By Josh Saunders
A cystic fibrosis sufferer would be left struggling to breathe changing bed-sheets sheets is now taking on life with new lungs and is determined to try hike in every national park
Rima Manomaitis, 29, from Aurora, Colorado, was diagnosed with the hereditary disease at four-months-old after she struggled to gain weight and had overly ‘salty skin’.
In her teens, she was very active but watched as her breathing capacity declined due to her lungs scarring from infections causing obstructions and being able to clear mucus.
In 2015 she had to be put on oxygen when her lung function continued to drop, at one point it hit as low as 14% and she was hospitalised for months on end.
She received a double lung transplant on Mother’s Day in 2017 and since has been working to improve her breathing with rehab.
Using hiking as a way to help her lungs to get stronger, she’s now on a quest to hike in all 58 of the national parks in the United States, having accomplished three so far.
Rima, a graduate, said: “When my lung function was pretty low and it was harder to do stuff, it would take me longer to walk to class.
“I would leave class early so I would have time to catch my breath before another class began again and then even things like carrying groceries affected me.
“At the time even the simplest things like doing laundry or changing sheets were the biggest projects ever.
“While I was on the waiting list it was mentally and emotional draining, you can never have your phone on silent and at every phone call my heart would skip a beat.
“After receiving new lungs, you think you should be able to breathe extremely well straight after but that’s not the case.
“It’s very weird, but it’s not the best first breath, you have to work to get there – at first I was even getting breathless from talking and laughing was painful.
“It feels so good knowing I’m no longer waiting, I know others have to wait a lot longer though, so I feel lucky.
“I hike a couple of times a week, using it as exercise and now can work-out on my own time too in the gym.
“Hiking is especially hard due to the elevation, but I’ve always looked at cystic fibrosis as like climbing a mountain, so it’s a good challenge.
“My goal is to hit every national park in the US, I’ve done the Rocky Mountains, Sand Dunes and Arches.”
While Rima was younger, her breathing didn’t affect her as heavily, with her needing to take enzymes with all food, daily nebuliser treatments and chest therapy to help break the mucus in her lungs.
It wasn’t until 2008, when she started to have more difficulties which was when she had more hospital admissions, be less active and presented challenges during everyday tasks.
Rima said: “With cystic fibrosis, you have an excessive amount of mucus in your lungs, which makes it harder to breathe and causing a lot of infections due to bacteria growing in it.
“The more infections you have the more scarring, so your lungs function will go down in their ability to function, leading to the need for a lung transplant.”
When Rima was put on the transplant list in 2016, she would undergo two ‘dry runs’ – where she didn’t receive the new organs and due to fevers was put on hold four times
During the wait for new lungs, she battled crippling sickness where her oxygen needed increased to more litres per minute.
As well as needing IV antibiotics and fluids pumped through a porta Cath in her chest for ten months straight.
Rima said: “When I was very sick, I worried about the fevers as you cannot have a transplant if you have an infection.
“They had to take me off the list temporarily while I was on antibiotics.”
Rima received new lungs in 2017, and while she is grateful to have her life back – she acknowledges transplanted organs rarely last forever.
She said: “A transplant is not a cure it’s swapping one disease for another, I don’t have all the lung issues I had before but now still have my own set of challenges.
“This transplant won’t last forever, they can last from one year to 20 years, but I’m hoping mine will last for a long time to come.”
But now settling into life with her new organ, Rima’s hopeful for the future and thankful to her siblings Laima, 31, and Paul, 33, who helped during her recovery.
Having visited seven National Parks before her transplant, she has now been hiking to increase her lung capacity and continues to set herself more ambitious challenges.
Rima said: “Before my transplant I was always adventurous, wanting to do everything, and was always as active as my lungs would allow.
“Now I’m so grateful that now I can finally go hiking, camping and going on adventures once more that I have bigger goals.
“One of them is to climb a 14,000ft mountain this July and to visit all the national parks.
“I want to show people that even if you’re sick, you can still enjoy life.”
Follow her journey at: www.lungstoryshort.com