W. Hoh

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]

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]

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]

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]

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]

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.)

I…[Read more]

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]

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]

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]

Salt intake, not old intake.

Forgive the typo, I must rely upon voice recognition due to a service-connected disability. Thank you.

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.