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Frustrated - 3 Kidneys (Page 1)

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Wondering if anyone out there can relate. Just here to share my story and vent. About 1 yr ago I was diagnosed w/ a bicornate uterus - apparently anomalys of the uterus are associated w/ anomalys of the renal system (who knew?) - so I was sent in for an IVP. During the exam - I was shuttled in for a CT ...I was mortified when it seemed like the entire hospital staff came in for a "peek" at what the monitors showed. The Dx is that I have 3 kidneys (Supernumerary kidneys) - apparently the most rare of renal anomalies. Left is "normal" (30% function - no explanation) Right side has two kidneys, one is partial and they are fused. (function 35%) Right side has suffered hydro., is dialated and there are two ureters that fuse to before the bladder (wishbone effect) - also severly dialted. I have history of UTI, bladder and kidney infection. Angry that with my past - this was never discovered before. This condition puts me at high risk for infection, stones and CKD. I was put on a low sodium / "easy to digest" protein diet to maintain kidney health. Urine regularly shows trace protein and blood but doc. says 24 hr. collection isn't necessary. Creat. & BUN are normal/high - Dr. says my condition may "skew" results but "believes" this is fine. After inital shock and life changes - I have come to accept this is the way I am as optimistically as I can. This week has been tough - I'm battling another kidney infection (4th since diagnosis). Flank pain and exhausted. I want to see a nephrologist but my urologist strongly discourages it. What is his deal? I wonder if my condition clouds his judgement or if he really doesn't know what to do with me. I am tired of the antibiotics, tired of the fear and tired of the unanswered questions. Its hard to be optimistic when you don't feel good and I just really needed a place to "let it out." Thanks for listening.
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First Helper tmorela1
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replied June 29th, 2007
Extremely eHealthy
I can completely understand why you are frustrated. It seems like one to many doctors are telling you that they just don't know. Which can be very discouraging when they are suppose to be educating us about our problems, not the other way around.

I have no experience with this diagnoses, so I'm afraid that I can not be of much help. But, I hope that someone will be able to offer you some advice. Have they discussed the possibility of surgically removing the third kidney or, because they are fused, would it be to risky.

Even with these issues, you can still become pregnant. Have you seen a reproductive endocrinologist?

Sorry that I couldn't be of more help. But, we are always here to listen!
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replied June 29th, 2007
Active User, very eHealthy
I can sort of relate to the 'frustration part'. I don't have 3 kidneys, but I did have an obstruction that caused alot of flank pain. They did surgery but I ended up losing function in that kidney. I am now in your position where they want to just wait and see. I have been to a urologist and they don't want to do any more. They won't refer me to a nephrologist either. I also have Diabetes 2. As long as the creatinine is within normal levels they won't do anything. I deal with the fatigue and pain too. Go ahead and vent. I hear you!!
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replied July 1st, 2007
Thank you so much for the support. Today is a better day but it means a lot to have somewhere to go when you get overwhelmed by it all. I try to put on a brave face for my friends, family, the world and even that gets exhausting at times. Thank you - thank you - thank you for allowing me to be less than strong for a moment. To answer your ?'s -

MC- You should know I have 2 amazing children (ages 5&9) Very Happy and I've never had trouble getting PG. My issue has always been with carrying to term Sad . Last yr. after another PG disappointment drs. investigated to find the bicornate uterus - they said my children were true miracle stories. In any case - the DX is what led them to research my kidneys. I guess there is a part of us that grows in utero thats called the mullerian ducts. They create the kidneys, ureters and the female uterus. If something goes wrong with the mullerian ducts during develpment - it is likely you will have a birth defects in all of the areas. I guess I'm living proof - Confused

Re: surgery Believe me, as scary as it sounds a nephrectomy is an option in my book if it improves my quality of life. The fusion of the 2 does not make it anymore risky as far as I know - I believe the concern is - the "main" kidney on that side is severly damaged...I think the concern is how it would function alone if at all. My left side (the good side) is already only at 30%. I don't know which is the lesser of 2 evils and I think the docs. are playing the same guessing game - the 3rd kidney is the source of a lot of trouble - but without it...who knows?

Aflsh - It sounds like you were in similar circumstances re: surgery. Did they discover what was blocking the kidney? Did they discover what caused it to lose function post surgery? Do you know what the function is on your other side?

Wishing you both well...
Thank you - thank you - thank you again!!!!
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replied July 4th, 2007
Active User, very eHealthy
Your welcome anytime. I can relate to how frustrating it can be. I too, have good days and bad. I have had several cystoscopies and it never shows anything. The same as you, my creatinine is within limits so they don't do anything. I was born with this defect, apparently, it was a kink in the ureter at the junction of the kidney. I don't know why they won't remove it when it doesn't function. Now it has at least 3 big cysts on it. I get tired as well. My other kidney always appears normal in every test. I hope everything works out for you. Keep in touch.
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replied August 2nd, 2007
Hi. I was born with 1 kidney. I have an abnormality of the mullerian duct. Am missing my uterus completely, my left kidney, left ovaries, left tubes. Everything. Seems like the opposite of you. Am scared of the day I have any trouble with my kidney because I have no backup. I'm sorry you are going through this. It sounds painful and confusing. Stay strong though. I hope you feel better soon.
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replied October 15th, 2007
javatif:

Please read the question that I just posted about myself today....I can undestand and completely relate...

"I am a 39 yo female with the following urinary tract abnormalities, (per several specialists): Supernumerary fused right kidney, ectopic, lies in the iliac crest and pelvis, with 2 additional renal arteries. Kidney is malrotated -anteriorly, with a single ureter draping over the kidney and then "s" curving, almost a hard 90 degrees before entering the bladder.

My problems began 4 years ago when I went to my MD with what I thought was a pulled lower back muscle on my right side. Not so, he found anomaly and sent me to specialists. In the last 4 years I have had numerous UTI's, persistent flank pain, and passed several stones. MD's are very fascinated by the anomaly but cannot find issue with the kidney. Glad for that! However, one MD relieved pain somewhat. She believed pain was neuropathic pain and I now take a small daily dose of Nortriptyline. It has helped, but....

My question is this...Can the ureter in the position it is in and it's travel to the bladder cause some of my problems such as reflux, obstruction, UTI's, and pain??"

We are a rare few in which the answers are even rarer...
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replied October 18th, 2007
Thank God I just have lots of stones (30-50 inthe last 3 months) but the Dr's don't seem to know what is going on. I'm looking forward to Friday I have been sent to the nephrologist. I can't believe you haven't seen one yet. I think you should do what you have to to see one. What is the worst thing that can happen? He/She could say "I can't do anything" but you might get some answers? Your primary can give you a referal. Remember this is your health and the Dr's work for you if your not getting an answer get a new Dr. Make sure you have copies of all tests that have been done to take with you. Hope this helps.

By the way has any one heard of stones made of Protein and what couses them?
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replied March 27th, 2008
I am pretty sure I know what causes protein stones
BTW Sarahi. I am passing stones out of both kidneys & my gallbladder. Real fun, only your calcium oxcolate stones will show up on any imaging device, protein stones are invisible.
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replied January 7th, 2009
Stones
I have been passing protein stones for 4 years this month, (20% of the stones were calcium oxolate & 80% protein, now its about 99% protein & 1% calcium oxcolate). I am wondering if the lithotripsy I had 5 years earlier had anything to do with my current problem. So far I have passed well over 400 stones, maybe 500, I stopped counting, its a nightmare. I would strip the liscense to practice medicine of 99% of the Drs I have seen. Out of the first 250 stones I passed 85% of them without pain medicine. I am living in a nightmare & most Drs dont even care, which makes me realize how stupid they all are. Bunch of crooks is you ask me. Evil crooks who should burn in hell. But thats beside the point, people should not have to suffer because of bad medicine & incompetant drs. I can show a dr a letter from another dr detailing his encounters with protein stones, as well as showing them the protein stones & after they tell me there is nothing they could do (bc it would require work & they are incompetent boobs)I wonder, so the last Dr i saw who saw the protein stone (that was analyized & confirmed by another dr & the letter of another dr who has some experience with them without having to see mine) I asked, having seen the stones & proof from another dr who know about stones, do you believe protein stones are real. The Dr said "I'm not really sure". Also there is a new machine made by siemens that can detect protein in the body, but it is very expensive & not a very common machine, have been trying to find out the name of it (the radiologist could only describe it to me) still trying to find out what its called. If I knew enough about other people passing these protein stones, I can figure out what causes them & how to fix them (have a few theories), but I dont know anyone who has any ? I guess I am just tired & needed to vent & let you know you are not alone & dont feel bad, you are right the Drs are worse then jerks. Hope you can find an answer. I will try my best to figure this out, I have no life, but passing stones, I need to communicate extensively with a few people who have the same thing b4 I can figure out why this is happening. Keep the faith & hope, dont give up. Peace, Love & Happiness - J
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replied November 22nd, 2009
3 kidneys with UTI symptoms.
I am almost shocked to hear of another person going through what I am. I too, recently did an IVP scan and was shown I have 3 kidneys. This was thought from childhood but has not been checked on since. I've had permanent UTI symptoms that come and go daily for 2 years now. None of my doctors understand why I have the symptoms during times when I don't show positive for infections. I basically won't know when I have a UTI because the symptoms are constant. Sometimes it is worse than others but like tonight for example, my lower back feels tender and inflammed yet my doctor claims I have no infections and that all 3 kidneys are functioning. On the left side that I have 2 kidneys, I also have two tubes connecting to my bladder.

Like you, I am tired of antibiotics, fear, and unanswered questions...
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replied June 4th, 2010
I also found out I have "three" kidneys - one functions at 30% and the other two are fused together and function normally. I was not born this way - my doctor and I think it grew over the last two or so years. I too have suffered from frequent to constant UTIs over the past five years - and like you have symptoms when they say there is no infection. No doctor has been able to tell me why. I had cystocelle repair about 9 weeks ago and had no infections after that. However, I just found out I prolapsed again when I went in for UTI symptoms. I have a UTI and scheduling another surgery. Will it ever end?????
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replied June 13th, 2010
3 kidneys
my daughter was just diagnosed with having 3 kidneys and 3 seperate urinary tracks...WOW...her two left kidneys are fused also. The bottom left kidney is completely not working and has 100's of stones inside the dead kidney. It has also caused the upper left kidney that is working normal, now has become infected and has a blockage..WOW...she is to have surgery to remove that 3rd bad kidney and block off the 3rd urinary track day after tomorrow. I am so worried for her but I will not let her see my fear. I stay strong for her. I will keep you all posted...we serve a big God...
Bettie Jean
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replied July 16th, 2010
third kidney
im 21 years old and almost died of a UTI that spread to my kidneys when I was seven. doctor told my parents then that another two hours without medical attention and i'd of been dead. Now i'm 21, been suffering with UTI's two to three times EVERY month for fourteen years. Yesterday I started with severe flank pain, this time i went to the E.R cause it was so bad i couldnt pick up my two year old to put her in bed. The doctor did a CT for the first time EVER...in 14 years. Turns out i passed a kidney stone. However, fourteen years of pain and NOW they tell me I have a third kidney. Ive been telling people for years I have kidney troubles, took this long to find out why.
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replied July 23rd, 2010
Frustrated-3 kidneys
I am almost 31 years old I have had kidney infections and UTI's for the last 14 years. I have had kidney infections as many times as 10 in a year. The first few years I suffered from the infections I also dealt with an incompetent doctor that didn't pursue the issue any further, instead he sent me on to the ER to get meds and had my follow ups and the infections would be gone.

I was diagnosed with stones 5 years ago. The stone in my left kidney was the size of a baseball and the stone in the right was the size of a golf ball. I had lithrotripsy to break up the left stone and have had nothing but problems ever since. I was told when the stones were diagnosed that I have an "abnormality" of the kidneys but no one would elaborate as to what it was exactly except that it cause severe reflux.

I was hospitalized with an abscess in the left kidney 3 years ago and nearly died. Another procedure was done to break up the stones using a laser during a ureteroscopy. I was, once again, hospitalized last week for an infection, more stones and pyelonephritis. I was also finally told that I have a third kidney (on the left side where I have had continual problems!!)!

I have a follow up appointment with an endourologist on Tuesday and I hope to finally have some more answers!!! I am so glad I found this thread because now I know I am not the only person going through all this!!! I don't understand why the medical community has so many idiots and incompetent people that really don't seem to care about their patients! Don't become a doctor if you don't want to follow your Hippocratic Oath!!
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replied October 11th, 2010
I have 3 kidneys and refluxing megaureter. My Dr. recom surgery.
I have 3 kidneys also - 2 on left and one on right. I had a VCUG done (Voiding Cystourogram) where they inject dye into your bladder and take xrays while you pee on the xray table. I know, its weird. But the test shows whether urine is getting up your ureter or not - if it can go up your ureter toward your kidneys, you have a problem. In my case, my "extra" kidney has it's own "extra" ureter, which was allowing urine back up it (refluxing). Because of this, I have UTI's non-stop, and take antibiotics prophylactically. My doctor plans to do surgery to remove the extra ureter that is broken.
The important thing to remember is always - if you don't feel like you're getting answers from your doctor, get a second opinion! That is always your right as the patient. Even if your insurance won't pay for it, a 2nd opinion usually only costs like $150 at a specialists office.
Also, if you don't have insurance, apply for the federal insurance risk-pool - I use it for my problems because my problems are pre-existing conditions that normal insurance won't cover. It is $350/month, and has saved me thousands of dollars.
I love my urologist, if you live in the Houston area and are having problems I HIGHLY recommend Dr. Dylewski at Northwoods Urology.
good luck!
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replied December 2nd, 2010
What is the name of this condition? Would I be a good donor?
I have three kidneys, three urters, and two uteruses and have AB+ blood. All three kidneys are fully functioning. Only when the two on the left "twist" did I get severe infections (it has been 14 years since my last). So bad were the infections, once I ended up with toximia and almost died. I was in the hospital for about a month. I have had five pregnancies; however, only my first one survived; he was borne at 8 months - near full term. I have had four pregnancies after, but each only made it to four months, I would then spontaneously miscarry. I am now 51 years old, and I did not know until recently that these "oddities" are an actual condition. With all that I have been through, not one medical person ever spoke to me about it.
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replied May 24th, 2011
Three kidneys - symptoms
Down about my three kidneys.
I too have 3 kidneys. I can't believe what I am reading. I was diagnosed about 5 years ago at the age of 42 with this condition. I had six pregnancies and only two children survived. Imagine all that time visiting doctors of all sorts and nobody discovered my kidneys. Endless kidney infections from early childhood and nobody thought to check. Then one day while wondering why I had begun early menopause my friend who is a radiographer discovered my extra kidney while doing an ultrasound on my ovaries. Unreal... I was stunned. I was immediately sent to specialist but she decided it was ok to leave things as they are as all kidneys are functioning perfectly. I have managed to balance my infection with a product called Solidago it is fantastic., a natural product. However I am wondering does anybody else suffer with any of the following symptoms while I believe are also related: Extreme fatigue, bloating, uncomfortable while turning to my right where two kidneys are, migraine, early menopause. I began menopause at 35 any information would cheer me up today as I now need to go to bed by 9pm each night or i am not nice the following day. Also I noticed in an earlier message somebody mentioned a low sodium / protein diet is there a special diet I should be following..
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replied January 11th, 2012
My 13 mth old might have 3 kidneys?
I was recently told my 13 mth old might have 3 kidneys. She had 2 UTI's back to back (within 2 mths) and was sent last week for testing. She doesnt have reflux, but the ultrasound looked funny. My pedi said they "suspect" she has 2 kidneys on the leftside and 1 on the right. I have an appt to see a specialist and just wondering what I should expect if she indeed has the extra kidney. I tried doing searches but there isnt much info I have been able to find. What causes it and how is it usually treated? Will she have to be on antibiotics the rest of her life? The antibiotics are causing such nasty yeast infections.
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replied January 12th, 2012
3 Kidneys
Hi,
Well as my three kidneys were only discovered at 42 I can tell you your baby will have a normal life with possibly no intervention whatsoever. While I was told it was uncommon I have come across so many variations of this kind and very few people have any problems. As a child my only symptoms looking back were a number of kidney infections which were successfully treated with antibiotics maybe three a year at worst however the tiredness was the one I struggled with which made me quite moody. If however I had been aware of my extra kidney I could have done a lot to help these symptoms. A good diet with fresh fruit and veg and as little processed foods as possible. I also got the best help from Jan de Vries who is a Natural Practitioner. You can google him and email him online. He will respond within three days. Give him as much detail as you can when you get it and he will advise on diet and any other products that will help support your baby. My advise is don't worry at all. Best of luck with the tests and hopefully it will all be perfect.
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replied July 5th, 2012
Wow! So many out there with this tripple kidney issue! I learned that I was living withthis issue while I was 4mos pg with my daughter who will be turning 15 aug1st. I suffered chronic uti's all my life and while pg found that the right side was doubled with 2 ureter tubes forming a 'y' before reaching my bladder. As luck would have it, she was lying on the 'y' section causing the upper to reflux into the lower. Due to. My history of uti's and a near fatal kidney infection a few years previous, dx said that there was reason to believe this was not isolated to just babys resting spot, but that there must be some reflux normally. Both sides are fully functional and I have found that the best way for me to stave off the infection is to take cranberry pills(the juice makes me feel barfy) as this regulates the ph of the urine making it a hostile and uncomfy place for that nasty bacteria to grow. This works wonderfully for me and spares me many trips to the dr. I take a 3pill/3xday for 3 days at the first whiff of an oncoming uti, and have not suffered any kidney issues since! If you like cranberry juice flushing your system for about a week works wonders or a glass a day should help to stave them off completely. It has to be strait cranberry though, no cocktail as those are much higher in sugars and seem to cancel out the alkali benifit of the cranberry. By the way I am 35 and have been uti free for 3 years on this regimine. I hope this is useful for some of you tripple kidney folks out there. Much love and best wishes to you all! -E
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