual family activity or do some relaxed stretching at home.
Participants are also encouraged to donate online as well as take photos of their activity which can then be shared with the organization or tagged on Facebook.
The goal is to raise approximately $30,000 for scleroderma research.
“We’re still encouraging people to do something active, whether that be going for a walk, or going for a ride, and of course following social distancing guidelines,” she says. “Throughout June we’re going to be sharing photos of everybody’s rides and walks.”
Since receiving her lung transplant, Soriano is no longer required to use an oxygen tank. Although people living with an autoimmune condition are compelled to be extra careful in the era of COVID-19, Soriano has adopted her usual upbeat attitude when it comes to living with a rare disease while a global health crisis continues in tandem.
“In one sense, I was lucky because I’ve basically been quarantining for a year already. I’m used to staying home,” she says. “I was lucky that the staying at home didn’t affect me as much.”