I need info from people who have had both kidneys removed?

[Des]

It seems like this is my next step.
Please tell me about the op.
Why were they removed?
How long was the hospital stay?
The recovery time?
Did you go back to work?
What medication you take?
What you feel like? Nausia, tired, itching and any others?
Are you on Hemo or PD? 
If your on HD how many hours hemo?
Anything else you can share will be appreciated ?

[Wattle]

Hi Des,

I am about to have one PKD kidney removed. I am currently on PD and hoping to stay on it through the ordeal. You might find this post of interest.

http://ihatedialysis.com/forum/index.php?topic=13361.0

[Des]

Thanks Wattle

I have seen the post and even replied on it twice hehehe

It helps a little, but I was hoping to get a bit more info. It seems that removing them does not happen that often.

I see my doc (again) on the 15 July and then I might be getting a more clear answer on the "future" of my kidneys.
I have a live donor (yeah) but I want to schedule the whole transplant thing for Jan 2010. But we cannot always get what we want, can we?
Please keep me posted on your progress..... I REALLY want to know how you'r doing... I can see a lot of similarities between us. I am not on D yet though but heading there fast. Thats why the doc wants to do a "pre-emtive" transplant.

Thanks for the info..... in advance.     

[swramsay]

I have had both kidneys removed due to recurrences of bladder cancer.
I had my bladder removed in 2004. My first kidney was removed in 2006. My second kidney was removed in Sept 2008. I have been on hemo dialysis since. In-center for 7 months followed by home-hemo. I dialyze 6-7 days a week for 2 1/4 hours each. I take binders, epo, hectorol. Since home-hemo my counts are great. I feel good except for some vision problems which may not be related to the dialysis.

The surgeries were major surgeries. I had full open surgeries - not laporascopic. With cancer it was important to be able to look around plus I had had so many other abdominal surgeries and inner 'rearrangements' that laporascopic was not feasible. Recovery time was 4 - 5 weeks. Longer for some. Hospital stay about 5 days.  I am doing everything I was before with 95% stamina. I think if i focused more on getting back in good shape, I'd be at 100%.


Feel free to ask anything.

Wendy

[Des]

Thank you so much Wendy,
I will contact you.

[Yvonne]

Weny does that mean you have a stoma like John? (Urostomy)

[swramsay]

When my bladder was removed, they made a new internal bladder out of a portion of my intestine and hooked it up to my existing urethra and ureters. I voided normally. Not that both kidneys are gone, it just sits inside me still hooked up to the urethra. I irrigate it every couple of weeks. The hope is that in a few years after no more recurrences, I will be able to get a kidney transplant and use my 'neobladder' again.

[*kana*]

Please tell me about the op. It was very painful for the first couple days.  Couldn't hold any food down for 2 weeks 
Why were they removed? PKD, complex cyst that they were constantly telling me "could" be cancer.  Hemorrhage into cysts with aspirin therapy
How long was the hospital stay? 7 Days
The recovery time? 5-6 weeks to feel better but I got a bad cold and then pleurisy.  Had my surgery June 17th so still recovering

Did you go back to work? yes, planning on it
What medication you take?  Phos binder, epo, iron and zemplar
What you feel like? Nausia, tired, itching and any others? very tired but my hemoglobin dropped to 7 and I refused transfusion.  Terrible sweats/hotflashes due to the trauma to my body
Are you on Hemo or PD?  Did PD before kidney removal, doing hemo now, getting ready to get cath placed again for PD.
If your on HD how many hours hemo? 4 hours of Hemo
 
Best of luck








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