Hello,
My name is James D. Gray.
This will most probably be the last entry in this series. The only thing I really have left to tell is about my trip to NIH. It was a trip I didn't really even want to take but apparently my need for an answer was stronger than my pride. Curiosity really is my weakness, even after I found out that I had to pay my own way for my first trip from Southwest Missouri to Bethesda, Maryland. That may not be as far as some others have traveled to get there but I had no plans to take part in a study "Something they highly encourage and pay for" meaning that there was no possible way that this could have been covered by anything, including insurance. This was just $1000 out of pocket for basically no payoff. That was terrible and a pointless rant but I will move on.
I got all my flight and hotel booking on Travelocity. It was fun to use for the first time. I even picked out a hotel that was close to the institutes and suggested by my travel coordinator. Everyone else "friends and family" was too busy to go with me. They would have had to pay their own way too, so I had to plan ahead quite a bit being that I wouldn't have a helpful navigator.
I left for the airport at around 3:30 AM. I was already still awake from the day before. When I landed to change planes, I was only half awake and thought about asking for help getting to my gate but instead decided to briskly walk and hope for the best. My ticket said my new gate was almost the farthest away possible from where I had landed and still be in the same airport. When I got there, the boarding information didn't match my printed ticket. I stepped to the hall for a bit and looked for anyone else turning away to head to a new gate but no one was behaving as such. I asked the boarding employee if I was at the correct gate and they told me that it had changed to one halfway between that location and where I came in from. I was the last person to board my second flight. I should have had an hour between arrival and boarding but my plane started to board as soon as I got off the last plane. All of this confuses me, trying to remember the events. I wanted a seat behind the wing of both planes but I ended up with the wing being right out my window. I still had a good enough view to grab some video though. I'll use some of the video for a future YouTube project.
This is where the fun begins. It was a little after 11 or 11:30 AM when I landed at the DCA. Again, I decided to just get as far as I could without asking for help. I followed the signs to the pickup exit. When I got outside I looked to my right and saw taxis and to my left and saw shuttles. I remembered reading about NIH having shuttles and walked down to my left. There I saw a sign that read "Hotel Shuttles" and at the bottom it had "NIH" on it. This seemed to comfort me a little, making me think that the rest of this was going to be easy. I waited for a shuttle with my hotel name on it for about 2 hours. I saw many other shuttles come and go multiple times. I even once saw a shuttle without a hotel name but it had "NIH" on the side. The driver and I looked at each other for a bit. I didn't get on but instead watched him drive away. I called my travel coordinator to find out more about this situation. They told me that there would be no shuttle from the airport that drove to Bethesda, except for the NIH shuttle that would be back every 3 hours. The next one would come back around 3:30 PM.
It was getting warm and I was having trouble breathing. I had brought a jacket because I thought that it would be colder up north but I didn't know that there was a tropical storm off the coast raising the temperature and humidity. One of the drivers of the other shuttles pulled up and was helping passengers load their luggage so I approached him and asked if there was a shuttle that went to NIH from the hotel he was driving to. His reply was "What's NIH?" Brilliant day already. I wanted to take a shuttle, to a shuttle, to a shuttle, to my hotel but there was no such path. The very nice lady at the airport information and baggage desk tried to help me find a way to my hotel. She even got me a bottle of water after we decided that the best way was to wait for the NIH shuttle to come back around. I did wait for it to come back. It was a little behind but when it did finally come back, I got on and thought that was the end of all the trouble. I don't want to say anything bad about the driver but the man stopped at every crosswalk even when it was clearly visible that there was no one even approaching on foot. Can you see what's wrong with that? I can.
I called my hotel when I was dropped off at the institutes and asked if they could send a shuttle to get me. They said there would be a van with their name on it running it's route and it was half an hour away. There I waited. "Again" Eventually I got tired of waiting for this van to come around. It was already over an hour late and I saw two other shuttles come and go. The driver of one of the other shuttles came out of the building and yelled "Hotels South!" I was already aware that my hotel was south of NIH so I told him that I would be joining him. The driver let me sit in the front seat and close to 6 hours after I got off my plane I had made it to my hotel. I checked in and crashed on the bed.
The next day I woke up early to grab some food from the continental breakfast and take the first shuttle to NIH. If it didn't show up in time I still would have made it to my appointment, so this time I wasn't worried. I got back to the institutes with plenty of time to look around. A display with a variety of minerals that have advanced the medical practice caught my eye. The rest of the time went by without any issues. Mostly I just waited to see the doctor and find out what they had to say. That and they drew my blood to run the test.
And here it is. I'm pretty sick of this whole ordeal so I'll just come right out with it. The doctors told me that when I was very young "probably" I got EBV. When I had pneumonia the EBV found it's way into my lungs and hid there from my immune system. Most people that have EBV have immune systems that keep it in check and for a while mine did too, but I also have autoimmune issues in my family. The T cells that are supposed to react in this case are inactive in my body. It's a genetic mutation and there are no current good treatments. The doctors told me that any current treatment would be bad for me and not to do them. If you're wondering what I can expect from this it's not good. I will slowly get worse as my immune system attacks the inflamed cells in my lungs until I develop lymphoma. Even if they treat the lymphoma at that time I will still have the problem that caused it.
So there it is. EBV positive Lymphoproliferative Disorder. I can't believe I spelled that correctly first try. I have no plans on attending the trial. It would require me to fly back to NIH every two weeks for two years "Once the trial opens." From what I understood it's also still very experimental and there would be known and unknown side effects to look for. Though I don't quite know how much time I have left I don't plan on this changing much in my day to day life. I've already decided to work hard on having a career in art and despite all my roadblocks I'm not getting further from that goal. In the meantime please enjoy our podcast when I get them up and any other blog series that shows up here.
We also have a link to our YouTube pages on the right of the home page. :)
END!
P.S. My cousin visited with me while I was up north and then I went home. I forgot about that.
My name is James D. Gray.
This will most probably be the last entry in this series. The only thing I really have left to tell is about my trip to NIH. It was a trip I didn't really even want to take but apparently my need for an answer was stronger than my pride. Curiosity really is my weakness, even after I found out that I had to pay my own way for my first trip from Southwest Missouri to Bethesda, Maryland. That may not be as far as some others have traveled to get there but I had no plans to take part in a study "Something they highly encourage and pay for" meaning that there was no possible way that this could have been covered by anything, including insurance. This was just $1000 out of pocket for basically no payoff. That was terrible and a pointless rant but I will move on.
I got all my flight and hotel booking on Travelocity. It was fun to use for the first time. I even picked out a hotel that was close to the institutes and suggested by my travel coordinator. Everyone else "friends and family" was too busy to go with me. They would have had to pay their own way too, so I had to plan ahead quite a bit being that I wouldn't have a helpful navigator.
I left for the airport at around 3:30 AM. I was already still awake from the day before. When I landed to change planes, I was only half awake and thought about asking for help getting to my gate but instead decided to briskly walk and hope for the best. My ticket said my new gate was almost the farthest away possible from where I had landed and still be in the same airport. When I got there, the boarding information didn't match my printed ticket. I stepped to the hall for a bit and looked for anyone else turning away to head to a new gate but no one was behaving as such. I asked the boarding employee if I was at the correct gate and they told me that it had changed to one halfway between that location and where I came in from. I was the last person to board my second flight. I should have had an hour between arrival and boarding but my plane started to board as soon as I got off the last plane. All of this confuses me, trying to remember the events. I wanted a seat behind the wing of both planes but I ended up with the wing being right out my window. I still had a good enough view to grab some video though. I'll use some of the video for a future YouTube project.
This is where the fun begins. It was a little after 11 or 11:30 AM when I landed at the DCA. Again, I decided to just get as far as I could without asking for help. I followed the signs to the pickup exit. When I got outside I looked to my right and saw taxis and to my left and saw shuttles. I remembered reading about NIH having shuttles and walked down to my left. There I saw a sign that read "Hotel Shuttles" and at the bottom it had "NIH" on it. This seemed to comfort me a little, making me think that the rest of this was going to be easy. I waited for a shuttle with my hotel name on it for about 2 hours. I saw many other shuttles come and go multiple times. I even once saw a shuttle without a hotel name but it had "NIH" on the side. The driver and I looked at each other for a bit. I didn't get on but instead watched him drive away. I called my travel coordinator to find out more about this situation. They told me that there would be no shuttle from the airport that drove to Bethesda, except for the NIH shuttle that would be back every 3 hours. The next one would come back around 3:30 PM.
It was getting warm and I was having trouble breathing. I had brought a jacket because I thought that it would be colder up north but I didn't know that there was a tropical storm off the coast raising the temperature and humidity. One of the drivers of the other shuttles pulled up and was helping passengers load their luggage so I approached him and asked if there was a shuttle that went to NIH from the hotel he was driving to. His reply was "What's NIH?" Brilliant day already. I wanted to take a shuttle, to a shuttle, to a shuttle, to my hotel but there was no such path. The very nice lady at the airport information and baggage desk tried to help me find a way to my hotel. She even got me a bottle of water after we decided that the best way was to wait for the NIH shuttle to come back around. I did wait for it to come back. It was a little behind but when it did finally come back, I got on and thought that was the end of all the trouble. I don't want to say anything bad about the driver but the man stopped at every crosswalk even when it was clearly visible that there was no one even approaching on foot. Can you see what's wrong with that? I can.
I called my hotel when I was dropped off at the institutes and asked if they could send a shuttle to get me. They said there would be a van with their name on it running it's route and it was half an hour away. There I waited. "Again" Eventually I got tired of waiting for this van to come around. It was already over an hour late and I saw two other shuttles come and go. The driver of one of the other shuttles came out of the building and yelled "Hotels South!" I was already aware that my hotel was south of NIH so I told him that I would be joining him. The driver let me sit in the front seat and close to 6 hours after I got off my plane I had made it to my hotel. I checked in and crashed on the bed.
The next day I woke up early to grab some food from the continental breakfast and take the first shuttle to NIH. If it didn't show up in time I still would have made it to my appointment, so this time I wasn't worried. I got back to the institutes with plenty of time to look around. A display with a variety of minerals that have advanced the medical practice caught my eye. The rest of the time went by without any issues. Mostly I just waited to see the doctor and find out what they had to say. That and they drew my blood to run the test.
And here it is. I'm pretty sick of this whole ordeal so I'll just come right out with it. The doctors told me that when I was very young "probably" I got EBV. When I had pneumonia the EBV found it's way into my lungs and hid there from my immune system. Most people that have EBV have immune systems that keep it in check and for a while mine did too, but I also have autoimmune issues in my family. The T cells that are supposed to react in this case are inactive in my body. It's a genetic mutation and there are no current good treatments. The doctors told me that any current treatment would be bad for me and not to do them. If you're wondering what I can expect from this it's not good. I will slowly get worse as my immune system attacks the inflamed cells in my lungs until I develop lymphoma. Even if they treat the lymphoma at that time I will still have the problem that caused it.
So there it is. EBV positive Lymphoproliferative Disorder. I can't believe I spelled that correctly first try. I have no plans on attending the trial. It would require me to fly back to NIH every two weeks for two years "Once the trial opens." From what I understood it's also still very experimental and there would be known and unknown side effects to look for. Though I don't quite know how much time I have left I don't plan on this changing much in my day to day life. I've already decided to work hard on having a career in art and despite all my roadblocks I'm not getting further from that goal. In the meantime please enjoy our podcast when I get them up and any other blog series that shows up here.
We also have a link to our YouTube pages on the right of the home page. :)
END!
P.S. My cousin visited with me while I was up north and then I went home. I forgot about that.
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