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Right Kidney Ptosis
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happygirl74 posted:
I was just diagnosed with Right Renal Ptosis. I had an IVP while supine and erect that states I have extrinsic compression of the poximal right ureter presumably related to a crossing vessel. There is some mild fullness of the proximal right ureter without significant holdup or obstruction. I have been chasing this diagnosis for months.Half of my right kidney overlies the right iliac crest. Because I do not have a stong obstruction the doctor thinks that I should have no symptoms. I am in a lot of pain. It feels like my kidney is sitting on top of my colon which has caused me bowel problems. I can not stay on my feet for long periods of time before I start having pain. If you have any experience with this or information I would appreciate it. Thank you!
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reneelynn78 responded:
I was diagnosed with right nephroptosis (floating kidney) in 2005. It took a while to diagnose me, since the doctors that were treating me did a cat scan while i was laying down and found nothing. When you have this condition and you lay down the kidney falls back into its place. It was only when I later (almost 8 months later) saw a urologist for frequent UTI's that he palpated my abdomen while standing and behold my right kidney falls into my pelvic area. In 2005 up to now I suffered from flank pain, frequent UTI's and abdominal pain under my right rib cage. This is a very painful condition. There are times when I cannot even bring myself to eat, therefore I lose weight, and the pain worsens.
Last week I had excrusiating pain in my abdomen and was taken by ambulance to the hospital where they diagnosed me with "Ileus" of the small bowel. Apparently my small intestines stopped working. My urinalysis came back with ketones, blood and protein in my urine; I had an elevated white blood count and an electrolyte imbalance. I explained that I had a floating kidney and the doctor had no idea what that was (figures). They did admit me to the hospital for observation of possible appendicitis. I was a little disappointed that they did not even consider my kidney condition, which can cause all of my syptoms that I had.
With a floating kidney, when standing or even sitting the tube from the kidney to the bladder is kinked and sometimes even blocked which prevents the kidney from being able to drain. It can cause lots of problems from UTI's all the way to Renal (Kidney) failure.
During the past few years my symptomatic nephrotosis has gotten significantly worse to the point where I am considering surgery. I have a follow up appointment tomorrow where I will ask for a referral to see a specialist. It's getting too painful too quick and my labs are out of wack.
A lot of people with this disorder can live painless normal lives, unfortunately I and you are not one of them.
I say see a specialist, have them explain you options, including pain management if that's the route you want to go. I will keep you in my prayers.
I'm only 33 years old. I have an 11 year old and an 8 year old that I want to see grow up. It's time for me to take charge and see a doctor who can actually help me, rather than downplay the pain I'm in.
I am sure that my kidney is the cause of my hospital stay last week, though the doctor didn't even seem to look into it. Ileus, blood in urine, ketones, protein, electrolyte imbalace as well as a high white blood count all connects to kidney trouble. Unfortunately, I was the only one to connect them all together, and my opinion was ignored because I was just a patient.
Be strong girl. Be smart and be strong.
 
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happygirl74 replied to reneelynn78's response:
Thanks for responding Reneelynn,

I am going to see a specialist at Duke tomorrow. I hope to god they can help me. Before my diagnosis I had 2 cat scans, utlrasounds of everything, a hida scan, and I saw a GI specialist. It wasnt until I mentioned it to my Primary that she ordered a KUB supine and erect. Go figure, I had to be the one to diagnose myself. I have only had a couple of UTI's since my kidney dropped. I work in a High School Cafeteria and I can not physically do the job. By the end of the day I am running home so I can lay down because that is the only thing that relieves the pain. I have also been experiencing extremely bad indigestion. Have you had indigestion? I am wondering if it is linked to the kidney because I didnt have it before all of this happened. It seems like some days I am ok and others I feel horrible. It is depends on where my kidney is at, I guess. I also get nauseas and cant eat sometimes which makes me lose weight and the pain gets worse. I have lost 6 lbs because of this and I am a very petit girl. I can not afford to lose weight.I saw a general urologist where I live and he made me feel like I was over reacting. He literally said, "Your not special because you have a floating kidney. Many people have it." Uggghh! The ignorance of some people. I just want someone to fix me so I can live a normal life again! I hope you get an aswer and some help. You also be strong. And please let me know how your appointment with the specialist goes.
 
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reneelynn78 replied to happygirl74's response:
I also diagnosed myself and pointed it out to a Urologist, after months of grueling internet searches as to what is wrong with nme. And don't believe the doctor, nephroptosis patients are special, after all it does take doctors quite a few trips around the block as well as studying medical books to correctly diagnose us. Nephroptosis is not all that common, at least not symptomatic nephroptosis.
I know what you mean about being petite. I'm 5' 3" and 97lbs. And I know I need to consume more but when my kidney is having bouts and tantrums it's almost impossible to hold anything down.
As far as indigestion, yes, yes, YES. Crazy heartburn and sometimes I will only eat a little and it seems my stomach can't fit even a bowl of soup.
I too can't stand on my feet too long. Fortunately my husband has an amazing job and I'm a stay at home mom. So I don't have to stand for hours on end, unless of course my boys are at each other, and the errands, housecleaning, school stuff. I use to push through it and pray for rest later but that ended up with me in bed crying cause the flank pain was so bad.
I try to stay off my feet as much as I can, I take baths instead of showers, and thank God for my dishwasher so I don't have to stand there.
Anyways it looks like you will see a specialist before I do. I have had 2 Urologists call me back and cancel my appointments saying that "I'm too serious of a case, they don't want to deal with it." or "They aren't at all familiar with Nephroptosis." Now I'm back to square one, and looking for perhaps a Nephrotologist or a knowledgeable Urologist that will see me. I hope I find one soon.
This is no way to live. In constant pain, unable to function normally. I want to be able to play in the backyard with my boys, or take my dogs on a long walk in the country, but that seems unobtainable unless I have a bed strapped to my back.

You know my old Urologist in New Jersey (I live in Oklahoma now), said that if I gain about 15 to 20 lbs, my kidney could stabilize itself back in the right position. I wish I could. It's like everytime I gain a few pounds, my kidney spazes, I'm unable to eat and I lose more than what I gained.

Let me know how your appointment goes.
 
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happygirl74 replied to reneelynn78's response:
Your story sounds very similar to mine. I am only 5 ft and weigh 103. Everytime I start to gain my kidney acts up too. I totally understand how you feel and pray that you get someone to help you.

My appointment whent better than I anticipated. I saw a Urology surgical specialist at Duke Medical Center today. He took one look at my IVP and said that my right ureter kinks when I am erect. He believes that all my symptoms are related and was impressed that I had got this diagnosis as quickly as I did ( thanks to myself). He also said, it is rare to see symptomatic nephropotosis. So I am special...LOL!! He also mentioned that my left kidney drops but not as significantly as the right and that one day it may need to be fixed. I am so thankful for this doctor! He is going to perform nephropexy on Feb 15. They are going to do it Laproscopically. He said I should be back to myself about 4 weeks after!

My best advice to you is be vigilant, dont give up. Tell your local urologist that you want to be referred to a specialist at a big hospital. Someone who knows what they are doing. My local urologist had never dealt with this before so I told him to refer me to Duke. He wanted to send me to a back specialist. Thank you for chatting with me. It is comforting to know someone out there who is going through the same thing. I hope things look up for you. Be strong and vigilant. Let me know how you are doing and I will do the same.
 
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SteffiM replied to happygirl74's response:
Hi there! My mother just received a similar diagnosis, and of course you know, the pain is pretty significant for her and we want to know more about the Nephroxy surgery. Please let us know how it goes and if you have experienced significant improvement. Her doctor has seen only a couple other cases of this, and she is just taking pain medication and using an inversion table. She huffs and puffs around from the pain, she's tough and stubborn as a mule about her own mobility. It would be great if this can be resolved by this surgery.
Thanks!
 
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ButterflyGirl07 replied to happygirl74's response:
Happygirl74, THANK YOU for posting your info! Can you please tell me who you saw at Duke? I called and made an appointment there (earliest available was 7/2) but I would really love to see someone who won't think I'm crazy!! I'm a 42-year-old female and had a CT scan two weeks ago which showed a(nother) 7 cm (baseball-size) left upper pole kidney cyst and the report also said my right kidney was "slightly ptotic". The CT was being compared to a Urogram I had last March (both while lying flat), so I think Nephroptosis is definitely what's been causing so many of the symptoms I have been experiencing. I have been struggling to get someone to help me confirm the diagnosis because no one seems familiar with the condition. I went to the ER last week because my left flank pain increased and I started having severe pain in my right groin area and my abdomen was so distended I couldn't bend my torso. I also have periodic shooting pains in my lower back which makes it difficult to walk (and sit, stand, or lay down). I also explained that I periodically have numbness in my feet and hands and my legs feel "heavy". The ER Doctor only listened to my chest, back and stomach with his stethoscope (yet noted he performed a complete exam) and called my Primary who assured him nothing was wrong with me (my Nephrologist ordered the CT and neither he nor my primary hadn't even reviewed it). My blood pressure was 143/95 at the ER (I don't usually have high BP & don't take medicine) but no one mentioned it or attempted to lower it. I explained that my BP has been all over the place and I have intermittent low-grade fevers with sweating, night sweats, urinary frequency, and urine tests constantly show proteinuria and hematuria and often WBC. I constantly feel nauseous, especially after eating or drinking anything and have constant indigestion (I was told in February it was GERD, but that was ruled out this week). I have a history of migraines and started experiencing more frequently last year as well as sporadic blurry central vision (I was told this was normal and due to aging...even though I don't have it all the time?) My diagnosis at the ER was "Limb Pain" and Paresthesias in my legs and I was told to take Lortab for pain...even though I explained I was there because of abdominal, flank, and back pain and explained about my CT results. Hard to believe, but I called my Primary and Nephrologist before going to the ER and my Nephrologist told me he didn't think my kidneys are the problem, he said since the CT showed "significant facet arthropathy", the problem is my back! I had an 8 cm left upper pole cyst drained in May of last year and can't get anyone to understand that "no, that cyst hasn't decreased in size because that one was completely drained....that is a NEW cyst". Doctors keep telling me I have arthitis and/or depression and anxiety and they all want to prescribe anti-depressants and pain medication. I was so desperate to find someone who knew what I was talking about that I tried going to my sister's Doctor's office last week and the PA told me I shouldn't be looking for information on the internet and insinuated I am a hypochondriac....excuse me, a depressed and anxious hypochondriac! LOL. That's when I knew that in order to have any hope of getting help, I'd have to find a Doctor who is familiar with Nephroptosis and found this discussion. You DEFINITELY have to be your own healthcare advocate and never give up! Your post gives me hope of finally finding some help and I appreciate knowing I'm not alone!! I really hope you're feeling better and thanks again!!


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