Hello From Denver
So I am currently writing this entry from the "Teen Lounge" in the Children's hospital in Denver, Colorado.
Mom and I got here, after the bumpiest landing we've ever experienced, yesterday at about 4:00PM. The trip was filled with wasabi mayonase (very hot) sandwiches, laughs, and a lot of spilling on my part. I managed to cover my white shirt with random food items, and other stains that I have no idea where they came from, or what their nature is. So basically, it was a normal trip.
I got to the hospital, checked in and started a 24 hour urine collection, and monitoring my blood pressure. The room is nice, and Mom has a window seat to sleep on. Not to bad, due to the fact that she is quite used to sleepin in odd places.
We checked in with the nurses, and I was informed that at 9PM I would start a fast, preparing for getting my blood drawn in the morning.
After that, we made our way down to get some food, and on the way talked of excitment and fears, and the good looking food. :)
In the morning, I woke up at about 7 and got ready for Dr. Melissa to come in and visit.
She arrived and we talked over the program and whatnot, and then we got my blood drawn, which turned into quite the adventure.
After getting my blood drawn (and I handled the needle very well!) I sat up to monitor my blood pressure. I was sitting for about 2 minutes when the tunnel vision started. Everything went black and fuzzy around the edges and I called to Mom, saying that I was going to black out.
Apparently I did, because I remember Mom and the nurse looking at me, and I was laying down. I was sweating, and my ears were ringing. I was quite spooked I must say.
We checked my blood pressure and it was really low. About 73/58 ish. (I usually run in the upper 130s/high 90s).
I was supossed to get an ultrasound of my artery at 10AM today, but we had to wait on that untill my blood pressure was stable.
Dr. Melissa came in and we talked more about the study. And I must say, I'm really excited. The basic idea is that the "pravisit" will stop the cysts from growing, etc. Apparently the abnormal kidneys produce hormones, and then those hormones accelerate the growth of the cysts.
Other things can come out of PKD, such as slower artery dialiation. WHich is why I will be getting the artery ultrasound (tomorrow, because we had to push it back). They will also be checking the left side of my heart, because PKD patients have problems with that area sometimes as well.
Ive been writing a lot, and I know I left a lot out, but I will be on tomorrow to keep everyone up to date!
Lydia
OH! Dad is doing well, of course! He made it into work again today, and drove himself to the lab today for the first time.
Mom and I got here, after the bumpiest landing we've ever experienced, yesterday at about 4:00PM. The trip was filled with wasabi mayonase (very hot) sandwiches, laughs, and a lot of spilling on my part. I managed to cover my white shirt with random food items, and other stains that I have no idea where they came from, or what their nature is. So basically, it was a normal trip.
I got to the hospital, checked in and started a 24 hour urine collection, and monitoring my blood pressure. The room is nice, and Mom has a window seat to sleep on. Not to bad, due to the fact that she is quite used to sleepin in odd places.
We checked in with the nurses, and I was informed that at 9PM I would start a fast, preparing for getting my blood drawn in the morning.
After that, we made our way down to get some food, and on the way talked of excitment and fears, and the good looking food. :)
In the morning, I woke up at about 7 and got ready for Dr. Melissa to come in and visit.
She arrived and we talked over the program and whatnot, and then we got my blood drawn, which turned into quite the adventure.
After getting my blood drawn (and I handled the needle very well!) I sat up to monitor my blood pressure. I was sitting for about 2 minutes when the tunnel vision started. Everything went black and fuzzy around the edges and I called to Mom, saying that I was going to black out.
Apparently I did, because I remember Mom and the nurse looking at me, and I was laying down. I was sweating, and my ears were ringing. I was quite spooked I must say.
We checked my blood pressure and it was really low. About 73/58 ish. (I usually run in the upper 130s/high 90s).
I was supossed to get an ultrasound of my artery at 10AM today, but we had to wait on that untill my blood pressure was stable.
Dr. Melissa came in and we talked more about the study. And I must say, I'm really excited. The basic idea is that the "pravisit" will stop the cysts from growing, etc. Apparently the abnormal kidneys produce hormones, and then those hormones accelerate the growth of the cysts.
Other things can come out of PKD, such as slower artery dialiation. WHich is why I will be getting the artery ultrasound (tomorrow, because we had to push it back). They will also be checking the left side of my heart, because PKD patients have problems with that area sometimes as well.
Ive been writing a lot, and I know I left a lot out, but I will be on tomorrow to keep everyone up to date!
Lydia
OH! Dad is doing well, of course! He made it into work again today, and drove himself to the lab today for the first time.
Comments
How long will you be there? How is your Mom doing?
My son (diagnosed with ADPKD) really has enjoyed reading your blogs. We just wanted to wish you luck with the study and we will be thinking about you!
My son was diagnosed with APDKD in April of this year, he is 12. I just wanted you to know that we enjoy reading your blogs very much! We wanted to wish you luck in the study!