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Kidney Cancer and now Nephrotic Diabetes Insipidus

velmasue's picture
velmasue
Posts: 6
Joined: Nov 2008

Hi All,

I had a nephrectomy 2 years ago due to Kidney cancer stage I.

I went to my Dr complaining that I am always thirsty and I wake up every 2 hours in the night to urinate even when I try not to drink past 3:00pm. I thought I had Diabetes, but he called me today with the results of my blood work and a 24 hr urine test, stating my urine was very diluted and he has diagnosed me with Nephrotic Diabetes Insipidus. (not the same as Diabetes)

Basically my kidney is not responding to ADH a hormone created by your Pituatary gland. He says he does not think it is caused by my having only one kidney because blood work showed my kidney function test were all normal. He also stated that sometimes this just happens with no underlying cause. I dont buy it! He is putting me on a homone Desmopressin. I was just wondering if anyone else out there has had this or knows anyone with it? I have been all over the internet and read its not serious and they usualy treat the underlying condition if they know what it is.

If I had 2 kidneys I would not be so worried....

I will ask the Uro1ogist when I go in for my Cat Scan and check up next month but in the mean time, would like to hear from others.

Thanks to all for any feedback.

Velma

bangormom
Posts: 59
Joined: Dec 2008

Hi Velma,

Sorry to hear about your new problem. I had my left kidney removed on sept. 29 of 08, I was am still stage 4. Before my surgery I was doing the same urinating like every 2 hrs to. That stinks I know, it's like you can't get enough sleep. I am starting with the up every 2 hrs. to now. My remaining kidney is functioning well and no sighn of Nephrotic Diabetes yet thank God! Even tho I don't know about this condition I wanted to thank you. I never heard of this and now I can be on the "look-out" for it.

I fully understand your concern with having only one kidney, everything makes you wonder if what you drink or eat is hurting that remaining kidney. This worry thing is disturbing but I know it's just part of living now.

Thanks again.

Maryann

velmasue's picture
velmasue
Posts: 6
Joined: Nov 2008

Thanks Maryann,
Wow I am glad to hear you are doing well with a stage IV, yes thank God for that!
Got a call last week, my insurance (HMO) denied my cat scan and said I have to get an ultrasound instead, go in for that today. Hope an ultrasound is as good as a Cat scan!
Thanks for responding!
Velma

bangormom
Posts: 59
Joined: Dec 2008

Hi Velma,

I don't think a ultra sound is as good as a ct, but you get that done and they'll probably recomend a ct, and maybe then your hmo will approve it. Insurance is a pain in the but!

Have you ever sighned up for the kidney cancer association form? Also acor.org has a kidney cancer mailing list that is really active. I have been getting aton of info from both. With this crappy cancer you really have to be up to date. Right now I have no therapy because sutent did not work and I'm allergic to torisel, so he wants to move me to Nexavar, if he can get my insurance to cover it. I had my scan done a couple of weeks ago and there was significant growth in my mets. But I'm still going, I right now wont give into this monster, I know my pain may increase more and I might get more tired but I'm just not ready to lay down yet.

Let me know how your ultra sound goes, and God bless,

Maryann

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