Patient Stories
Patients come to National Jewish Health from around the world to receive treatment they can't find anywhere else, and we are grateful to the many patients who have shared their inspiring stories. It is our hope that their messages provide you strength and encouragement.
There's just something exhilarating about being outdoors.
I've always loved to hike, but once the symptoms began, my energy declined.
I've always had bronchiectasis due to primary ciliary dyskinesia, or PCD for short.
If the cilia are moving slower, that impedes on normal airway clearance. Each time you have an infection, inflammation occurs and scar tissues create a space where
bacteria and viruses love to hide out.
About 20 years ago, we walked together almost daily.
Because we lived on the unpaved road, I picked up a common bacteria that's found in soil.
It's called mycobacteria.
I became very sick.
I'm more susceptible to picking up bacteria because of the PCD.
Susan has struggled because of pretty significant pain.
I like to fix things, and I can't fix this.
One thing I've had to come to grips with is I would have to be on antibiotics most likely for the rest of my life.
Some of my favorite things to do is hanging out with family. I love going to the lake.
Cade is 15 years old.
He was just very active when he was four.
Something wasn't right.
At that time, we were introducing foods, and his body rejected everything that we gave him.
His skin looked like he had been burned.
We were not familiar with allergies, eczema, asthma.
He had the trifecta.
It was a constant battle to try to keep him from just tearing his skin to pieces.
It broke my heart.
It didn't look like Cade was going to be able to live a normal life.
We were seeing the chief of medicine at a hospital in Houston.
She was in tears. She said, this is the first child that I have not been able to help.
My wife asked her, what would you do if it was your child?
And she quickly responded, there is a place in Denver called National Jewish Health. We need to get you in there.
This is just like a friendly reminder to appreciate your body for the things it does, for the ability to eat, the ability to breathe.
Swimming and water polo were my sports of choice.
When you enter the water, the world goes silent.
I ended up getting recruited and had what I love to call my dream year, but unfortunately I really started to feel like I wasn't able to cope with my health issues on my own anymore.
It was pretty soul crushing.
I was quite sick and I did need hospitalization, and it wasn't really adding up until they found bronchiectasis on one of my CT scans, which is a thickening of the airways. And this can happen in CF.
What is cystic fibrosis?
The mucus in your body is dehydrated.
It is really hard to clear and it shuts down a lot of those organ systems because the mucus builds up and hardens over time.
My presentation of cystic fibrosis wasn't exactly textbook.
Unfortunately the local clinic did not have the expertise.
During several hospitalizations, I was prescribed cystic fibrosis medications that were extremely helpful to me, but unfortunately I was unable to get them prescribed to me at home because
I didn't have the formal cystic fibrosis diagnosis.
Her pattern was she'd go into the hospital, get treatments, feel pretty good, come home, and then start the deterioration all over again.
Ultimately, I had an episode of respiratory failure that ended up with me in the ICU.
They are not looking at my daughter.
This was life-threatening.
I reached out to the greater cystic fibrosis community. They said, without question, we need you to get to National Jewish Health and we need
you to see Dr. Jennifer Taylor-Cousar.
When Rachel arrived here, she wasn't actually being treated for CF lung disease, and so she was quite sick.
We at National Jewish have a very specialized test called Nasal Potential Difference Measurement, which looks at how chloride and sodium, so salt, go across the epithelium in the nose.
Immediately, that test was a strong and undeniable positive for cystic fibrosis.
I just met with a really, really amazing doctor who just saved my life.
CF was described as being a disease that only occurred in people who were white.
So when people present with the classic symptoms like Rachel did, people don't think of CF and that leads to misdiagnosis.
We really have to fix this at a system level so that people can relearn who actually can get cystic fibrosis.
At National Jewish Health, we see a wide range of adults who present with CF symptoms but have not been appropriately diagnosed.
We can make that diagnosis and provide the treatments they need.
Having that prescription in my hand was the biggest relief.
I went years without the ability to swim and to get little glimmers of that back more each day has been exhilarating.
We just cried as we watched her sail through the water.
It was really, really special.
I am in the right place and I have treatments that can help and there's hope that it can get better because today it just did.
For Susan, when she first came it was under the mycobacterial clinic.
She has two bacteria that are always present in her airways and then that leads to an inflammatory response and so this becomes a cycle of infection, inflammation and damage.
Dr. Lomash has discussed with me about a device to help clear out mucus matter.
The more mucus you get out, the more bacteria you're clearing.
This was a key component for her breaking the cycle of infections and why she hasn't been on IV antibiotics for two years.
We celebrated by going to Harpers Ferry, West Virginia and went hiking on a trail and it was exhilarating to be able to reach the top.
It was really special.
That was just a really encouraging time for her to be able to celebrate.
I want to be around for my family and soon to be granddaughter.
I can't be thankful enough for National Jewish Health for helping me to get to where I am
today.
Eczema with atopic dermatitis is a complex genetic disease.
Children get very itchy skin rashes that they're scratching constantly.
I recall Bethann saying, this is the worst case I've ever seen, but we know what to do.
For Kate, the basic plan with him, we call it soak and seal, getting him in water and then had to cover him for the wet wrap.
In a few days he had brand new skin.
It looked like a newborn baby.
The first day of kindergarten, I had my phone out the whole day waiting for my wife to call and say it didn't work and she didn't call me until that evening.
He made it.
He made it through school first.
I thought about National Jewish Health that day.
The hope they gave us, that was an incredible day.
We are now developing techniques to identify atopic dermatitis before it develops in babies.
And that's going to be very exciting because it will speak to the prevention of atopic
dermatitis.
It may also prevent food allergy and asthma.
Kate has been a patient of National Jewish Health for his entire life.
To see him get cured is just really exciting.
I'd like to thank National Jewish Health for their love and commitment.
It's made a huge difference in Kate's life.
It really isn't magic.
It's digging deeper, it's looking further, it's being willing to go the extra mile to find the answers.
We don't have any magic treatments that aren't available anywhere else.
It's really this detailed approach that's very unique at National Jewish.
I work at National Jewish Health because it's a place where you can focus on making the diagnosis and doing the research that changes people's lives.
It's not just a job for us, it's our passion.
It takes family, it takes friends, it takes a healthcare team like National Jewish Health.
To give us hope, to give us a path, that wasn't magic, that was a dedication, and that was love.
Not Settling for the Status Quo
Dov’s parents talked with an extended family member who had been exposed years ago to chemicals at work and was successfully treated at National Jewish Health. “He believes that without that hospital, his quality of life would be significantly different — he would need to live in isolation and be unable to live a normal social life,” said Kops. “So we made an appointment.”
Team of Doctors Joins Couple to Battle Lung Cancer
Researchers are evaluating strategies to combine immunotherapy with chemotherapy and to use it at earlier stages to further improve outcomes. They are also working to understand and prevent skin rashes, the most common side effect, which can be severe enough to interrupt therapy for some patients.
Joining Forces To Fight Deployment-Related Lung Disease
John Sepulveda arrived in Afghanistan in 2011 in peak form and proud to serve in the Air Force. His role was crucial, and he didn’t want to let down his fellow airmen, or his country. So, when he got sick less than a month into his deployment, he decided to tough it out. “That was the worst thing I could have done,” said Sepulveda.
Changing Gears and Adding Years: A Hot Rodder’s Recovery Story
In September of 2021, Cascio-Weldon got sick with what seemed like just a cold. When his symptoms worsened, he visited his local doctor, who informed him that he was simply dealing with post-COVID syndrome, as he had been infected a few months earlier. However, this wasn’t the case. “Come December, I just wasn’t getting any better. In fact, I was getting worse. My skin was gray, literally gray,” Cascio-Weldon said.
Thorough & Expert Care: Family Twice Blessed
Successful treatment of David Espinosa’s scleroderma inspired a return to National Jewish Health when 8-year-old Remy developed frightening episodes of breathlessness.
Teen Returned to Health
Mouhamed, now 14, spent his childhood as a healthy young man who enjoyed socializing with friends, playing football and spending time around animals. He showed no signs of serious health conditions – until late 2018 after returning from vacation in Algeria.
Searching For Answers
The second time Lillian Downs got COVID-19, she came to National Jewish Health. When infectious disease expert Jared Eddy, MD, saw Lillian before an antibody infusion, he realized that she needed a more extensive evaluation.
Rare Genetic Disorder Drives Precision Therapy
It got to the point that Jennifer Gleason’s 5-year- old daughter cried every time she had to leave her mother.
Looking Beyond the Lungs
Being knocked down by unrelenting breathing problems was not something with which Travis White was familiar. In his early 70s, Travis was living an active retirement, splitting his time between Austin, Texas and Incline Village, Nevada, when his breathing problems came about somewhat suddenly.
Little Body, Big Battle
What started with a cough and a runny nose, quickly became much more alarming for 17-month-old Ivan Paez’s parents. “All of a sudden he started wheezing, so we took him to a local hospital,” Ivan’s mom Crystal Medrano said. A chest X-ray was performed and Medrano said doctors told her “he just has a cough and will be fine.” Ivan was sent home, but by the next day, Ivan’s cough and other symptoms were only getting worse. He also began developing a fever, prompting a second trip to the hospital. This time, Ivan was diagnosed with croup. “They gave him a dose of steroids and then they sent us home,” Medrano states.
His Life…And His Choice
When Caleb Norder first tried vaping before his freshman year in high school, it seemed fun and cool. Everybody was doing it — kids in the back of the bus, in the school bathrooms and even in class.
Former Asthma Patient Runs 100th Half-Marathon for National Jewish Health
Fifty years after receiving life-saving asthma care at National Jewish Health, Kevin Buron
used his passion for running to raise funds for the hospital.
Finding Care for Sarcoidosis in My Own Backyard
When patients are diagnosed with rare or unusual health conditions, understanding what to do next or where to find care can be daunting. For Diane Wein, a globe-trotting married mother of one, it took a team of doctors at National Jewish Health to get her back on her feet.
Back in the Game
Last spring, eight-year-old Genesis Avila began waking up during the night struggling to breathe. Her rescue inhaler, designed to relax the airways and allow air to move in and out of the lungs, was not helping.
A Medical Team Fit for a Determined Toddler
Asher was born with congenital heart and airway defects – soft, narrow airways prone to collapsing, a hole in the heart and no pulmonary artery – the main artery that supplies his lungs with blood. His toddler-sized chest makes treating these conditions difficult. Doctors surgically implanted a pulmonary artery right after birth, but it pushes on his already weak airways, preventing them from staying open.
A Long Journey
Twelve-year-old AJ Salgado-Rael has been accustomed to taking health precautions for as long as he can remember. “He was three when doctors discovered he has XLA immunodeficiency,” Sabrina Salgado-Rael, AJ’s mom, said. XLA immunodeficiency is an inherited inability to make antibodies that help fight infections. AJ receives antibody infusions regularly at National Jewish Health to strengthen his immunity.
Finding the Answer
Correct Diagnosis of HP Leads to Life-Changing Treatment.
Dr. Silveira found herself becoming the patient. She developed a persistent, dry cough, shortness of breath and fatigue that no amount of naps, long nights of sleep or cutting back on work could cure. Eventually, her declining health hastened her retirement. “I loved what I did and didn’t have any plans to retire, but moving and shaking was not a possibility at the end of my career,” she said. “The fatigue just really slowed me down in terms of steam.”
Life Gets Back on the Green
Even over the phone, Michael Brown’s voice is a hypodermic of pure energy. Indeed, the first word neurologist Jinny Tavee, MD, uses to describe him these days is “ebullient.” But it wasn’t always this way.
