I'm here!
Although the morning at home was a bit bumpy, the trip went well. I should be dead tired, but I think the overall excitement of the day has me all stirred up.
I think I may have to start asking for help with the airlines, however, which has me a bit bummed. It isn't really a vision thing. It's more an issue that traveling with all this medical "crap" is getting more complicated.
TSA informed me today that the rules have changed for traveling with a CPAP machine. They don't just have to take it and test it now, but you have to remove it from the bag.
So, there I was in airport security trying to take off my shoes, take out my laptop, take out my camera and now take out my CPAP with all of its cords and hoses - even though there was no line it took me a half hour to get through security. I was exhausted by the end of all that. And, not being able to see well, I felt uncomfortable having my belongings, expensive belongings, strewn from here to there as they were inspected.
The film folks met me at the airport and filmed Hector, the cab driver, helping me get my bags etc.
Hector is a great guy.
One of the challenges to recruiting for our drug trial is that so many of the patients must come from Puerto Rico. Not everyone has great orientation and mobility skills. Many HPS'ers haven't traveled a lot. So, coming to a huge airport in Washington D.C. and trying to figure out how to get to the NIH when you can't see well and don't speak the language can be very scary.
Thus, the NIH contracted with Hector the cab driver. Hector is from Columbia and speaks Spanish. The NIH has worked it out with the airport to allow Hector special permission to meet patients at the gate. He helps you find your luggage, drives you to the front door of the hospital, and even walks you to admissions. It makes the travel experience much less stressful, and that makes patients more willing to participate.
I was very touched because as they interviewed me in the taxi, Hector chimed in with some of the difficulties he's observed among the HPS patients. Hector knows what's going on. I was also so touched because at one point he said something to the effect of, "I feel so honored to be able to help. I feel like I'm on the team to help cure HPS." And he's right. He's a key member of our team.
When you think of key players in a drug trial, you might think of our brilliant researchers, of the nurses that care for us - but you might not think of the cab driver. But for us, the relationship Hector is building with patients helps them to feel safe and comfortable about coming back. I was so glad they got that on camera - I hope it comes out okay.
So, now I'm safely in my room with Debbie, another HPS'er I've known for some time. Debbie is such a riot! This evening she was talking with her family back home and she says, "What, do you think my initials are G.O.D? Take care of it yourself....." I busted out laughing!
So, the usual disclaimer here about my NIH blogs - this is an e-terminal at our bedside - and it doesn't have all of my adaptive tech stuff on it. I might make a lot of spelling and typing boo boos because it's hard to see.
Although the morning at home was a bit bumpy, the trip went well. I should be dead tired, but I think the overall excitement of the day has me all stirred up.
I think I may have to start asking for help with the airlines, however, which has me a bit bummed. It isn't really a vision thing. It's more an issue that traveling with all this medical "crap" is getting more complicated.
TSA informed me today that the rules have changed for traveling with a CPAP machine. They don't just have to take it and test it now, but you have to remove it from the bag.
So, there I was in airport security trying to take off my shoes, take out my laptop, take out my camera and now take out my CPAP with all of its cords and hoses - even though there was no line it took me a half hour to get through security. I was exhausted by the end of all that. And, not being able to see well, I felt uncomfortable having my belongings, expensive belongings, strewn from here to there as they were inspected.
The film folks met me at the airport and filmed Hector, the cab driver, helping me get my bags etc.
Hector is a great guy.
One of the challenges to recruiting for our drug trial is that so many of the patients must come from Puerto Rico. Not everyone has great orientation and mobility skills. Many HPS'ers haven't traveled a lot. So, coming to a huge airport in Washington D.C. and trying to figure out how to get to the NIH when you can't see well and don't speak the language can be very scary.
Thus, the NIH contracted with Hector the cab driver. Hector is from Columbia and speaks Spanish. The NIH has worked it out with the airport to allow Hector special permission to meet patients at the gate. He helps you find your luggage, drives you to the front door of the hospital, and even walks you to admissions. It makes the travel experience much less stressful, and that makes patients more willing to participate.
I was very touched because as they interviewed me in the taxi, Hector chimed in with some of the difficulties he's observed among the HPS patients. Hector knows what's going on. I was also so touched because at one point he said something to the effect of, "I feel so honored to be able to help. I feel like I'm on the team to help cure HPS." And he's right. He's a key member of our team.
When you think of key players in a drug trial, you might think of our brilliant researchers, of the nurses that care for us - but you might not think of the cab driver. But for us, the relationship Hector is building with patients helps them to feel safe and comfortable about coming back. I was so glad they got that on camera - I hope it comes out okay.
So, now I'm safely in my room with Debbie, another HPS'er I've known for some time. Debbie is such a riot! This evening she was talking with her family back home and she says, "What, do you think my initials are G.O.D? Take care of it yourself....." I busted out laughing!
So, the usual disclaimer here about my NIH blogs - this is an e-terminal at our bedside - and it doesn't have all of my adaptive tech stuff on it. I might make a lot of spelling and typing boo boos because it's hard to see.
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