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
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
Comment