Hi Everyone,
My appointment for Monday is weighing heavily on my mind these past few days. This doctor is new to me and while my first appointment went well, relatively speaking, I'm not sure what the results of asking for such a script will be. Valcyte's not exactly an everyday type of drug!
Hopefully, they'll see the pleading in my eyes and I won't have to beg for the only drug that has worked in improving my general fatigue and PEM.
The past few days haven't been kind. Thursday, I saw a new-to-me cardiologist who was very nice and I think we might have a good working relationship patient-to-doctor, but I apparently shouldn't have taken a caffeine tablet an hour before my appointment! My blood pressure the first time was in the 170s systolic and the lying down repeat was in the 190s systolic... They did a final, triple averaged set before I left that went down to 155/100. Still much higher than my appointment on 2/8/19. Cripes, I had POTS just 5 years ago!
Friday was a horrible day at work - knew it was going to be. Had the most number of patients in over a year (I'm a peri-anesthesia RN these days). Had tried resting up for a few days beforehand to get ready, but it still sucked. Got about 80% of the way through my 6 hour shift and nearly collapsed with lack of muscle strength. Sat down in a chair to recover and reclined it as far as possible. Just one more clue that I"m slowly declining, unfortunately.
TL;DR -> Nervous about getting a script for Valcyte as things are getting worse.
Brent
My appointment for Monday is weighing heavily on my mind these past few days. This doctor is new to me and while my first appointment went well, relatively speaking, I'm not sure what the results of asking for such a script will be. Valcyte's not exactly an everyday type of drug!
Hopefully, they'll see the pleading in my eyes and I won't have to beg for the only drug that has worked in improving my general fatigue and PEM.
The past few days haven't been kind. Thursday, I saw a new-to-me cardiologist who was very nice and I think we might have a good working relationship patient-to-doctor, but I apparently shouldn't have taken a caffeine tablet an hour before my appointment! My blood pressure the first time was in the 170s systolic and the lying down repeat was in the 190s systolic... They did a final, triple averaged set before I left that went down to 155/100. Still much higher than my appointment on 2/8/19. Cripes, I had POTS just 5 years ago!
Friday was a horrible day at work - knew it was going to be. Had the most number of patients in over a year (I'm a peri-anesthesia RN these days). Had tried resting up for a few days beforehand to get ready, but it still sucked. Got about 80% of the way through my 6 hour shift and nearly collapsed with lack of muscle strength. Sat down in a chair to recover and reclined it as far as possible. Just one more clue that I"m slowly declining, unfortunately.
TL;DR -> Nervous about getting a script for Valcyte as things are getting worse.
Brent
