I’m feeling grouchy. Today was the big day – pulmonary function test day. I’d done a pretty good job of not getting anxious until the night before, but amazingly, I slept pretty good. I managed to hold it together through my morning interviews, and then it was off to KU Medical Center.
I said a bit of a prayer before leaving home (since I had such mixed feelings about this test) and just sort of left it all in God’s hands. Whatever was meant to be would be.
I arrived at the pulmonary lab, which is a bit of a hike across the KUMed campus up on the fourth floor of one of the older buildings. The tech was very nice and I puffed, and puffed, and puffed and then I puffed some more. I was starting to get a bit worried because I was getting dizzy from all the puffing.
At the end the tech asked me when I was going to see Dr. Kennedy again. I explained I was having this test done for NIH, and didn’t really have an appointment planned – but I’d make one if that’s what I needed to do to get the test results. He printed me out a preliminary report.
I get so anxious about these test results. I took the paper and felt like my future was printed on it. I promised myself I’d wait to look at it until I got to the hospital lobby so I would have a place to sit down and read it carefully. I knew I wouldn’t make it all the way home without looking!
I didn’t make it off the elevator.
The first line was FVC (L) and it was 69. My heart dropped into my shoes. My FVC a year ago was 94. That’s a huge drop. But, then I looked further down the page and there was line that said FEV1/FVC (%) and it was 105. I didn’t remember the reports from the NIH having the (L) after them, nor did I remember a FEV1/FVC line. Did I just not remember? Was I really looking at the right score? A 105 would be fantastic news. I’d be on cloud nine! I wouldn’t be eligible for the trial, but I’d miss it by quite a bit, which would be okay with me. But, which score was the right one?
I looked for the other score that had everyone a bit concerned. My DLCO was 53. A year ago it was 60. This is not good. If my FVC was 105, how could my DLCO be 53? Did that mean it was 69?
I tried to call Donna, but couldn’t reach her. Being impatient, I called Karen and Elsie to see if they could remember from looking at their reports. None of us was sure which number was the one NIH wanted.
I felt light headed. Was it from the test, or the results? I sat for about a half hour in the lobby of the hospital for fear if I tried to leave the funny feeling in my head would get worse.
I was supposed to go home and work on my story, but I knew there was no way I’d be able to concentrate on it. I decided to walk up 39th Street and poke around in the shops. My brain felt like someone was inside pushing the channel changer every two seconds. It jumped from one thought to another, some HPS related and some not, randomly. It seemed unable to settle on a thought process.
I felt frustrated looking in the shops. They did nothing to distract me, so I got a latte and called for a ride.
When I got home I called Kevin. Amazingly, he was at his phone so I got him on the first try. Yes, some mercy! Put me out of my misery – tell me which number is “the” number!
It was the 69, but Kevin hastened to add that I shouldn’t get upset just yet. It seemed pretty unlikely to him that I’d drop that fast. He suspected something wasn’t right about the results. When I talked to Donna later that was her first response.
“I was just with you in San Diego not that long ago, and I’m pretty sure you’re FVC isn’t at 69,” she said. This was a relief – but begs the question. So, if the test was flawed, then what the heck is my FVC?
Once again Kevin asked me if I was having more trouble breathing. Am I getting more winded with activity etc. I hate these questions! I always think that overall I’m having more trouble because I’m paranoid. I know that I can have good days and bad days and that they can vary a lot. And in case anyone hasn’t noticed, I’m not exactly in Olympic athlete condition either! If I get winded walking seven blocks to the grocery, is it because I’m in lousy shape? Or, should that be no problem because I live in a place with almost no public transit, and therefore walk all the time? I weighed the same thing (approximately) a year ago, and somehow the grocery store didn’t seem like such a chore then.
I HATE this line of questioning. If I say yes, and then get to NIH and puff a great test, will they believe me when something really happens? Or, has something really happened and it just happened so gradually over a year that I wasn’t aware enough to put up the alert flags?
Kevin then asked if I really tried my hardest on the test. Geeeeshhhh…this better be a question he was asking because he has to ask – of course I really tried. To me the best news would be that exercising more and being on my asthma meds. had actually helped. (Hasn’t done a damn thing for my weight mind you.) Then he asked if I was taking my medication. Come on Kevin, this is me we’re talking about! I’m human. I won’t say I’ve never fallen asleep without taking my pill – but that’s rare. I’m pretty good about remembering those kinds of things.
So now I’m in a kind of limbo. I’ll probably have to repeat the test again. In the meantime, even if I think it’s wrong, that 69 number is haunting me.
I said a bit of a prayer before leaving home (since I had such mixed feelings about this test) and just sort of left it all in God’s hands. Whatever was meant to be would be.
I arrived at the pulmonary lab, which is a bit of a hike across the KUMed campus up on the fourth floor of one of the older buildings. The tech was very nice and I puffed, and puffed, and puffed and then I puffed some more. I was starting to get a bit worried because I was getting dizzy from all the puffing.
At the end the tech asked me when I was going to see Dr. Kennedy again. I explained I was having this test done for NIH, and didn’t really have an appointment planned – but I’d make one if that’s what I needed to do to get the test results. He printed me out a preliminary report.
I get so anxious about these test results. I took the paper and felt like my future was printed on it. I promised myself I’d wait to look at it until I got to the hospital lobby so I would have a place to sit down and read it carefully. I knew I wouldn’t make it all the way home without looking!
I didn’t make it off the elevator.
The first line was FVC (L) and it was 69. My heart dropped into my shoes. My FVC a year ago was 94. That’s a huge drop. But, then I looked further down the page and there was line that said FEV1/FVC (%) and it was 105. I didn’t remember the reports from the NIH having the (L) after them, nor did I remember a FEV1/FVC line. Did I just not remember? Was I really looking at the right score? A 105 would be fantastic news. I’d be on cloud nine! I wouldn’t be eligible for the trial, but I’d miss it by quite a bit, which would be okay with me. But, which score was the right one?
I looked for the other score that had everyone a bit concerned. My DLCO was 53. A year ago it was 60. This is not good. If my FVC was 105, how could my DLCO be 53? Did that mean it was 69?
I tried to call Donna, but couldn’t reach her. Being impatient, I called Karen and Elsie to see if they could remember from looking at their reports. None of us was sure which number was the one NIH wanted.
I felt light headed. Was it from the test, or the results? I sat for about a half hour in the lobby of the hospital for fear if I tried to leave the funny feeling in my head would get worse.
I was supposed to go home and work on my story, but I knew there was no way I’d be able to concentrate on it. I decided to walk up 39th Street and poke around in the shops. My brain felt like someone was inside pushing the channel changer every two seconds. It jumped from one thought to another, some HPS related and some not, randomly. It seemed unable to settle on a thought process.
I felt frustrated looking in the shops. They did nothing to distract me, so I got a latte and called for a ride.
When I got home I called Kevin. Amazingly, he was at his phone so I got him on the first try. Yes, some mercy! Put me out of my misery – tell me which number is “the” number!
It was the 69, but Kevin hastened to add that I shouldn’t get upset just yet. It seemed pretty unlikely to him that I’d drop that fast. He suspected something wasn’t right about the results. When I talked to Donna later that was her first response.
“I was just with you in San Diego not that long ago, and I’m pretty sure you’re FVC isn’t at 69,” she said. This was a relief – but begs the question. So, if the test was flawed, then what the heck is my FVC?
Once again Kevin asked me if I was having more trouble breathing. Am I getting more winded with activity etc. I hate these questions! I always think that overall I’m having more trouble because I’m paranoid. I know that I can have good days and bad days and that they can vary a lot. And in case anyone hasn’t noticed, I’m not exactly in Olympic athlete condition either! If I get winded walking seven blocks to the grocery, is it because I’m in lousy shape? Or, should that be no problem because I live in a place with almost no public transit, and therefore walk all the time? I weighed the same thing (approximately) a year ago, and somehow the grocery store didn’t seem like such a chore then.
I HATE this line of questioning. If I say yes, and then get to NIH and puff a great test, will they believe me when something really happens? Or, has something really happened and it just happened so gradually over a year that I wasn’t aware enough to put up the alert flags?
Kevin then asked if I really tried my hardest on the test. Geeeeshhhh…this better be a question he was asking because he has to ask – of course I really tried. To me the best news would be that exercising more and being on my asthma meds. had actually helped. (Hasn’t done a damn thing for my weight mind you.) Then he asked if I was taking my medication. Come on Kevin, this is me we’re talking about! I’m human. I won’t say I’ve never fallen asleep without taking my pill – but that’s rare. I’m pretty good about remembering those kinds of things.
So now I’m in a kind of limbo. I’ll probably have to repeat the test again. In the meantime, even if I think it’s wrong, that 69 number is haunting me.
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