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  • Looking for others....

    My name is Marie. I'm a 48 yr old female (obviously lol) and I was diagnosed with PCKD about seven years ago. It was not an easy diagnosis to get. The first urologist called them simple cysts because it was not known we had a family history. That urologist also told me that cysts do not cause pain. He changed his mind when they drained an 8centimeter cyst and the pain went away. I switched doctors and my current urologist took one look at my MRI, turned to me and asked "who else has poly cystic kidney disease in your family?" To make a long story short my maternal grandmother died at 35 of a brain anyurisem <-----cant ever spell that word------> and my Mom had a sister on dialysis from it as well as two of her children and now my Mom as well. My Aunt has since passed away from lung cancer. Here is what I am searching for: Others who can relate to what I am dealing with. Advice, support and understanding.......

    My cysts grow. I've had three drained total. I am in constant pain. My Urologist told me this is a painful disease and boy he wasn't kidding. I take anti-depressants to cope with the emotional toll. I've been on one pain killer or another and once upon a time I got away with only taking them when the pain was very bad. Well, now it's constant. They just diagnosed a bleeding cyst, I have cysts with debri in them and have had blood in the urine. Frequent kidney infections and it's just been a nightmare.

    As if PCKD weren't enough I also have an arrythmia that requires medication, high blood pressure that is difficult to manage, back problems that cause pain, gerd, IBS, gout, chronic migraines, asthma and I have had just about every organ removed that a human can live with out. I used to take motrin for my back pain but because it goes through the kidneys its not an option,

    There are times when I honestly can not see a future that is anything but bleak because of the chronic pain. I am now unemployed, have no insurance, am fighting for state aid for medical and disability. I have a strong faith base and I truly believe my God is real but (and there should not be a but and there is) most days it is all I can do to paint on a "happy," face because this disease ends in kidney failure and needing a transplant. And the pain is relentless. My Mom is now experiencing symptoms, she is almost 70. I was in my early forties.........what does this mean for me?

    I would appreciate hearing from anyone who has advice, wants to share their story....anything. thanks for reading

  • #2
    Hello Mari311,

    Welcome to the forum, which at the moment is new to all the old timers here as well, so please be patient with us as we muddle thru with a partially working/broken board!

    I know how hard it is to post and find yourself waiting for a response when you are in need but fear not, there are some good folks here who are more likely to respond during the week, which is just a day away now.

    You have shared a lot of information and it is a lot to digest, so at the moment, I just want you to know that your post is being read and that support is here, sometimes it may take a little time to receive it and I have found that it comes to you in the most unusual ways sometimes and most assuredly when you least expect it!

    Hang in there!
    Create signature while not logged in, edited through on 08/15/2012 @ 12:53!!!!!


    • #3
      My husband gets really down and it's hard to keep going for both of us. He doesn't want to go 3 times a week and would like to change to 2 times a week. I told him I'd make a deal with him, keep going 3 times per week until the fistula is ready, then if he wants to try 2 days per week, go for it. What else can I do? I'm checking cites for information and there seem to be several that go with the 2 day a week program. They say that if there is residual kidney function that 2 days should help keep that function going. Does anyone know anything about this? I don't blame him for not wanting to sit down for 3 1/2 hours 3 times per week. Help!


      • #4
        hi marie
        i also have pkd, i am 46 yrs old and am now being prepared for diaylisis, Are you attending a renal clinic and seeing a nephologist? if not you really should do, i sooo relate to all your symptoms,
        heres a link to a pkd site with lots of good information and ppl, you are not alone xx
        Last edited by MarieGrant; 02-09-2013, 12:53 PM.