We’re looking for volunteers. As many of the veterans know, the lung lavage fluid many of us have donated in recent years has really helped to make a dent in HPS research. It’s helped the scientists to start to understand some of what happens at the cellular level with HPS. It’s help them to begin to understand how the fibrosis happens.
So, they need more lavage fluid. We’re looking for volunteers with HPS, any gene type, who would be willing to travel to the NIH and undergo a lung lavage.
I’ve had a lung lavage, so if anyone has any questions about it, I can tell you what it’s like.
To volunteer, you must be over 18. You should be in pretty good health. You can’t be on the Pirfenidone trial or the mult-drug trial. There may be some other medications/health conditions that could exclude you. The reason is that the docs at NIH would never want to do anything that could cause any other health condition to act up. Also some of the meds that HPSers take for other complications could impact the results and that would defeat the point.
Call the HPS Network if you’re interested in volunteering – www.hpsnetwork.org
What is a lung lavage?
Well, on the HPS adults listserv, we joke that it’s all sucking and no plucking.
Essentially, the doctors slide a tube down your throat that has a light and a camera on the end of it. They pass it by the vocal cords into the very upper most part of the lungs. Then they flush saline solution into the lungs to make you cough. When you cough, they suck up the liquid.
That liquid contains cells that you’ve sloughed off when you cough. We don’t take lung biopsies for research because of the bleeding risks – so this is the next best thing.
It sounds pretty horrible – but it’s not that bad really.
The docs will likely pre-treat with DDAVP for bleeding just in case – unless you know that you can’t tolerate DDAVP.
They spray some stuff in the back of your throat, which I thought was the worst part because it tastes like metal.
They tell you that you’re awake for the procedure, but they give you such good drugs you’d never know it. You’re awake enough to cough when they tell you to cough – but you have no memory of the procedure. You sort of wake up out of a haze after it’s done. Then you’re pretty tired the rest of the day.
I’d liken it to a trip to the dentist – I’m not crazy about going but it’s not totally horrible.
So, they need more lavage fluid. We’re looking for volunteers with HPS, any gene type, who would be willing to travel to the NIH and undergo a lung lavage.
I’ve had a lung lavage, so if anyone has any questions about it, I can tell you what it’s like.
To volunteer, you must be over 18. You should be in pretty good health. You can’t be on the Pirfenidone trial or the mult-drug trial. There may be some other medications/health conditions that could exclude you. The reason is that the docs at NIH would never want to do anything that could cause any other health condition to act up. Also some of the meds that HPSers take for other complications could impact the results and that would defeat the point.
Call the HPS Network if you’re interested in volunteering – www.hpsnetwork.org
What is a lung lavage?
Well, on the HPS adults listserv, we joke that it’s all sucking and no plucking.
Essentially, the doctors slide a tube down your throat that has a light and a camera on the end of it. They pass it by the vocal cords into the very upper most part of the lungs. Then they flush saline solution into the lungs to make you cough. When you cough, they suck up the liquid.
That liquid contains cells that you’ve sloughed off when you cough. We don’t take lung biopsies for research because of the bleeding risks – so this is the next best thing.
It sounds pretty horrible – but it’s not that bad really.
The docs will likely pre-treat with DDAVP for bleeding just in case – unless you know that you can’t tolerate DDAVP.
They spray some stuff in the back of your throat, which I thought was the worst part because it tastes like metal.
They tell you that you’re awake for the procedure, but they give you such good drugs you’d never know it. You’re awake enough to cough when they tell you to cough – but you have no memory of the procedure. You sort of wake up out of a haze after it’s done. Then you’re pretty tired the rest of the day.
I’d liken it to a trip to the dentist – I’m not crazy about going but it’s not totally horrible.
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