Dialysis Support
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Bilateral nephrectomy

Hi

Jus a quick question. Has anyone had both their native kidneys removed whether that was because of Polycystic kidneys or anything else. I’m severly hypertensive, had seizures and even been in a coma due to my blood pressure and there is consideration of removing my kidneys but it’s a huge operation. Just wanted to hear from any people with experience

Thanks

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Hi ! My boyfriend of 5 years had a bi lateral nephrectomy this past November 2017. He had cancerous tumors in both. I can try to help you with questions as much as I can.

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Hi Kristy123.

I'm sorry to hear about your boyfriend. At least he is fortunate enough to have someone like you.

In terms of my story, I had nephrerectomy of my left kidney a month ago due to upper tract urothelial cancer and I'm now convinced my right kidney also has cancer.

Can I ask why your boyfriend had his two kidneys removed? What type of dialysis is he on? How is he coping?

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P.S.: When I say why he had his kidneys removed I meant what type of cancer caused him to have them removed. Urothelial or the more common one (renal cancer)?

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Sorry to hear about your unfortunate way also.

This situation is def trying on a relationship, there is no denying that.

He had renal cell carcinoma, he had dialysis 3 times a week. Everyday is a new challenge, it’s funny because the doctors can’t ever prepare for you what life is really looking like once they are both gone.

But he is still working part time, and he’s tired most of the time. Fluid restriction is very tough to follow. Because he is unable to urinate once they were both removed.

I wish I could paint a beautiful story, but the truth is, it’s tough.

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Hi Kirsty,

Did he have them removed at once ? how was his recovery?

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Yes both removed. Recovery was a little rough.

But definitely manageable. He is 48.

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Thanks for your candour Kristy123. I'm the same age (49) and dreading the prospect of losing my 2nd kidney. Is it mainly the physical effect of the fluid restriction that makes you tired or the going back and forth for dialysis? Is he likely to get a transplant? What country are you based in?

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It’s just everything I think, it’s just not an easy way to live by any means but it is possible. The actual procedure is not bad honestly, by 3 weeks he was ready & able to return to work. He has minimal scaring. He is on hemodialysis. We live in the USA

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Good to know it's physically manageable. The mental impact is still a major concern for me. Thanks for the advice so far. Will keep you posted. Stay well.

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Yes please. I will keep you in my prayers. If I can help in anyway I’m happy to. Just remember to stay positive. And ANYTHING is possible.

As long as you put your faith. Don’t. E a stranger. We’re here for you.

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Thank you for your kind words and thoughts, especially on staying positive, I certainly will. Although there's an ocean between us (I live in the UK), its comforting to know you're both just a message away!

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Anytime ! I absolutely mean that too. You can do this !

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Both my kidneys were removed in June 2016. I immediately felt better. Both kidneys were infected, shrinking, and had hundreds of inbedded stones. So when removed the took the toxins out and after recovery I no long looked gray (the color of kidney disease) and I felt better. However I do suffer with extreme hypo blood pressures resulting in fainting and seizures. I guess I would definitely taokk to the docs about this possibiity also.

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Yes, my son! When he was 5 months old he was airlifted to Children's w/a potassium of 9. He was diagnosed "Congenital Nephrotic Disease" which only means born with bad kidneys-they dont really know why he went into ESRD. Two weeks later they removed both kidneys; they were causing him more harm & his labs were incredibly bad! They removed them & placed a "Hickman" line & then a PD cath. He was HD while the PD cath healed. I cant remember if it was before or after removing his kidneys but they placed him on a CVVH machine (Continuous Veno Ventricular Hemodialysis) & took off FOUR pounds of excess water (remember, he was 5 months old @ the time!) He had a very rough first 5 years of life but for 18 years he was awesome!! I gave him a kidney 21 years ago which is now failing & he's now back on HD.

The rough first 5 years of life was NOT because of having both kidneys removed tho. He had cancer (Post Transplant Lymphoproliferative Disease), which caused seizures (which is how we found out he's allergic to anti-seizure meds) & so on. None of which was because of no native kidneys.

I'm sorry your going thru all of this! I hope my reply gives you a little comfort, knowing that my kiddo has lived 23 years w/o native kidneys. :)

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