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I Have Polycystic Kidney Disease

Personal Stories, Advice, and Support 71 People

    Is Kidney Failure In Your Future Polycystic Kidney Disease?

    I Find This Checker to estimate Your Current Polycystic Kidney Disease Futhure. After 9 questions, it estimates the risk to develop Kidney Failure and provides some guidance for you. May it help you! http://www.kidneyabc.com/PKDquestionnaire.html
    winnewu winnewu 41-45, F 1 Response Oct 1, 2012

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    It Has Taken Over My Life...

    I was diagnosed with PKD when I was 17 years old. I had visited doctors before, because I had terrible back pains. However, they all said the same things: I was a dancer, I had just started menstruating, nothing to worry about; it happens in teen girls. Until I fell ill with...
    MerellD MerellD 22-25, F 3 Responses Apr 28, 2012

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    Do You Love Your Kidneys?

    At first, I didn’t. They were a source of pain and some embarrassment. They got in the way of my male “macho” self-image. They were the points of my vulnerability. I hated them, and always referred to them as “my damn kidneys.” This was so for over 40 years...
    RichP48 RichP48 61-65, M 2 Responses May 14, 2012

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    I have polycystic kidney disease.

    The largest cyst measures 6cm in right and 5cm in left kidney. the latest scan report says that 'corticomedullary differentiation lost in with paper thinning of cortex'. Is it a serious problem? I am taking medicines to control BP only.
    aneetasree aneetasree 31-35, F Aug 22

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    PKD Issues

    Hello , My story starts with the death of my father when I was 2. PKD. related. My family also lost my aunt and grandmother , also PKD related. When I was 12 I was diagnosed with PKD. I had a fantastic childhood and youth and did not develop any issues until I was approx 28...
    beachtracks beachtracks 41-45, M 1 Response Jul 24, 2013

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    polycystic kidney disease runs through my dads

    side of the family. I was diagnosed 4 months ago when my menstrual cycle was not right I had a ultra sound and they found cysts not only on my kidneys but on my ovaries as well. the ones on my ovaries were 6cm, 5.4cm, 7cm.
    chlo3ann3 chlo3ann3 13-15, F Oct 4

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    What A Life..

    My name is Kayla, I have pkd, it has effected my life alot, when i was three years old, i got very sick, my mom was worryed, they took me to the er, they couldnt help, i was n pain and very dehydrated. They sent me to kansas city, by alumblance. There they found out my sickness...
    kaylaewen kaylaewen 18-21 2 Responses Jan 13, 2012

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    Military Status With Pkd

    I was diagnosed with ADPKD in 2010 and have been in the military for over 12 years. I am currently living overseas and concerned about my future options. It all started with a few ER visits because of serious abdominal and back pains. It took about one year before I realized I...
    Forward4ME Forward4ME 31-35, M 6 Responses Aug 25, 2012

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    Just Diagnosed

    Confirmed diagnose yesterday that I am likely to have PKD even though no symptom yet. I didn't know much about the decease until now and looking up information on the website horrifies me. Now I know how I will live my life in 10-15 years. I don't regret knowing it because it...
    danelionspromise danelionspromise 26-30, F 5 Responses Feb 24, 2011

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    Diagnosed 2 Yearz Ago

    I was diagnosed with PKD in Feb 2010. I am a 60 year old woman with no family history of PKD. I also have multiple cysts on my liver. I had many kidney infections as a teen and kidney stones twice in my 30's but have been in good health otherwise. I went to the dr because of...
    chezlinda77 chezlinda77 56-60 2 Responses Feb 25, 2012

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    6 Year Old Child Diagnosed With Polycystic Kidney Disease

    My son was hospitalized on sunday for abdominal pain. They did a CT scan and found cysts on his kidneys. They diagnosed him with PKD based on the fact that my husband, all of his brothers, all of their cousins, my husband's mother, and his cousin's father have the disease. As I...
    sweetzebragirl sweetzebragirl 26-30, F 5 Responses Feb 14, 2011

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    A Green Light

    Have you ever heard of micro-Chinese medicine osmotherapy whixh shrinks the cysts and reduces the surface of your enlarged kidneys???? http://www.youtube.com/watch?v=JETVKmnkx8M Share any information you have about it , please...
    olgerta olgerta 22-25, F Aug 27, 2013

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    Growing Up I Had That Sinking Feeling

    In the back of my mind I always knew that my body would someday betray me. It was just a feeling. I was right. I remember it as if it were yesterday. My husband is an army surgeon and we were living in Ft. Campbell, KY visiting family back in Wisconsin. It was a hot sunny...
    KyCat KyCat 56-60 1 Response Jul 11, 2013

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    Polycystic Kidney Disease

    Recently during an MRI, it was found that I have multiple growths throughout my kidneys, liver, area, one which is massive on the kidney. The doctor sent the MRI disc off to a doctor who specializes in this disease who diagnosed me with polycystic kidney disease.. I hurt a...
    fancythecat fancythecat 51-55, F 8 Responses May 8, 2010

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    What Causes Polycystic Kidney Disease

    What Causes Polycystic Kidney Disease Polycystic Kidney Disease passes on from generation to generation. Many factors can trigger Polycystic Kidney Disease, but gene problem is the dominant cause for various cysts in kidneys.
    kidneycares kidneycares 22-25, M 2 Responses Oct 5, 2012

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    I was diagnosed 2 weeks

    before my 18th birthday through an ultrasound taken after contracting a very nasty kidney infection. At my age I have no real noticeable changes, just slightly higher blood pressure and recurring urinary tract infections. I know it probably sounds very silly of me to be worrying...
    theinevitablechange theinevitablechange 18-21, F Oct 11

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    I Will Never Eat Chocolate Any More

    Chocolate is regarded to stimulate the enlargement of renal cysts. Caffeine increases the quantity of the messenger protein cyclic AMP. This can trigger cyst fluids to secrete, thus to enlarge all renal cysts, causing more damages to kidneys. Cyclic AMP can increase the renal...
    winnewu winnewu 41-45, F May 7, 2012

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    ..er... Well It's A Long One. So Much So That I Have Written A Book

    if you google tell me if this hurts than add lulu then the first find should have my page first 11 pages available- mostly comments from those who have read it mick
    fenal fenal 56-60, M Jan 19, 2013

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    Kidney Disease Can Destroy The Things You Love To Do

    Kidney Disease can destroy the things you love to do, but it doesn't have to. PKD can mean more than just pain and pot belly. As you know, PKD means pain. But you may not know it can also mean destruction — not just of your kidneys, but of the things you love to do. The longer...
    winnewu winnewu 41-45, F May 8, 2012

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    I Wish They Understood What My Insides Feel Like

    my kidneys stretch from my ribs to my hips. my liver from the right side of my abdomen to the left. i have constance pian inbetween my shoulder blades in my sternum and the left side of my abdomen. the pain level is always a 5 and then without warning it goes off the richter...
    februar februar 46-50 1 Response Mar 1, 2013

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    15-months Pregnant

    In April of 2001, I was diagnosed with Polycystic Kidney Disease. During a routine physical, my very thorough doctor felt something odd around the abdomen. Concerned about uterine cysts, fairly common and usually benign, she sent me for an ultrasound. Sure enough, I did indeed...
    Jonesman Jonesman 36-40, F 10 Responses Sep 8, 2008

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    Do Any Other PKD People Exercise While Wearing A Heart Rate Monitor

    Does anyone, with PKD, exercise with a heart rate monitor? Hi have had five different heart rate monitors over the last 10 years and they all show my heart rate going up to 212 and as low as 25. Has anyone else experienced this? I have no symptoms of dizziness or heart...
    binab binab 56-60, F 1 Response Sep 17, 2013

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    How Live Well With Pkd

    Once I hear that “PKD looks good on you”, it really make me appreciated about it. Here are the share suggestions about how to live well with PKD. 1. If you live in a PKD family, an appropriate diet management is suggested, especially for the one who is with the disease...
    winnewu winnewu 41-45, F 1 Response May 3, 2012

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    Life With Pkd1

    I am currently 28years old. I was diagnosed by ultrasound when i was 17 due to a bad UTI. I have not had one since thank goodness and have not had a lot of issues yet. My father had PKD1 as well and just passed away in January this year due to heart complications stemming from...
    smvanam smvanam 26-30 2 Responses Apr 3, 2012

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    Teal Ink

    I am 24 years old and throught my entire life thet imebombs i was born with have told me you cant do this and you cant do that. I abused alcohol for a long time trying to deal with it. I am pretty alone with this disease as i am the only person with in a large radius that has it...
    akoerbel1988 akoerbel1988 22-25, M 1 Response Apr 10, 2013

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    Related Experiences

    Hello. I'd like to share my story and see if anyone has anything similar. A few months ago I've had this dull pain in my left abdomen and I decided to go to the doctor and get some...
    matt3368 matt3368 26-30, M 1 Response Oct 14

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    I'm so over it! Getting constant cramps every day and sometimes it hurts so much I have to sit down and nearly cry. Tried going on the pill and it made the pain worse. I hardly...
    wannaplay122 wannaplay122 18-21, F 2 Responses Oct 9

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    I was diagnosed at 14 with PCOS and when the nurse told me, I just broke down and cried.. I semi expected to get it but I didn't want my fears to be true, my mum had it and a...
    BennetWitch BennetWitch 18-21, F 1 Response Oct 11

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    I haven't had a period in 14 months and it hurts so bad :(
    XxForeverBlueXx XxForeverBlueXx 18-21, F 5 days ago

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    I was diagnosed with Crohn's in June of 2014. I am having one of those days where I feel like the disease is leading me around by the nose. I try to keep my optimism but I...
    craftymom24 craftymom24 41-45, F Oct 12

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    I go through phases with Parkinson's disease. At times I feel lucky that I have this and not something that will outright kill me. Then there are other times, like now, where I...
    LifeinWoodinville LifeinWoodinville 41-45, M 5 days ago

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    I have this too. I was not diagnosed with it until 2014 but have been experiencing these symptoms since October 2008. The doctors all told me it was eczema. I have used every over...
    Rosalindjts Rosalindjts 26-30, F Oct 7

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    I was 14 when I found out that not only i have a cyst on my ovaries which was bigger than my actual ovary, I also was diagnosed with polycystic kidney disease.
    chlo3ann3 chlo3ann3 13-15, F 1 Response Oct 4

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    I have always been attracted to the extremes. Which, I guess, also helped determine my choice of dog. My pet Chihuahua died prematurely of a rare kidney disease when he was 4. I...
    blondevanillaspice blondevanillaspice 13-15, F 1 Response Oct 5

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    I was diagnosed with mild carpal tunnel 5 years ago. I've been able to cope fairly well with braces and pain medicines up until the last few months. I changed departments and I'm...
    sewingmojo sewingmojo 41-45, F 6 days ago

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    Hey ! I have had this disease since I was 9 years old. I am 22 now. I was sick for a large amount of my childhood. I been in remission for 7 years. I have been experiencing this...
    evermoreme evermoreme 22-25, F 1 day ago

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    I was diagnosed at the age of 11. It is now just a few months shy of 10 years. Been a long and bumpy 10 years filled with medications, both crazy and fantastic doctors, days of...
    happyinmyskin happyinmyskin 18-21, F Sep 24

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    I have sickle cell disease and it is very annoying
    Alisha4690 Alisha4690 13-15, F 2 Responses Oct 13

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    I am a 44 yr old male who passed my first kidney stone when I was 12 and I was diagnosed with Medullary Sponge Kidney in 2004 when I had to give up my job as an X-Ray Tech because...
    stoner2 stoner2 41-45, M Sep 23

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    my name is nathan and i learned about this site from a parent at a children's hospital support group. i have a very sick son. i am going to give a little background info to give...
    singledaddy101 singledaddy101 31-35, M 1 Response Sep 29

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    HI EPers! I have Medullary Sponge Kidney and am looking for any others with the disease! I would love to have an interactive MSK network here on EP. Feel free to join the...
    Cocofemme Cocofemme 26-30, F Oct 14

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    Up late can't sleep... Hurts to stand up move my arms lay down. I hate this disease. Tired of trying to be strong... Feeling alone... Tired of explaining what people who don't...
    MsAnonymous1 MsAnonymous1 18-21, F 16 mins ago

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    Hello. I'd like to share my story and see if anyone has anything similar. A few months ago I've had this dull pain in my left abdomen and I decided to go to the doctor and get some...
    matt3368 matt3368 26-30, M Oct 14

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    i want to sale my kidney my blood group is b+ my mobile no. is 9210173892
    sonuverma666 sonuverma666 26-30 1 Response Oct 5

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    Kidney stones... Kidney stones everywhere!
    KayvonJr KayvonJr 13-15, M 1 Response Oct 11

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    hi friends my name is rohith my age is 21 and my blood group is o+ i want to sale my one kidney argent plz help me this is my contact no 9032189222
    rohithkumar2223 rohithkumar2223 18-21, M 2 Responses Oct 12

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    i need urgent money that's why i wanna sell my own one kidney. who need urgent contact with me. i am from bangladesh. mobile +8801722985592
    imran900 imran900 22-25, M 2 Responses 6 days ago

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    I want to sell my kidney or another part. Blood group A +. Age : 36. Mob : 008801867112166. Mail : mannanctg0811@gmail.com.
    ctg0811 ctg0811 36-40 1 Response 4 days ago

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    I want to sell my kidney or another part. Blood group A +. Age : 36. Mob : 008801867112166. Mail : mannanctg0811@gmail.com.
    ctg0811 ctg0811 36-40 1 day ago

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    I'm 28 and have been suffering from the age of 13 have been in and out of hospital for 12 years with what they said was abdominal migraines! Surprise surprise 3 years and after a...
    staceygall28 staceygall28 26-30, F 6 days ago