Wednesday, July 07, 2010

NIH protocol needs volunteers

Guess what! This isn’t a fundraising note! Grin!

As many of you know, we have a protocol underway at the National Institutes of Health to collect lung lavage fluid from HPS volunteers to study the lung disease of HPS. This is not a treatment protocol. It’s for research only.

Many of you have already volunteered and are on my list for the NIH.

I just wanted to make sure everyone is aware of this opportunity.

Volunteers for this protocol must be older than 18 years of age and have HPS types 1, 3 or 4. If you are interested the NIH will review your medical background. Some medical conditions or medications may make you ineligible for the protocol.

We are especially in need of HPS 3 volunteers. Although people with HPS 3 do not develop lung disease, because you also have HPS you are an excellent control group for the researchers at NIH.

What is a lung lavage?

If you volunteer (I’ve done it twice), here’s what you can expect.

You will be an inpatient at the NIH hospital. The night before the lavage they’ll hook you up to an IV of fluids to make sure you are well hydrated. In the morning you’ll be given IV DDAVP just as a precaution. The procedure typically doesn’t involve any bleeding. They will give you the DDAVP and have platelets on hand just to be safe.

When it’s time they’ll take to you the bronc suite. You’ll sit in a chair that looks a lot like a dentist chair. They’ll give you a breathing treatment to numb the back of your throat and some liquid to gargle. I’ll be honest – it doesn’t taste very good. It works very well though!

You have to be awake for this, but they give you drugs so you’re not really aware of anything nor will you remember much if anything.

When you’re good and numb and dopy, they pass a thin tube down your throat past the vocal cords into your lungs. It has a camera on the end of it. They flush some solution into your lungs that will make you cough, and when you do, your lungs will sluff off cells. They will then suck up the fluid with those cells for study.

When you come around back to yourself, you’ll stay in the bronc lab for two hours just to be observed. They’ll check up on you frequently through the day and you might feel tired afterward. Some people get a headache.

Before they do this, they’ll run you through many of the tests we’re all used to doing at NIH just to be sure you’ll be okay for the procedure.

If you’d be willing to volunteer, please e-mail me at

Thanks everyone!!!!!

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