It’s not magic. It’s National Jewish Health | 2024 Annual Video
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.