Okay, now you're all going to find out just how horrible my spelling etc. really is!!! (Even ending a sentence with a form of the verb "be" oh the shame!) I have arrived at the National Institutes of Health for my first follow up visit since beginning the Pirfenidone study.
I'm an inpatent this time which means I have bedside internet access, but the screen is terribly hard to read and it's an e-mail or game terminal only. I typically at least write my posts in Word first!
I haven't yet figured out how to use the laptop I brought to do file stories though - sorry office! They won't let you unplug the terminal to hook in your network connection. There are some wireless hot spots, or so I've been told, but I don't have a wireless card. That's the long way of saying, what you see is what you get! Hey, at least I can blog! We've got to take care of the important things you know!
It seems like every time I fly into Regan National Airport it's an event. Something always goes wrong. This time I'd been promised that someone would pick me up at baggage claim and drive me to the hotel. Mind you I've traveled around the world and have no problem getting a cab, but they offered, and since I'm so easily fatigued I was actually quite grateful for the offer. No schlepping bags all over creation. Someone would just take care of me.
Well, I arrived and there was no car to be found. I had no way of knowing if they didn't show, or if they were standing somewhere holding a sign and I just couldn't see them. After about a half hour I was starting to get quite cranky. I didn't feel well. My tummy was upset. I felt dehydrated (my ostomy had been leaking earlier in the day so I was trying not to eat or drink too much so I wouldn't have to try to change my ostomy in an airliner bathroom). I called the number I'd been given to call if there was a problem with the ride, and no one answered. I called again and let it ring and ring, and no one answered.
So, feeling really tired and increasingly cranky, I opted for a cab. But, I only had the phone number and not the address of the hotel. I called it, but got some strange message about how my mobile provider couldn't connect to that number. I'd never heard of that before! So, Ryan to the rescue. I call him and he got online and found the address.
It was midnight by the time I got to the hotel and I was supposed to be at NIH by 8:00 am. I decided I needed to unwind a bit before going to bed and turned on public television.
Wow! Talk about something to put things in perspective. They had a show on about inspiration. There was a Rwandan woman on who was talking about how she'd found God during the genocide in her country. She spent three months in a three-foot by four-foot bathroom with seven other women trying to avoid being killed. She was amazing, and suddenly I felt very stupid and small. How could I be so irritated about such a small thing. After all, here I am, lucky enough to even be in this trial in the first place.
I was, however, concerned about whether this was a fluke, one-time thing or whether there's a bigger problem I ought to know about. Thank God it was me who was left stranded at the airport and not someone coming from Puerto Rico who didn't speak the language and maybe wasn't as used to traveling. NIH tries to make the travel as easy as possible, especially for the people coming from Puerto Rico. But, that's the sort of thing that could scare someone away from participating in the research. Further investigation on my part is in store!
This morning the hotel drove me to the NIH in the staff car - very nice of them!
For those who have never been to NIH and want to know more about the experience, plan on admissions taking FOREVER. Actually, this time it was quicker than in times past. I was only down there for an hour and a half. Bring breakfast with you to eat while you wait. I'd snagged an apple from the hotel continental breakfast, but when I bit into it, it tasted something like paste. Yuck!
After getting settled in my room a genetics fellow appeared and asked a lot of family history questions. I was actually quite pleased they were asking me all those questions again because I've learned a lot more about my family's health history since I last saw the geneticist.
Kevin poked his head in long enough to say hello, but I haven't had a chance to chat yet.
I've had a CT scan, EKG and blood taken. And, I've left the required presents in the bathroom - stool and pee samples. Oh what fun! God Bless Nurses!
I'd told everyone about this cough, but I think I'm starting to get their attention. Dr. Gahl's fellow was just by to listen to my lungs because the nurse noted the hacking and they've given me abuderol. I don't think it will help more than an hour or so though. Been there, done that.
I'm an inpatent this time which means I have bedside internet access, but the screen is terribly hard to read and it's an e-mail or game terminal only. I typically at least write my posts in Word first!
I haven't yet figured out how to use the laptop I brought to do file stories though - sorry office! They won't let you unplug the terminal to hook in your network connection. There are some wireless hot spots, or so I've been told, but I don't have a wireless card. That's the long way of saying, what you see is what you get! Hey, at least I can blog! We've got to take care of the important things you know!
It seems like every time I fly into Regan National Airport it's an event. Something always goes wrong. This time I'd been promised that someone would pick me up at baggage claim and drive me to the hotel. Mind you I've traveled around the world and have no problem getting a cab, but they offered, and since I'm so easily fatigued I was actually quite grateful for the offer. No schlepping bags all over creation. Someone would just take care of me.
Well, I arrived and there was no car to be found. I had no way of knowing if they didn't show, or if they were standing somewhere holding a sign and I just couldn't see them. After about a half hour I was starting to get quite cranky. I didn't feel well. My tummy was upset. I felt dehydrated (my ostomy had been leaking earlier in the day so I was trying not to eat or drink too much so I wouldn't have to try to change my ostomy in an airliner bathroom). I called the number I'd been given to call if there was a problem with the ride, and no one answered. I called again and let it ring and ring, and no one answered.
So, feeling really tired and increasingly cranky, I opted for a cab. But, I only had the phone number and not the address of the hotel. I called it, but got some strange message about how my mobile provider couldn't connect to that number. I'd never heard of that before! So, Ryan to the rescue. I call him and he got online and found the address.
It was midnight by the time I got to the hotel and I was supposed to be at NIH by 8:00 am. I decided I needed to unwind a bit before going to bed and turned on public television.
Wow! Talk about something to put things in perspective. They had a show on about inspiration. There was a Rwandan woman on who was talking about how she'd found God during the genocide in her country. She spent three months in a three-foot by four-foot bathroom with seven other women trying to avoid being killed. She was amazing, and suddenly I felt very stupid and small. How could I be so irritated about such a small thing. After all, here I am, lucky enough to even be in this trial in the first place.
I was, however, concerned about whether this was a fluke, one-time thing or whether there's a bigger problem I ought to know about. Thank God it was me who was left stranded at the airport and not someone coming from Puerto Rico who didn't speak the language and maybe wasn't as used to traveling. NIH tries to make the travel as easy as possible, especially for the people coming from Puerto Rico. But, that's the sort of thing that could scare someone away from participating in the research. Further investigation on my part is in store!
This morning the hotel drove me to the NIH in the staff car - very nice of them!
For those who have never been to NIH and want to know more about the experience, plan on admissions taking FOREVER. Actually, this time it was quicker than in times past. I was only down there for an hour and a half. Bring breakfast with you to eat while you wait. I'd snagged an apple from the hotel continental breakfast, but when I bit into it, it tasted something like paste. Yuck!
After getting settled in my room a genetics fellow appeared and asked a lot of family history questions. I was actually quite pleased they were asking me all those questions again because I've learned a lot more about my family's health history since I last saw the geneticist.
Kevin poked his head in long enough to say hello, but I haven't had a chance to chat yet.
I've had a CT scan, EKG and blood taken. And, I've left the required presents in the bathroom - stool and pee samples. Oh what fun! God Bless Nurses!
I'd told everyone about this cough, but I think I'm starting to get their attention. Dr. Gahl's fellow was just by to listen to my lungs because the nurse noted the hacking and they've given me abuderol. I don't think it will help more than an hour or so though. Been there, done that.
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