Thank God It’s Friday! (Well, actually it’s Saturday, but I fell asleep before I got this posted.) I don’t think I’ve been so happy to see a Friday in a long time – and I look forward to Fridays all week long.
This was just a rough week. All week I never did hear from my doctor about the pulmonary function test. I have no idea if anyone has sent the final report to Kevin, or what Dr. Kennedy even thinks of the results. When I called for the third time, I was told that it takes ten days to process test results – and not to worry, if it was an emergency the test results are reviewed daily and someone would have called. The pulmonary lab told me my doctor would have the report by late Monday. That was five days ago.
The only way a PFT would be an emergency would be if I were upstairs in the hospital on a vent or something. It isn’t that kind of test. But, I would have thought that if someone had noticed my FVC had fallen from 94 to 69, they might have wanted to have a conversation with me about it. I said on the messages that I left that I was trying to work this out with NIH etc. At the very least I’d like to know if anyone faxed the report to Kevin.
I love my doctor, but the support staff sometimes drives me nuts. You go to all this effort to educate your doctor about your rare disease, and then some gatekeeper, who doesn’t get the whole HPS or NIH thing, is probably sitting on this report somewhere. This drives me nuts. It’s like when you’ve got a cold, and you try to get a same-day appointment, or at least the following day – but my doctor is never available. So, I see someone else and it’s like starting all over again to try to get them to understand why you’re there for a cold, and not just pat you on the head and send you home to drink orange juice.
This has also been a rough week because I’ve been in ostomy hell. Usually if I’m having a lot of leaking, I can tell why. There’s some skin ulcer, or stoma bleeding problem or something. But this time everything looked great – yet I had to go flying out of work twice this week. By the time I’d had it leak five or six times, I was having skin problems. So, finally I had to, yep you guessed it, miss another day of work to go to see the ostomy nurse – who pretty much didn’t have anything to tell me. I didn’t sleep well for several nights because either I was leaking, or I was afraid I’d leak. That doesn’t exactly help one’s mood, or one’s writer’s block. Can we say WHHHIIIIIINNNNNEEEEE!
Yes, I was happy to see this week committed to the history books.
This was just a rough week. All week I never did hear from my doctor about the pulmonary function test. I have no idea if anyone has sent the final report to Kevin, or what Dr. Kennedy even thinks of the results. When I called for the third time, I was told that it takes ten days to process test results – and not to worry, if it was an emergency the test results are reviewed daily and someone would have called. The pulmonary lab told me my doctor would have the report by late Monday. That was five days ago.
The only way a PFT would be an emergency would be if I were upstairs in the hospital on a vent or something. It isn’t that kind of test. But, I would have thought that if someone had noticed my FVC had fallen from 94 to 69, they might have wanted to have a conversation with me about it. I said on the messages that I left that I was trying to work this out with NIH etc. At the very least I’d like to know if anyone faxed the report to Kevin.
I love my doctor, but the support staff sometimes drives me nuts. You go to all this effort to educate your doctor about your rare disease, and then some gatekeeper, who doesn’t get the whole HPS or NIH thing, is probably sitting on this report somewhere. This drives me nuts. It’s like when you’ve got a cold, and you try to get a same-day appointment, or at least the following day – but my doctor is never available. So, I see someone else and it’s like starting all over again to try to get them to understand why you’re there for a cold, and not just pat you on the head and send you home to drink orange juice.
This has also been a rough week because I’ve been in ostomy hell. Usually if I’m having a lot of leaking, I can tell why. There’s some skin ulcer, or stoma bleeding problem or something. But this time everything looked great – yet I had to go flying out of work twice this week. By the time I’d had it leak five or six times, I was having skin problems. So, finally I had to, yep you guessed it, miss another day of work to go to see the ostomy nurse – who pretty much didn’t have anything to tell me. I didn’t sleep well for several nights because either I was leaking, or I was afraid I’d leak. That doesn’t exactly help one’s mood, or one’s writer’s block. Can we say WHHHIIIIIINNNNNEEEEE!
Yes, I was happy to see this week committed to the history books.
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