Photos of huge PKD kidneys - Warning: not for the squeamish!!

[okarol]

These photos are from a woman's blog "a journal of sorts about my dialysis and any other health concerns." http://asteriskann.blogspot.com/ PKD & Dialysis . . . Where I Tell It Like It Is

[Romona]

It was hard for me to imagine what PKD does to someone.

[donnia]

WOW!

[monrein]

Oh man.  So tragic.

[Sluff]

Wow. 

[pelagia]

His doc didn't get a picture of Stephen's kidney's but said they were the biggest he'd ever seen.  In my mind that is pretty much what they looked like. I have seen other pictures before.  Stephen lost 30 lbs over 10 days between the nephrectomies, dialysis and not eating.

[Ang]

ah  so   thats  what  my  kidney  loks  like.

[twirl]

I am squeamish but since I am pkd I had to look
it is worse than I thought
what's the use of losing weight if I am carrying those two things around and they only get bigger

[pelagia]

what's the use of losing weight if I am carrying those two things around and they only get bigger

You will have a better chance of lowering your blood pressure, lowering your risk of diabetes, and lowering the wear and tear on your joints with every pound of weight loss.
 
Take care of yourself Twirl.  We want you around for a long time. 

[Rerun]

                                   

[okarol]

                                   

Sorry to make you lose your lunch Rerun!

[paris]

Amazing photo!

[Zach]

Make room for Daddy!

[Chris]

The thing that comes to mind for me is, Why did the doctors or patient wait so long to have those two kidney's removed?" They almost look the size of a lung, not to mention the weight those must have had.

[okarol]

The kidneys are usually left in place, depending on what caused them to fail. With PKD the cystic kidneys can become an area of reoccurring infections. Enlarged kidneys cause pain, which is another consideration. A bilateral nephrectomy is not something to go into lightly, it is major surgery. Some hospitals remove both kidneys prior to transplant, others afterward. Some centers are doing simultaneous bilateral transplants, where the kidneys are removed and then a kidney transplant is done in the same operation.

[Chris]

Pain definiely comes to mind with those kidney pictures. Since I do not know the whole story to understand the decisions made, the mind just wonders. Such as take one out first and do the other one later to give some relief. Without knowing what the pateints circumstances or doctors thought process one only can assume. And you know what assuminging is, as partial quoted from Under Seige 2, "Assumption is the mother of all  .......... up's"

Darn, I gotta post that one in the favorite movie quotes topic.

[Pierre]

Mine are 30 cm by 10 cm. Last time the doc took an echo, he couldn't get one whole kidney into one photo. But I don't have any pain or discomfort so I'll keep them for now 

[pelagia]

I agree that it's a good idea to hold on to one's own kidneys for as long as possible.  That is exactly what my husband did.  But his breathing was compromised and he had lost his appetite (in part we thought due to having no room for his stomach).  And the kidneys were so large that they were concerned about where to put a transplant.  He had his taken out seven weeks before his set transplant date.  Having both surgeries at the same time is safe (statistically), according to what I read at the time, but our hospital was not large enough to handle the surgeries the way a university hospital would be.

[paul.karen]

WOW

The last ultrsound i had the tech said she had never seen so many cysts in a kidney.  That made me feel so good :-(

But i cant imagine that they compare to those at all.
That is just amazing to say the least.  At least IMO...

[Brightsky69]

Wow.....that is some rough stuff. I don't have PKD I've got IGA Nephropathy and as my doc put it my kidneys are "shriveled little prunes".  It's hard to imagine the body having enough room for something so big.

[kimcanada]

wow I would never thought that they could ever be that big, the people that have this can you see then?  is your back swollen?  Sorry if these questions seem dumb 

[paul.karen]

Not a dumb question Kim.

My back was hurting so bad i went in for a deep tissue massage.  The next day i was urninating blood.  This was how i learned i have PKD>  i was hypertensive?  And thrown in ICU for three days.  And told i have PKD

Just to be told by my doctor that kidneys do not casue pain.  Even though they are full of cyysts.?

I dont care what any doctor says the kidneys n that photo must have casued alot of pain.
Also the cysts can fall off and you have to pass them when you pee.  That can hurt as well :-(

[kimcanada]

Freakin OUCH

that is terrible, do they usually remove them when they are like that, I would think that something being that big in your body would affect other things...

What a sin people with PKD  xoxoxoxo to all of you

[pelagia]

I would say the look is definitely "9 months pregnant."  Beginning about two years before Stephen's transplant the occasional inconsiderate person would make a comment to me about how fat he was getting.  People would make jokes about his beer belly (mind you he had hardly had a drink in years).  And then after the surgery some people said, "Oh your were right, it really was the kidneys."

Despite the size of his kidneys, Stephen never had significant pain associated with the kidneys themselves.  He did have side effects because they took up so much space and, of course, due to declining function.  Of his two brothers with PKD (both younger), one has had problems with back pain and bleeding cysts for years and the other had kidney stones, which I believe are more common in those with PKD relative to the general population.

[Pierre]

I'd like to think that I'm 'skinny' 

In the past my weight was +/- 80 kg, and I'm 1.80 m tall, so quite normal.  A few years ago when kidneyfunction went down, I was asked to lower the protein intake to 80 % of the normal diet, and as a result in 6 months I lost +/- 10 kg, which resulted in scaring my wife and friends a bit. Since dialysis I gained again some weight, up to 73 kg.

I agree that you don't remove the kidneys as long as they don't cause continuous pain or infection. The 'good' thing about PKD is that the function deteriorates quite slowly, so you are able to keep some function (and peeing) while on dialysis, which is a good thing. I started dialysis in December 2007 with 11 % function, while now I still have 9 % steady.