I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: okarol on October 20, 2008, 02:45:06 PM
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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
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It was hard for me to imagine what PKD does to someone.
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WOW!
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Oh man. So tragic.
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Wow. :thumbdown;
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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.
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ah so thats what my kidney loks like.
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I am squeamish but since I am pkd I had to look :o
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 :(
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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. :cuddle;
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:puke;
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:puke;
Sorry to make you lose your lunch Rerun!
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Amazing photo!
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Make room for Daddy!
8)
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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.
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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.
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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.
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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 :)
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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.
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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...
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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.
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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 :shy;
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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 :-(
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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
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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.
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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.
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AT my last ultrasound thy seed that my Kidneys where 6 times the normal sizes and guest the wt. at 7or8 pd. I do have a lot of back aces and my right side gives me a bad time to. But I still have a GFR of 18 and my creating is 2.8. The photo's are amassing god bless that pt. for all thy have gone thouw Carol
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Yikes! My PKD kidneys were about half that size at last ultrasound, and I already have to pee too frequently from the pressure! I can't imagine what the shear volume of those would do to your body.
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Hey Ruth, great to have you back! :flower;
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All I can say is......
Bring on a Transplant so I can get the freaking things OUT.
I am with Rerun :puke;
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So I am one of the few, I like medical/surgical photos. ;D I also have an MRI that proves my head is not up my :sir ken; :rofl; :rofl; :rofl; :rofl; :rofl;
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So I am one of the few, I like medical/surgical photos. ;D I also have an MRI that proves my head is not up my :sir ken; :rofl; :rofl; :rofl; :rofl; :rofl;
see you learn something new everyday... I didn't know that there is a test that proves that my head is not up my :sir ken; ;)
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So I am one of the few, I like medical/surgical photos. ;D I also have an MRI that proves my head is not up my :sir ken; :rofl; :rofl; :rofl; :rofl; :rofl;
see you learn something new everyday... I didn't know that there is a test that proves that my head is not up my :sir ken; ;)
Guess I'm partially prepaired for marriage then :rofl; :rofl; :rofl; :rofl;
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Hey Ruth, great to have you back! :flower;
Hi, Pelagia, I just don't have as much time as I'd like to hang around, but try to check in from time to time. Nice to see you!
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damm...... i was hungry........ewww
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Holy cow!! That is unreal. :o
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I too have PKD. I don't know how big mine are exactly but when at the hospital before ending up on dialysis they said they are the biggest they have ever felt. And I can feel them now, it's a strange feeling.
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:puke; Omggggggggggggggggggggggg HORRIBLE
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Another image below - this one from one of our members Nathan's blog
Nathan's PKD
The chronicles of a guy afflicted with polycystic kidney disease and how he deals with this disease, dialysis, and his January 2007 kidney transplant.
http://nmccart.blogspot.com/
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For those of us who have been pregnant, imagine having twins, and each of them weighing about 8 pounds. Good grief!!!!!
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Oh my! :o :(
I thought nephrotic syndrome/FSGS was bad- my heart goes out to anyone with PKD.
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Been there, done that. I had my left pkd kidney removed in Jan due to pain and infection.
The right one is still in. It was bigger than 27cm (normal kidney - 11cm)
The urine-filled cysts are ideal places for bacteria. I took antibiotics for 6 months non-stop to try to get them out. (Mycrodantine) It only brought the bacteria numbers down. It could never get rid of the infection completely. So it feels like a permanent kidney infection. VERY painfull.!
The operation was huge. I am still recovering and have some discomfort.
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ROFL that is so funny!
So I am one of the few, I like medical/surgical photos. ;D I also have an MRI that proves my head is not up my :sir ken; :rofl; :rofl; :rofl; :rofl; :rofl;
see you learn something new everyday... I didn't know that there is a test that proves that my head is not up my :sir ken; ;)
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I had my PKD kidneys removed and I lost 25 pounds instantly. I had reoccuring infections, complex cyst which made them think I had cancer and they were very very painful. I could only eat very small meals because I just could not breathe if I ate too much. The minute I woke up in the OR recovery room I felt a whole lot better and could finally breathe normal. I still laugh when I am sitting straight up at the table eating and not slouching back to make room for 1 little bite.
I don't regret having my PKD kidneys removed.
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Unbelievable Photos! As a person with PKD myself, when I recently talked to the transplant team (being interviewed for transplant list), my first question to them was, "can I have my old kidneys removed when getting a transplant?" I know how uncomfortable polycistic kidneys are. While mine are no way near that size, the cyst keep forming and the kidneys keep getting bigger. Can you imagine how heavy those kidneys were? By the way, their answer was, "they would determine removal of old kidneys at time of transplant". My mother, who also had the disease, had a transplant and they made her wait to have her old kidneys removed at a different scheduled surgery.
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I came across this today - had not ever seen this Time Magazine before
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Comparison
Polycystic kidney on left and a healthy kidney on the right.
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OK almost last one.
PKD removal
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That is wild
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That's got to be so uncomfortable!
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I feel for anyone who has PKD. I have IGA and my doc described my native kidneys as shriveled up little prunes.
Thankfully not those big monsters.
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Incredible pictures. I hope Carl's never get this big. :thumbdown;
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ahhhhhhhhhh. omg...those are disgusting!!! I would rather know what they look like though.. so thanks...
Transplant Doc said mine are small for PKD kidneys....
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I also have PKD, and yes they do make me look "9 months pregnant" which is unfortunate. At my last attempted sono (2008), they were too large to be measured. What I don't get though, is that as my doctor has just recently referred me to the transplant docs, everyone in my center has made it a point to tell me that my BMI will have to be at a certain percentage before I will be considered for transplant. I don't understand how they can squabble over BMI when obviously my kidney's size is pushing my BMI just up over the limit of what it should be. I can't argue that losing weight is beneficial for any reason, but do we really need to get caught up on the BMI when it isn't a true BMI of my body weight? Any thoughts on that?
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Omg, I thought I was the only one who looked like I was 9 mos pregnant! So, its due to the enlarged cysts? Does everyone have this with PKD? Will that look go away if I have a nephrectomy?
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Autosomal dominant polycystic kidney disease (ADPKD)
From: http://www.brown.edu/Courses/Digital_Path/systemic_path/renal/pcd2.html
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I bet she had to buy a new wardrobe.
Hammett's native kidneys atrophied away. His cystic disease was a random mutation.