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I Have Polycystic Kidney Disease

Personal Stories, Advice, and Support 73 People

    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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    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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    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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    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, 2014

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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, 2014

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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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    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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    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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    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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    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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    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, 2014

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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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    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 3 Responses May 14, 2012

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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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    I have known since 22

    that I have this disease. High BP has been my only symptom. Now I feel as though my torso is crowded. Breathing can be difficult especially after eating. Anyone else with this problem?
    panoon12 panoon12 31-35, F Feb 24

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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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    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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    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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    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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    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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    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 26-30, M 1 Response Apr 10, 2013

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    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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    ..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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    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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    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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    Related Experiences

    March 21, 2015 The dream I had last night was far too accurate a metaphor for my life than I'm comfortable dealing with. It was long and drawn out, with many different twists and...
    ncbarr ncbarr 31-35, F 5 days ago

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    Please help if you can i know you all are struggling aswell (https://www.youcaring.com/medical-fundraiser/help-rachel-with-debt-from-late-stage-lyme-disease/328355#.VRUAZkKYLak...
    rabradley rabradley 22-25, F 5 hrs ago

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    Today started with a visit from the neurologist. He asked how I was feeling and what I was able to accomplish. He had obviously already read what the nurses wrote though, since...
    ncbarr ncbarr 31-35, F 1 Response Mar 5

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    its with me daily has been since I was born - I am different because of it - no one can see it or notice it- its my invisible disease. I look healthy active happy and generally...
    blonde10 blonde10 36-40, F 2 Responses Feb 28

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    March 9, 2015 The next person that tells me to be positive is going to get punched in the throat. Don't tell me how to deal with this if you've never been through it. I'm being...
    ncbarr ncbarr 31-35, F Mar 11

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    I was diagnosed with Crohn's when I was 10 (In 2001), and now I'm 23. (I'll be 24 in June) It's weird knowing you've had disease for over half your life and will continue to have...
    Catherdra Catherdra 22-25, F 4 days ago

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    It's hard to get used to having to choose between all the little things you do in a day that you take for granted. This morning I walked to the shower (behind the wheelchair) and...
    ncbarr ncbarr 31-35, F Mar 8

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    I got diagnosed in 2012 when I lost all feeling in my legs. They did not catch it in time for it to be cured, they tried but failed. I was luckily already seeing a doctor who also...
    briannanicolex briannanicolex 18-21, F 1 Response Mar 13

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    March 16, 2015 Today was my fourth day home. I had told myself and my family that I wanted three days to sleep and relax and just recover, and then I'd start working on getting...
    ncbarr ncbarr 31-35, F Mar 16

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    Chrohn's is the worst!! These have been the roughest 2 years of my life so far. Words can not explain my frustration with this. All I want to know is what the hell can I eat...
    beYOUtifulxo beYOUtifulxo 26-30, F 5 Responses Feb 27

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    Do my eyes droop? Yes and no. Lately I haven't like many pictures of myself because I didn't think I looked very alive. Every now and again when I had my concrete leg days I'd take...
    ncbarr ncbarr 31-35, F 1 Response Mar 7

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    I have bruises and needle marks all over my body. Everyday for 24 days I've had an injection in my stomach of blood thinners, I've had numerous blood tests, sometimes twice a day...
    ncbarr ncbarr 31-35, F Mar 8

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    But it's Friday! And anything can happen, lol
    TexasRocker TexasRocker 46-50, M Mar 6

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    I have polycystic ovary syndrome. It mean my ovaries produce little and irregular eggs. This also means I miscarry, a lot. I’ve lost 7 babies and I am 21. You want to know why I...
    dakota4oneday dakota4oneday 18-21, F 5 Responses 5 days ago

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    okay so I was with this guy for 3 years ; he was always cheating on me but he was cheating on me for the last year with the same girl. and then he cheated on her with a different...
    xoxokatesue xoxokatesue 18-21, F 1 Response Mar 13

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    This is something that I have been considering for some time now. Before I go into my story, I will tell you a bit about me. I am a divorced, mother of three beautiful children...
    youchampion youchampion 36-40, F 13 hrs ago

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    Hi my name is rajan 20 years old from India (Ludhiana ) I want sell my kidney bcoz I need money very urgent if any person required kidney so plz contact me +919914088879.
    Rajan01 Rajan01 18-21 1 Response Mar 8

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    Hi my name is Amol 31 years old from India (Thne ) I want sell my kidney bcoz I need money very urgent if any person required kidney so plz contact me +919137703048
    amol2015 amol2015 31-35, M Mar 15

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