Today has been a very long day. Several of you have sent me e-mail over the past few days. Thank you so much for all the good wishes and I’ll get around to answering some of the mail soon.
I had hoped I’d have internet access at NIH – in fact had planned on catching up on the blog – but as an outpatient apparently I don’t get such easy access. I have to go to the library, and there’s a waiting list.
NIH is definitely much easier as an inpatient – at least from my point of view. Being an outpatient has been a real hassle.
I’d blog more about the tests etc. but I’m really, really tired. So, here are a few of the highlights. So far it looks like every test has come back normal except my six minute walk test. The blood work so far has been great. The EKG, Echo etc. were all good. But, the six-minute walk test is a bit of a worry.
For this test they attach a monitor to your finger and have you walk up and down the hall as fast as you can for six minutes. I had these clunky shoes on, and I couldn’t walk my fastest. But, the nurse said not to worry so I just walked up and down the hall instead of running. I was amazed at how tired I was in just six minutes. And, sure enough, my oxygen saturations fell seven percent. They’re still okay (no breaking out the oxygen tanks just yet), but it isn’t a good trend and seems to confirm the tests last month that seemed to indicate pulmonary fibrosis is starting in my lungs. It also makes me wonder, if my saturation levels fell that much when I wasn’t even trying my hardest, what does it do when I’m running home with dry cleaning and groceries in my arms? No wonder I feel so tired after running errands these days.
The upside is no one seems to think the nodules on my lung are cancerous and it looks like I’ll be admitted to the drug trial. Kevin says he hopes to enroll me either tomorrow afternoon or Wednesday morning – depending on when Dr. Gahl has a chance to talk to me. I still have to do another round of blood work and another round of urine tests. (They took 14 tubes of blood today.)
More stories about the tests later, and the pee saga! Oh my!
I had hoped I’d have internet access at NIH – in fact had planned on catching up on the blog – but as an outpatient apparently I don’t get such easy access. I have to go to the library, and there’s a waiting list.
NIH is definitely much easier as an inpatient – at least from my point of view. Being an outpatient has been a real hassle.
I’d blog more about the tests etc. but I’m really, really tired. So, here are a few of the highlights. So far it looks like every test has come back normal except my six minute walk test. The blood work so far has been great. The EKG, Echo etc. were all good. But, the six-minute walk test is a bit of a worry.
For this test they attach a monitor to your finger and have you walk up and down the hall as fast as you can for six minutes. I had these clunky shoes on, and I couldn’t walk my fastest. But, the nurse said not to worry so I just walked up and down the hall instead of running. I was amazed at how tired I was in just six minutes. And, sure enough, my oxygen saturations fell seven percent. They’re still okay (no breaking out the oxygen tanks just yet), but it isn’t a good trend and seems to confirm the tests last month that seemed to indicate pulmonary fibrosis is starting in my lungs. It also makes me wonder, if my saturation levels fell that much when I wasn’t even trying my hardest, what does it do when I’m running home with dry cleaning and groceries in my arms? No wonder I feel so tired after running errands these days.
The upside is no one seems to think the nodules on my lung are cancerous and it looks like I’ll be admitted to the drug trial. Kevin says he hopes to enroll me either tomorrow afternoon or Wednesday morning – depending on when Dr. Gahl has a chance to talk to me. I still have to do another round of blood work and another round of urine tests. (They took 14 tubes of blood today.)
More stories about the tests later, and the pee saga! Oh my!
Comments