Today was a better day than yesterday for which I'm thankful. Tonight, Paul Burton and I went shopping at Wal-Mart. I was able to get everything on my list. However, I'm most thankful for the energy I had to go shopping and for a brother who'd take me.
The weather was cooler today and less humid, so tonight I played on the swings with Qavah and Paul Burton. The wind rushed past my long "hair," and that was fun until this "hair" (my wig) flew straight off my head and into the grass. I said to Qavah and PB, "Guess my hair didn't want to swing anymore!" Everyone laughed.
I was able to talk with the nurse at the endocrinologist's office several times today. She was helpful and patient. She finally spoke with a doctor during his lunch break who had seen me once awhile back when I was in the hospital. Thus, he was familiar with my complex medical issues. After reviewing a current list of medications and lab work, he advised me take extra Prednisone until I see my regular endocrinologist next week. He said the extra Prednisone should counter the low sodium and adrenal issues. The dosage has been doubled of what I normally take, which is not my favorite course of action, but for now, I see no other way to make it through. And I pray it will continue to work the rest of this week.
Finally, I spoke with my primary care phsycian's referral nurse to begin the paperwork needed to set up an appointment with a pulmonologist. I saw one a year ago just before my hysterectomy where I took my first ever pulmonary function test (PFT). At that time, my lung capacity was at 73%. This PFT number became my baseline. However, because pulmonary fibrosis is a part of HPS, I'm supposed to have yearly PFTs done. And I wouldn't be surprised if that PFT number has gone down a bit within the last twelve months. Today's referral process is the first step in establishing a relationship with a pulmonologist that I'll probably have for several years to come.
The weather was cooler today and less humid, so tonight I played on the swings with Qavah and Paul Burton. The wind rushed past my long "hair," and that was fun until this "hair" (my wig) flew straight off my head and into the grass. I said to Qavah and PB, "Guess my hair didn't want to swing anymore!" Everyone laughed.
I was able to talk with the nurse at the endocrinologist's office several times today. She was helpful and patient. She finally spoke with a doctor during his lunch break who had seen me once awhile back when I was in the hospital. Thus, he was familiar with my complex medical issues. After reviewing a current list of medications and lab work, he advised me take extra Prednisone until I see my regular endocrinologist next week. He said the extra Prednisone should counter the low sodium and adrenal issues. The dosage has been doubled of what I normally take, which is not my favorite course of action, but for now, I see no other way to make it through. And I pray it will continue to work the rest of this week.
Finally, I spoke with my primary care phsycian's referral nurse to begin the paperwork needed to set up an appointment with a pulmonologist. I saw one a year ago just before my hysterectomy where I took my first ever pulmonary function test (PFT). At that time, my lung capacity was at 73%. This PFT number became my baseline. However, because pulmonary fibrosis is a part of HPS, I'm supposed to have yearly PFTs done. And I wouldn't be surprised if that PFT number has gone down a bit within the last twelve months. Today's referral process is the first step in establishing a relationship with a pulmonologist that I'll probably have for several years to come.
