After having to pester poor Mr. Kevin several times, which killed me because I knew I’d tossed a bunch of extra work on his plate last week, I finally heard from Iesha – the guru of the NIH appointments and travel vouchers.
Essentially, I don’t really care what tests NIH wants to run once I’m there, so I didn’t need an appointment schedule until I arrive. I’ve got a pretty good idea what they’re going to want to do to me – and I’ve cleared the week for them. What I was worried about was a plane ticket! Iesha, living the nation’s capitol, probably doesn’t appreciate that there are only so many flights a day that fly direct from Kansas City to Washington, D.C. (Regan Airport). Traveling for business, I know these flights fill up – and if you get caught without a seat you get to spend a day hopping across the country and sitting in really boring airports for hours! Even worse, you might get the dreaded, “middle seat.”
But, today my precious travel voucher was entered so Omega Travel could book the much needed ticket. I got THE LAST seat on a crappy flight that gets in at 10:00 pm. I’ve got to be at NIH by 8:00 am the next morning, and I’m staying with Ryan who lives about an hour or more away. How much do you want to bet I’m late? I’m having a harder and harder time functioning without adequate sleep, which isn’t a good trend since I’m a night owl with an early morning job.
Usually NIH would pony up a hotel room if they expected you to do tests as an outpatient – but there’s no budget for it that week. Budgets are getting increasingly tighter at NIH, and I’ve sort of strong armed my way in there to start with, so I’m not going to raise a fuss. I"m an unplanned guest. I’m just grateful that they’ve agreed to get me in with less than 30 days notice – that just doesn’t happen in the world of NIH.
To be honest, I’d rather be an inpatient. Crazy? Who wants to stay in a hospital? Well, I usually go by myself. You spend so much time sitting and waiting at NIH that I’d just assume have my base of operations – a bed, TV and internet access – to pass the time. I’d just assume move in, set up my watercolor paints, and then run off to appointments as needed. Staying in a hospital doesn’t bother me – and it’s cheaper since they feed you. Oh well. No matter.
I’d been doing a pretty good job of not getting worked up about this trip until today. I’ve been so busy (not that I’m not busy now) that I’ve been somewhat distracted.
What’s bothering me is Dr. Gahl and Kevin keep saying, “When you’re admitted to the trial..” and not “If you’re admitted to the trial…” I know my lung function tests are in the range, and so far I’ve had no other health issues that would keep me out, so in their minds this trip is a formality.
But in my little sick coping world, I have to imagine the worst – just in case. It seems like every time I turn around the rug gets yanked out from under me, and I’m a bit nervous that this is all going too well. First there were my vision issues, but I learned to deal with those with no problem. Then I developed what they thought was Crohn’s disease, and when it didn’t get better I found out I had a “minor platelet disorder.” When I got all that under control and life was good, the minor platelet disorder turned out to be Hermansky-Pudlak Syndrome and it wasn’t so minor. Then I learned I had the early signs of lung disease. And now, my pulmonary function results have started to slip – just seems like I’m due for another shocker. Learning I had some new ailment that would exempt me from the trial would just seem par for the course.
So, until I get some pills, whatever they may be (placebo or the real stuff) in my hot little hands and what I’m sure will be a classic Kevin lecture – I’m not counting on anything. Those two new nodules and “the patchy spot” on my CT scan are sort of haunting me.
Essentially, I don’t really care what tests NIH wants to run once I’m there, so I didn’t need an appointment schedule until I arrive. I’ve got a pretty good idea what they’re going to want to do to me – and I’ve cleared the week for them. What I was worried about was a plane ticket! Iesha, living the nation’s capitol, probably doesn’t appreciate that there are only so many flights a day that fly direct from Kansas City to Washington, D.C. (Regan Airport). Traveling for business, I know these flights fill up – and if you get caught without a seat you get to spend a day hopping across the country and sitting in really boring airports for hours! Even worse, you might get the dreaded, “middle seat.”
But, today my precious travel voucher was entered so Omega Travel could book the much needed ticket. I got THE LAST seat on a crappy flight that gets in at 10:00 pm. I’ve got to be at NIH by 8:00 am the next morning, and I’m staying with Ryan who lives about an hour or more away. How much do you want to bet I’m late? I’m having a harder and harder time functioning without adequate sleep, which isn’t a good trend since I’m a night owl with an early morning job.
Usually NIH would pony up a hotel room if they expected you to do tests as an outpatient – but there’s no budget for it that week. Budgets are getting increasingly tighter at NIH, and I’ve sort of strong armed my way in there to start with, so I’m not going to raise a fuss. I"m an unplanned guest. I’m just grateful that they’ve agreed to get me in with less than 30 days notice – that just doesn’t happen in the world of NIH.
To be honest, I’d rather be an inpatient. Crazy? Who wants to stay in a hospital? Well, I usually go by myself. You spend so much time sitting and waiting at NIH that I’d just assume have my base of operations – a bed, TV and internet access – to pass the time. I’d just assume move in, set up my watercolor paints, and then run off to appointments as needed. Staying in a hospital doesn’t bother me – and it’s cheaper since they feed you. Oh well. No matter.
I’d been doing a pretty good job of not getting worked up about this trip until today. I’ve been so busy (not that I’m not busy now) that I’ve been somewhat distracted.
What’s bothering me is Dr. Gahl and Kevin keep saying, “When you’re admitted to the trial..” and not “If you’re admitted to the trial…” I know my lung function tests are in the range, and so far I’ve had no other health issues that would keep me out, so in their minds this trip is a formality.
But in my little sick coping world, I have to imagine the worst – just in case. It seems like every time I turn around the rug gets yanked out from under me, and I’m a bit nervous that this is all going too well. First there were my vision issues, but I learned to deal with those with no problem. Then I developed what they thought was Crohn’s disease, and when it didn’t get better I found out I had a “minor platelet disorder.” When I got all that under control and life was good, the minor platelet disorder turned out to be Hermansky-Pudlak Syndrome and it wasn’t so minor. Then I learned I had the early signs of lung disease. And now, my pulmonary function results have started to slip – just seems like I’m due for another shocker. Learning I had some new ailment that would exempt me from the trial would just seem par for the course.
So, until I get some pills, whatever they may be (placebo or the real stuff) in my hot little hands and what I’m sure will be a classic Kevin lecture – I’m not counting on anything. Those two new nodules and “the patchy spot” on my CT scan are sort of haunting me.
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