It never seems to be quiet for you. i wish we could be there to wrap our arms around you and give you love and strength. Take care of yourself. Don't get run down because he is probably going to need some tender care for a little while.

That is scary about his creatinine. Please keep us posted when you get a chance. I am hopeful they will keep him comfortable until he gets the little pieces out.

Sending you love and hugs.

Oh my gosh Norma!!!!!! I can't even imagine the pain he must be in!!!! How far away from you is he? Yes, like Heidi, I also am thinking cyberhugs...... and lots of hugs and prayers.

Blessings dear, keep us posted!!!!!

Heidi, I don't even know who you are let alone for you to make a statement that I always have something going on! I have only seen your comments in the past few months at best, even though you seem to have been a member since 09. Where have you been? I haven't seen you except for you recent transplant when you needed people to help you in your life. Good for you.

consequently, this is what happens when you have a family filled with PKD. think twice about having children and giving them your disease!! My journey has just begun with my children as I have PKD type II that gets you when you are old. My son that has the kidney stones, and he's only one of them with issues from PKD, is only 42 years old and his kidney function is going down from the result of having such vast amounts of kidney stones. I am going down the drain as well, all my children have problems associated with PKD type II. Is it worth it, living your life in a somewhat normal fashion and then boom, at an old age, you are hit with the this. I don't think so. I am pissed as you can probably tell, so please don't tell me that I always have something going on, because I do and it's a direct result of PKD. At least when you have it when you are young, you have the option of a kidney transplant, that is not true when you are old, believe me, the last thing on the face of this earth that I want, is to have to tolerate the complications of a transplant!! You are the lucky one, not me or my children. Please think twice about your comments. Yes, I am angry and I have every reason to be angry. My son has had an invasive procedure done to him that in all probability won't do a thing for him, because the inadequate radiologist read the CT scan wrong and the kidney stones that he said existed, indeed did not. They are all in the kidney and there is no way they can get them out, according to them, the stupid doctor's that live here in the armpit of NYS! Once again, we will be leaving the area and going to NYC for proper treatment.

I'am sorry for being so angry, but you have made me angry "accusing me of always having something going on." You are the lucky ones to have PKD when you are young, you have a chance at a new life, we do not!!!

I thought I had a family of friends on Daily Strength, but quite obviously i do not. Just another dream world of mine. I will not be posting again and am leaving this rediculous place with people posting paragraphs after paragraphs of nonsence that literally no one understands expect the poster. Do not bother writing to me again as I am withdrawing my membership on DS! It has begun to cause me nothing but grief!

I wish you all the best my DS friends that have been with me since the beginning.

Norma...

I know you asked me to not reply but it would make more sense for me to delete from this sight. You have been very helpful and encouraged many on this sight.

I honestly didn't mean any harm. I just remember you had gone through a lot with Jim and just having this disease alone is tough.

I apologize for offending you, I honestly meant nothing but empathy and love.

Thanks to all of you.

Signing off
Heidi

Norma:Is there a chance that the rise in the creatinine be a temporary thing? Not going by any medical knowledge, but common sense, if a stone is causing a blockage, urine excration could be impaired, which could create a creatinine build up in the blood? I guess a blockage could also create an infection, which could cause inflamations and not allow the kidneys to filter properly? I don't know but maybe this could be temporary? Or am I way off again?
I hope it is, either way, your son will be in my prayers.
PKDAD

Hi Norma:

It sounds like your son had a similar situation to mine with kidney stones. I had a stone blocking the ureter so they put in a stint. They scheduled lithotripsy, but the x-ray before the procedure showed there was no stone. Apparently the stint also helps the stone(s) to pass out of the ureter. The urologist said I must have passed the stone, but I am pretty sure I didn't. I am under the opinion (because I have no other natural explanation) that the stone dissolved in my bladder. Either that or God beamed it up to the Enterprise. I also have a few other small stones in my kidneys that don't ever seem to move (so fortunately they don't bother me either). I hope and pray that all goes well for your son.

Ward

Norma,
I'm so sorry to hear about Jimmy. I sure hope you've heard some good news by now about the lithotripsy and the stones are are breaking up into tiny little pieces and passing out of his body now! I simply can't imagine the pain he is/was in!

I suspect the dramatic rise in the serum creatinine is due to the backup in urine in the kidney (and while the kidneys still filter the blood, there's really nowhere for the by products to go as the down pipe is overflowing) due to the blockage. It will probably go right back down to normal when the stones are removed, the urine is all eliminated and his kidneys get a chance to relax, get plenty of fluids and recharge themselves. It's just going to take time to get his system to recover from the onslaught (and once he can pee again, lots of fluids).

Please let us know how he's doing. As always, you're in our prayers, and so is Jimmy. Lots of hugs and love,
Ruth

PS Ward, with PKD, if you're already a stone producer, it's not uncommon to have stones stuck in your kidney, to include the remnant of a stone that was zapped during lithotripsy, in and among your cysts and in places where they can no longer (and thus they don't cause pain, just show up on imaging studies as stones, stuck in place...). On the other hand they could be calcifications from past cyst ruptures. Stones can pass without you even knowing it (especially if the you went through lithotripsy and the stone broke up into teeny pieces that were too small for the strainer to pick up).

Norma,
Without wishing to offend, I'm making the assumption that you're totally freaked by your son's pain and suffering. That's the only conclusion I can come to re your response to Heidi's sympathetic statement that it never seems to be quiet for you. Lot's of us have come to this site because we were in crisis and needed information. We come and go as our lives change, sometimes for better, sometimes for worse.
I'm with everyone else, I bet once the problem is solved, his creatinine will come back down.
Lisa H

Hi Norma,

I just want to send out prayers to you and your son. I also had a stent put in after my cancer surgery and they are very painful so please tell your son to take it easy. I found it very helpful to be reclined and truly not move (it was the only way I was somewhat pain free) Again all the best to both of you.

Nicki