Monday, March 21, 2011

For those who are visual learners

Here is a shot from my latest MRI scan. A girlfriend of mine calls it "The Money Shot". And it is impressive, if I do say so myself:

All the white parts are cysts. All the non-white stuff is actual kidney matter. Now you know why they can't just take out the cysts. It just doesn't work that way. Sadly.

When I went to the orthopedist last week to talk about my hamstring, I told him about my kidneys, and he palpated them, just to see what I was talking about.

"Oh my gosh, that is SO COOL!" he said, while feeling all my cysts. "I wish I had a med student here---this is rare, a total learning experience!"

Yup, that's me. Educating doctors since 2006.

The doctor, who is a runner too, said I should trash talk somebody about my kidneys, like on a basketball court or something. "Oh yeah, well, my kidneys can TOTALLY crush YOUR kidneys!"

Good times, my friends. Goo-hood times.


RobMonroe said...

My diagnosing-GP had just joined his first practice and I was his first *real* diagnosis. He practically skipped down the hallway, and called me to confirm if he was right after sending me to a nephrologist. Doctors are "funny" people.

That picture is incredible. Wow.

Heather O. said...

I guess they just like learning experiences. :)

Anonymous said...

I have a question that maybe someone has discovered during their research- In the scheme of things- vain and unimportant but asking anyway because I want to find out. I have read that PKD kidneys can weigh more than 20 lbs each but is there a way to tell from a stage perspective how big they may be approximately- like normal- 1/2 lb, stage 2- 4 lbs, etc. I bought one of those fat monitors that uses electic current to measure body fat but how does it count those big ole kidneys? Any idea? Ultrasound can measure the size but what about the weight?
Trying to figure out if my BMI is tied to my kidneys.

Mary D said...

oops dont know how I didn't post my name- It's Mary D. not Anonymous.

Heather O. said...

Mary, I've wondered the same thing. My waist is changing, and I can't decide if it's fat or big kidneys. Probably a bit of both, but given how large polycystic kidneys can get, it would be nice to know what the number on the scale is really telling us.

Keith Hiebert said...

Hi PKD people.
I am a 5 month old PKD transplant paitent doing better now than I did on the 4 years of PD dyalisis. ( PD was much better for me than Hemo dyalisis) Old kidneys take up a lot of space and will throw off the BMI because is is partly based on water retained in the body. Go by inches not weight fat takes up more space than lean mussel any way :)
On pain I used to wake up every morning with back pain started taking MSM with some vitamin c in it and in 3 days pain left. Then I added Xango juice made from Mangosteen (a natural antiinflamatory) (this will lower your C-reactive proteen levels) another inflamation issue, it will increse your energy & help your kidney funtion while reducing pain. Xango juice is good for joint pain also my sister had PKD dictors told her to get knee replaced & she never had to while using it for pain releif. Will love to share more as time goes on remember exercise will keep you going longer & farther also I know. God bless Keith

Sharon said...

I am happy to say I have been disappointing my doctors for years. My nephrologist calls me a boring patient because I have managed to stay healthy. I am 53 and have known since I was 18 that I had PKD. My sister who is 4 years older then I has not been so lucky, she has had 2 transplants, one that lasted 12 years and one that she received a little over a year ago. My 19 year old son has been diagnosed and he is having a really hard time dealing with it. We all deal with it in our own ways but I believe a positive attitude and taking good care of yourself is the best defense. I saw what my sister went through and just new if i had to go through that I would want to be as healthy as possible and I believe that has kept me from having to go through what she has.

Alaiyo Kiasi-Barnes said...

Hi Heather,

It was generous to put your kidney scan on your blog. My scan looks much the same as yours, and I even have a color picture from laparoscopic surgery unrelated to my kidneys. The doctors couldn't help themselves from taking a look since they were already in there. I've lived with PKD a long time, and I've known since I turned 22. My mom had it (and my younger sister) so I wasn't surprised by the diagnosis. I'm 52 now and have never been on dialysis (no one in my family has). I can credit my diet (vegetarian/pescetarian) for helping to preserve my kidneys.

Thanks for being brave enough to share your health story with us.