@drwill
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W. Hoh replied to the topic Late CF Diagnosis in the forum Adults With Cystic Fibrosis 5 months, 3 weeks ago
My son was diagnosed via newborn screening in 2008. I’m a physician but I had to admit I didn’t know much about cystic fibrosis because it was outside of my field of practice as a Public Health Physician
As I read about traits of cystic fibrosis; things like changes on chest x-ray, pancreatitis, infertility in males, Etc… I began to think of my…[Read more]
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W. Hoh replied to the topic Late CF Diagnosis in the forum Adults With Cystic Fibrosis 5 months, 3 weeks ago
My son was diagnosed via newborn screening in 2008. I’m a physician but I had to admit I didn’t know much about cystic fibrosis because it was outside of my field of practice as a Public Health Physician
As I read about traits of cystic fibrosis; things like changes on chest x-ray, pancreatitis, infertility in males, Etc… I began to think of my…[Read more]
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W. Hoh replied to the topic Caregiver Role Reversal in the forum Adults With Cystic Fibrosis 10 months, 4 weeks ago
As the parent of a child with cystic fibrosis and autism, you are right. It can be exhausting being a caregiver. But it’s a very rewarding experience also.
My wife is basically a saint, caring for my child throughout COVID-19 and caring for me after my spinal cord injury in the military.
Now you understand that caring for a loved one through…[Read more]
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W. Hoh replied to the topic Trikafta and conjunctivitis in the forum Trikafta: Triple Combination CFTR Modulator 11 months ago
I’m a physician board-certified and residency trained in occupational and environmental medicine.
What I say is based upon best available medical evidence.
What other people say is…
less authoritative.
And not all allergies are seasonal. Including pet dander and allergies to things such as dust (aka dust mite feces) and mold.
End of…[Read more]
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W. Hoh replied to the topic Trikafta and conjunctivitis in the forum Trikafta: Triple Combination CFTR Modulator 11 months ago
Hello,
I’m a retired physician who specialized in occupational and environmental medicine. I have a 14 year old with cystic fibrosis. And I have a lot of personal and professional experience with issues like this.it could be that you have allergic conjunctivitis due to an allergen in your environment. The fact that your eyes respond to the…[Read more]
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W. Hoh posted an update 11 months ago
@timb
A similar thing happened with my brother-in-law. He was 45 years old and the thinking was that people are either diagnosed by age 10 or they don’t have c f. I had to really push his doctor to test him.Double Delta f508
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We do have a lot of education to do. So much bad information about CF is out and about in the general medical population. This is just one piece. To all pwCF, their families and friends – keep teaching!
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W. Hoh replied to the topic A short horror story in the forum Adults With Cystic Fibrosis 1 year, 3 months ago
My son has cystic fibrosis so I’ve spent time on the phone with private insurance companies as well as Medicaid. I’m a disabled veteran and rely upon Medicare and the VA system.
What you experienced was the end of the year rush that insurance companies have to deal with, when people are trying to “get their medical care in” before their…[Read more]
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W. Hoh replied to the topic Warning: Ranting About Docs and Accommodations and Telehealth in the forum Adults With Cystic Fibrosis 1 year, 6 months ago
CFF.org lists the care center data for various cf are centers. They list the Guidelines for care (for pediatric patients) as
“percentage of children less than 18 years of age who have had at least four clinic visits, two lung function tests, and a sputum or throat culture. ”In order to accomplish this in a high enough percentage of patients…[Read more]
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W. Hoh replied to the topic Monday Shoutout: The Capable Disabled in the forum Adults With Cystic Fibrosis 1 year, 6 months ago
This capable disabled individual is a physician who became disabled due to a spinal cord injury in the US Army Medical Corps during the global war on terror (GWOT)… specifically Iraq military engagement.
When I had recovered enough; my wife and I decided to have children. Our first child was diagnosed with cystic fibrosis early in life. (We…[Read more]
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Oh my goodness, Dr Hoh… Thank you so much for this insight and for sharing your story! (And for this prompt, which I truly appreciate and feel humbled by)
I wish had a really thought-out response to this, because I cherish knowing more about you and your family, but I’ll be super honest when I say that… I personally really struggle with a…[Read more]
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W. Hoh replied to the topic COVID-19 check in in the forum Coronavirus (COVID-19) and CF 1 year, 7 months ago
My son is 12 years old with cystic fibrosis and I’m a retired public health position.
Here in Charleston WV, people are basically being knuckleheads. They’re not getting vaccinated insufficient numbers. the estimate that only approximately 10% wearing masks at the local stores.
Positive side, we can buy and 95 masks at the local Home Depot and…[Read more]
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W. Hoh replied to the topic Social workers and CF in the forum Adults With Cystic Fibrosis 2 years ago
I’m so happy you wrote this post!
I’m almost embarrassed to admit, that as a physician, I didn’t see the point of having a social worker on our team at the CF clinic at University of Pittsburgh… UNTIL I needed her.
There are so many programs out there to help children/adults with chronic healthcare needs but you rematch need an experienced e…[Read more]
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W. Hoh replied to the topic We Are Failing At Accessibility in The OR in the forum Adults With Cystic Fibrosis 2 years ago
My apologies. I rely primarily upon voice recognition to “type” and made a blunder.
Did not mean to say “not many deaf INDIVIDUALS have proper training in medical terminology”.
Should’ve read… not many deaf INTERPRETERS have proper training in medical terminology, not deaf individuals”. (I know that you do by this point in your life.)
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W. Hoh replied to the topic We Are Failing At Accessibility in The OR in the forum Adults With Cystic Fibrosis 2 years ago
I’m a physician and have done “spinal taps” in a fluoroscopy suite, similar to an OR, on a large number of occasions. they are usually done in a procedure room, or if there is a real need, in the OR.
I was also injured while serving in the U.S. Army Medical Corps, suffering a spinal cord injury. I’ve had lumbar punctures done on myself on a…[Read more]
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Hey Dr Hoh. Thanks for your insight! Yes, I’ve had a lot of punctures at this point (including the headache and a blood patch- luckily just once), and just once before birth with my second daughter, as I had my first naturally. They have varied in whether I’m laying face down and cant see or hear anything, to sitting up and leaning over (like…[Read more]
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W. Hoh replied to the topic Gender In The Doctor's Office… in the forum Adults With Cystic Fibrosis 2 years ago
I’m a male physician who has a 12-year-old with cystic fibrosis.
Keep in mind that males who go into pediatric pulmonology are not forced to do so. They recognize that cystic fibrosis will be a large part of their practice and knowing that CF is much more common in females for an unknown reason.
In other words, they’re choosing a specialty…[Read more]
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W. Hoh replied to the topic Gender In The Doctor's Office… in the forum Adults With Cystic Fibrosis 2 years ago
Sounds a lot like obsessive-compulsive disorder. OCD can be a serious condition and is a very common anxiety disorder in chronically ill.
Talk to someone you trust about it and get a referral for an evaluation.
I can tell you from my own experience, you can totally change your life. I used to stay up all night worried about presentations or…[Read more]
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Thank you for this W! I really appreciate your insight. To be honest, I have some strong OCD inclinations with very specific things (rituals and paranoia and control about the cleanliness of the utensils/food I eat), soooo…. you’re probably right on the money. Though I’ve never sought treatment for it, nor had anyone point it out back to me for…[Read more]
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W. Hoh replied to the topic CF and alcohol consumption in the forum Adults With Cystic Fibrosis 2 years, 2 months ago
Salt intake, not old intake.
Forgive the typo, I must rely upon voice recognition due to a service-connected disability. Thank you.
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W. Hoh replied to the topic CF and alcohol consumption in the forum Adults With Cystic Fibrosis 2 years, 2 months ago
Paul is wrong about’s old intake. People with CF do need to take extra salt in addition to what they get in a normal American diet It’s a well-established fact. but don’t trust me, some random guy on the Internet… Listen to your dietitian in your CF clinic.
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W. Hoh became a registered member 2 years, 3 months ago
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@drwill Hello and welcome to the forum. Thanks so much for joining us here. I’m Jenny, one of the forum moderators. You’ll soon be meeting my friend and co-moderator, Bailey. Both of us have CF, are mothers, are are in our 30s. We each experience CF differently and talk about our individual journeys here. Together, we strive to make the forum an…[Read more]
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