I’m really sorry I haven’t posted about my tests on Wednesday yet. It’s been a totally crazy week. You’ll have to take my word for it when I tell you I had bigger fish to fry.
So, first the good news. My kidneys and bladder appear to be one organ system in my body working just fine! They did send more fluid out to another lab to test for a few things, but according to the scope, everything looked fine. The doctor said, “Don’t trade your bladder with anyone.” Grin! Of course the blood is still in my urine, but I think that this point they're willing to chalk it all up to having a bleeding disorder.
The procedure, however, was really not fun. Thankfully, it was relatively short.
Truth is I’m a medical weenie. I have a low tolerance for pain.
When I was a kid I was so afraid of getting my blood drawn that I’d pass out almost every time. When I was about 14 Ryan needed some dental surgery. The doctors were trying to get to the bottom of our bleeding issues. They sent us to Lahnstuhl American Hospital for tests which involved taking blood. I passed out, and when I came around there were all these doctors and nurses around me and, of course, Ryan. Ryan was standing behind the medical crew on a chair laughing at me and making faces. My mother was denying any knowledge of me in the waiting room! Grin! She was so embarrassed! Gotta love family! Grin!
Ryan was always the tough one on the medical front. I think medical procedures aren’t as bad the more “practice” you have at them. As a kid I was never sick, never in a hospital etc. Ryan, however, had multiple eye surgeries. He was in the hospital for phenomena for two weeks in kindergarten. He had practice at being poked and prodded.
When I became sick with bowel issues in college I quickly caught up. Now it’s embarrassing to think that I ever fainted over having my blood taken. Getting an IV is nothing. I’ve been scoped down the throat and up the back end and had all sorts of nasty things squirted into me and sucked out of me from every imaginable place. Now, it’s not much of a big deal.
But for this test, I was my old self – more nervous than a long-tailed cat in a room full of rocking chairs. It’s the unknown. What exactly are you people going to do to me now? Can I trust you?
I warned them that I was a wimp lest they be deceived by my records.
The nurse was a very, very patient and kind woman. As she said, “I can tell you it’s short and not that bad, but you’re not going to believe me until it’s over.” Yep, that’s pretty much right.
They put a little numbing gel down, and then the nurse passed a catheter into my bladder. She ran water inside several times and collected the contents – much like the lung lavages some of us have had – only this time it was a bladder. Then the doctor came in. I think I might have been a bit swollen by this time as he seemed to have a little trouble getting the tube with the camera on the end into my bladder.
Often when you get “scoped” for something, you can watch the whole thing on the television monitor. Believe it or not, I like to watch. I try to separate myself from what’s actually going on and instead be fascinated by what my insides actually look like. This time, however, the camera viewer was on the end of the tube and the doctor peered through it as if he were looking through a monocular. I didn’t get to see a thing.
As I lay there with my feet in the stirrups, exposed to the world, with this camera in my bladder, the doctor started to ask me questions about HPS. I’m not sure if it was a tactic to distract me, like asking a kid if they like Mickey Mouse as you give them a shot – or if he was really curious. But, there I was, exposed to the world and quite uncomfortable explaining the platelet defect in HPS, the differences in phenotype, the known genes, and the founders’ effect in Puerto Rico etc. If it was a ploy to distract me, it sort of worked.
After the procedure I peed my brains out. I kept trying to leave the clinic, but I was afraid to because I felt so uncomfortable and was constantly peeing. When you call a cab it can sometimes take an hour to get there. I had visions of my ride, charging by the second, in the pick-up only lane outside as I sat on the toilet inside trying to get to a point where I was ready to leave. Or even worse - peeing in the taxi on the way home!
I expected the procedure its self to be yucky, but I didn’t expect to feel lousy afterwards. They gave me preventative antibiotics but I still ran a low grade fever the rest of the day. I felt crampy and just all around uncomfortable down south, if you know what I mean. When I left the clinic there was no bleeding, but later that afternoon I did have some. It felt as though I were just bruised and swollen from the whole thing. I drank as much as I could stand to try to flush things out, yet when I went to the bathroom it burned like crazy.
My neighbor was home, and as I moaned in the bathroom, over and over, I couldn’t help but wonder what he must be thinking!
Today, however, I feel back to normal. No bleeding. No fever. No burning. But, it feels like I spent the better part of my day in the ladies’ room peeing – probably a side effect.
So, first the good news. My kidneys and bladder appear to be one organ system in my body working just fine! They did send more fluid out to another lab to test for a few things, but according to the scope, everything looked fine. The doctor said, “Don’t trade your bladder with anyone.” Grin! Of course the blood is still in my urine, but I think that this point they're willing to chalk it all up to having a bleeding disorder.
The procedure, however, was really not fun. Thankfully, it was relatively short.
Truth is I’m a medical weenie. I have a low tolerance for pain.
When I was a kid I was so afraid of getting my blood drawn that I’d pass out almost every time. When I was about 14 Ryan needed some dental surgery. The doctors were trying to get to the bottom of our bleeding issues. They sent us to Lahnstuhl American Hospital for tests which involved taking blood. I passed out, and when I came around there were all these doctors and nurses around me and, of course, Ryan. Ryan was standing behind the medical crew on a chair laughing at me and making faces. My mother was denying any knowledge of me in the waiting room! Grin! She was so embarrassed! Gotta love family! Grin!
Ryan was always the tough one on the medical front. I think medical procedures aren’t as bad the more “practice” you have at them. As a kid I was never sick, never in a hospital etc. Ryan, however, had multiple eye surgeries. He was in the hospital for phenomena for two weeks in kindergarten. He had practice at being poked and prodded.
When I became sick with bowel issues in college I quickly caught up. Now it’s embarrassing to think that I ever fainted over having my blood taken. Getting an IV is nothing. I’ve been scoped down the throat and up the back end and had all sorts of nasty things squirted into me and sucked out of me from every imaginable place. Now, it’s not much of a big deal.
But for this test, I was my old self – more nervous than a long-tailed cat in a room full of rocking chairs. It’s the unknown. What exactly are you people going to do to me now? Can I trust you?
I warned them that I was a wimp lest they be deceived by my records.
The nurse was a very, very patient and kind woman. As she said, “I can tell you it’s short and not that bad, but you’re not going to believe me until it’s over.” Yep, that’s pretty much right.
They put a little numbing gel down, and then the nurse passed a catheter into my bladder. She ran water inside several times and collected the contents – much like the lung lavages some of us have had – only this time it was a bladder. Then the doctor came in. I think I might have been a bit swollen by this time as he seemed to have a little trouble getting the tube with the camera on the end into my bladder.
Often when you get “scoped” for something, you can watch the whole thing on the television monitor. Believe it or not, I like to watch. I try to separate myself from what’s actually going on and instead be fascinated by what my insides actually look like. This time, however, the camera viewer was on the end of the tube and the doctor peered through it as if he were looking through a monocular. I didn’t get to see a thing.
As I lay there with my feet in the stirrups, exposed to the world, with this camera in my bladder, the doctor started to ask me questions about HPS. I’m not sure if it was a tactic to distract me, like asking a kid if they like Mickey Mouse as you give them a shot – or if he was really curious. But, there I was, exposed to the world and quite uncomfortable explaining the platelet defect in HPS, the differences in phenotype, the known genes, and the founders’ effect in Puerto Rico etc. If it was a ploy to distract me, it sort of worked.
After the procedure I peed my brains out. I kept trying to leave the clinic, but I was afraid to because I felt so uncomfortable and was constantly peeing. When you call a cab it can sometimes take an hour to get there. I had visions of my ride, charging by the second, in the pick-up only lane outside as I sat on the toilet inside trying to get to a point where I was ready to leave. Or even worse - peeing in the taxi on the way home!
I expected the procedure its self to be yucky, but I didn’t expect to feel lousy afterwards. They gave me preventative antibiotics but I still ran a low grade fever the rest of the day. I felt crampy and just all around uncomfortable down south, if you know what I mean. When I left the clinic there was no bleeding, but later that afternoon I did have some. It felt as though I were just bruised and swollen from the whole thing. I drank as much as I could stand to try to flush things out, yet when I went to the bathroom it burned like crazy.
My neighbor was home, and as I moaned in the bathroom, over and over, I couldn’t help but wonder what he must be thinking!
Today, however, I feel back to normal. No bleeding. No fever. No burning. But, it feels like I spent the better part of my day in the ladies’ room peeing – probably a side effect.
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