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I Have Polycystic Kidney Disease

Personal Stories, Advice, and Support 70 People

    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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    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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    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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    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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    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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    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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    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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    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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    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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    ..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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    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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    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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    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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    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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    Pkd By: Kelsey Bell About Raquel Rosado

    When I started researching for my anatomy and physiology paper I really wanted to choose a disease that hit home. Instead of choosing from the prepared topics I went a little off track and a little more personal. You don’t understand how much a disease can impact people’s...
    leuqarrosado leuqarrosado 18-21, F 3 Responses May 15, 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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I was diagnosed with PD in 2000.The neurologist said " you have Parkinson's DIsease". I smiled and said thank you and after a while I got up ,shook hands,"thank you " I returned...
    Gordane Gordane 51-55, M 1 Response 8 hrs ago

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    I'm pretty sure I have Lyme Disease... And after reading everyone's experiences, I am almost positive. I pulled a tick off of me about three years ago and developed the signature...
    Efmatthe9 Efmatthe9 22-25, F Sep 13

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    Today was the APDA Parkinson's Walk in Seattle. It was a pretty good turn out. In total the walk raised almost $26,000 for Parkinson's research. Personally I was able to raise...
    LifeinWoodinville LifeinWoodinville 41-45, M 3 Responses a week ago

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    I first developed a rash on both of my arms in 2008. Since then I have seen 9 doctors and the 9th doctor was the first one who could identify the rash. He told me there is no...
    Anstead Anstead 70+, F 6 days ago

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    I had Grover's on my back and chest. Real itchy. My dermatologist prescribed Triamcinopone Acetonide. Expensive and it didn't seem to help much. I had an old bottle of Calamine...
    mrbob8 mrbob8 70+ 6 days ago

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    I have a heart disease known as Tetralogy of Fallot, and I've had since before birth. This is a defect that causes a hole in ones heart, and I had surgery after I was born. This...
    StarShineGirl StarShineGirl 16-17, F 2 Responses Sep 6

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    I have extreme anxiety about my health. Every time I see something off about my skin or have pain anywhere I freak out and think I have a serious disease. I don't know what to do...
    kico4 kico4 13-15, F 3 Responses Aug 27

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    I have this horrible disease and I totally understand the symptoms very well. my question is, and this may sound morbid but how does a person die from this? I'm in great...
    jamieannilyn jamieannilyn 36-40 Sep 9

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    My husband has just been diagnosed with Ocular cicatricial pemphigoid. Hoping to connect with others who also have this rare disease
    jroush jroush 51-55, F 22 hrs ago

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    Want sell my kidney immediately require money urgently ..B positive grp my no. Is 9765122345
    sujay883 sujay883 31-35, M 12 hrs ago

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    My husband is addicted to heroin. Never thought I would say that. He has a chronic disease called Crohns which effects his life in so many ways. He first major surgery almost 5...
    twinmomma12 twinmomma12 36-40, F 1 Response 5 days ago

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    I was diagnosed at age 8 with Sjogren's (I am now 22 years old) I have never talked to another person with the disease but would love to. As you know if you have this as well...
    hollyphoenix92 hollyphoenix92 22-25, F 1 Response Sep 5

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    I started to show symptoms in October 2012. My feet then legs started swelling. After it happened a couple of times I went to the doctor. They did loads of tests and they thought...
    MrsJenksy MrsJenksy 36-40, F Aug 31

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      I received a kidney transplant from my lovely sister 14 years ago bit now it has failed and I am on dialysis which really knocks the stuffing out of me ,I have no energy and...
    simbakins1 simbakins1 61-65, F 1 Response 5 days ago

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    I want selll my kidney for money I have 27 y o+ kjdney
    manoj114 manoj114 26-30 Aug 24

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    I'm 25 years old my blood group was B+ve I want to sell my kidney for family and personal problems of your interest Contact 9916643633 Staying in Bangalore
    Durgaravi Durgaravi 22-25, M Sep 7

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    I've had pain in my lower right side on and off for about a year now. It comes and goes and is in the areas of my kidneys and appendix. It's usually dull and achey but sometimes it...
    ifearsnowmen ifearsnowmen 18-21, M 2 Responses Sep 9

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    My kidney stone journey (first stone and hopefully my last) started around mid August 2014 (17th) and the the early morning hours of the 19th I was quickly taken to Emergency...
    PoeticMute PoeticMute 31-35, M Sep 10

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    About 4 years ago I went to my GP with an annoying pain in my left side. I was sent for an xray which showed small ovarian cysts. I told the GP I didnt think this was the cause of...
    mrsminxster mrsminxster 51-55, F 1 Response Aug 22

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    With Sept being thyroid awareness month, I wanted to share my experience w/ thyroid disease. Within a yr of separating from the Air Force in 2005, I started experiencing strange...
    afdragon afdragon 36-40, F Sep 8

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    I was recently married and working at a full time job at a medical clinic. We were having our yearly wellness exam for our insurance. Not even 2 days later, I received my results...
    Ilovetosing626 Ilovetosing626 26-30, F Aug 22

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    i fell in love with my best friend when i was 17, her name was sarah.we always done everything together, even went to the same art course. she helped me out through some dark times...
    Thebrokengingerbreadman Thebrokengingerbreadman 22-25, M 1 Response Sep 4

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    Laser eye surgery in under a month l have no option but to try this l have a severe case of this disease and have to be taken off all of my steroids due to health risk/problems...
    Tspklondon Tspklondon 26-30, F Sep 6

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    I know what you're going through and I'm so sorry that you are. When I read this group and the postings in it, I cried the entire time because your experiences are eerily close to...
    smgreen1703 smgreen1703 22-25, F Aug 24

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    My mom told me once that her disease made her feel like an octopus. I said what do you mean? She said her arms and legs feel like they are out of control. She wants me to take her...
    WildHydrangeas WildHydrangeas 26-30, F 2 Responses Aug 26

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    I was diagnosed about 3 years ago. Been sick for at least 5 years, probably longer. I have tried many meds and still can't get my disease out of an active state. Not sure what...
    Enaed Enaed 46-50, F Aug 29