Wednesday, January 6, 2010

Nephrology Today - Tuberous Sclerosis Update

Bup's first appointment with Nephrology since the Tuberous Sclerosis diagnosis.

This appointment was necessary because R does have tubers/cysts/tumors in his right kidney, lower pole which is quite "normal" with TSC. Having explained that, there have been no side effects yet often there aren't until kidney failure has set in or they have become malignant. Also PKU is very common with TSC as the gene is side by side. So, it would be nice to know if R's TSC is TSC1 or TSC2 which we will not be finding out as those genetic tests are not done in Canada...and the region is in a deficit which means no spending!

The outcome of today's appointment with the Nephrologist?

Nothing. No new information.

We saw the Resident....who had NOT read Bup's file and had to be filled in starting at day one. Ugh.

Then we waited....and waited...

until I let the staff know that we would be leaving because I also had to pick up W from school and time was a tickin'!

Well, that got Dr. Nephrologist out of his cozy office! Dr. N spoke with me in the waiting area. (So much for confidentiality!) The conversation was also more of me filling him in and advising that it is 8 months since the last abdominal ultrasound at which time the tubers had shown growth so time for another which he agreed.

And I was only 2 minutes late for picking up W from school!

Lesson of the TSC Day? Doc's do not pre-read files, and they will get their tuckas in gear if prompted...SOOOO....always be the assertive, maybe a little impatient patient....that's what gets things shakin' at the Dairy Queen Honey!


  1. So if they tell you to wait, they will come back, and in 15 minutes(reasonable amount of time???depending on your mood) tell them you have to go, can not wait for them any longer, they just miraculously float you to URGENT, will see you now! Can't wait to try this one out on the next poor unsuspecting Resident. Good to know!


  2. It's all just so rude, isn't it?
    Keep em on their toes.

    No news is good news??