Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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norma67 01/21/2015

I am getting very sick and tired of all this surgery!! This one will just be an overnight deal, but just the same, being put to sleep again to repair an inguinal hernia in my groin! My entire abdomen is encased with mesh but they didn't put it down far enough and another hernia slipped out! I began having excruciating pain down the top of my leg, screaming in pain, so I had to call my local butcher and sure enough that little bugger got out! He has told me that PKD patient are much more prone to hernias! No kidding, this is about the 7th surgery I have had to have! I don't think that includes the brain surgery to clip all the aneurysms either! My belly looks like a crossword puzzle!! I wonder if all the mesh will hold my mammoth kidneys that continue to grow in this old woman's body!! I will have to ask him about that. So next Thursday or something like that, off I go to LaLa land again! Hope you all are doing ok, Helen, are you ok? Has anyone heard from her? Lots of love, Norma ...

norma67 02/05/2015

More bad news!! I have a hematoria or however you spell it and it hurts like crazy! It's from the surgery and I am x7 days post op. I don't know what to do anymore, I think it's time for me to kick the bucket! I can't take more pain and the whole thing is swelled up so bad that can't even put on my underwear. Will see the surgeon tomorrow, pray for me because I will not go through anymore surgery. Life has gotten too unbearable for me, I am too old!, go ahead and give it to me good Helen, maybe I need that! God bless you all. Love, Norma ..

KelleyPaterson 02/06/2015

So sorry to hear you had a complication from your surgery. I don't blame you for not wanting more. Give them hell for not getting you enough pain relief. They have good enough drugs that you should not have to suffer! It's ridiculous! I hate surgery too. Have had 3 failed fistula surgeries this year. I have a central line now but am waiting to be phoned for another surgery. They are going to open the back of my arm from elbow to shoulder to remove a large vein. This vein will be placed in the front of my arm to be used as a dialysis access. It is called a one step basilic transposition. I expect it will hurt like hell. But is safer than a central line which is prone to infection.

I truely wish none of us ever had to deal with pain.

deleted_user 02/07/2015

waiting for me to blast you Norma, sorry but you will be disappointed. I will say this pain will end and I wish you had better healthcare in your area.
as for ending it, I look outside and still see snow, tho we had no real hit here in Jackson NJ. but I am typing with no light on and that gives me hope that spring will come. January was probably the worst month of my life but its over. I am even thinking about planting for spring.
you have immediate problems that need to be addressed and I know you have enough fight left to let your med team have it. once that's done every day will be brighter earlier and darker later. this will happen if you are here or not, why not hang out and enjoy it.

CHeatherS 02/07/2015

Oh dear, waiting to hear how this recent issue has turned out.... surely you have seen the doctor since you wrote last. Sigh, I know, I know. It is so easy for the doctor to just brush off the giant kidneys, as long as they are functioning. Well, the thing is, the squash everything else in the abdomen, which just doesn't really work as well, such as lungs trying to breath, intestines trying to move things around... painful!

I really can't go out of the area Norma, for my surgery. This is the largest city in Alaska, and I would have to go down to the lower 48, which, if I did, I would go down to the transplant center, which really makes life difficult being so far away, and so out of contact.

I sure hope that you will come back with some good news.

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