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Author Topic: Double Nephrectomy - Billateral Kidney removal  (Read 9933 times)
whiskeyfrank
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« on: September 03, 2009, 10:13:54 AM »

Im just waiting for a date for my both Kidneys to be removed and wondered if anyone else had had both removed.

Ive got PKD but mine are very, very large now, both larger than footballs and about 17" long. They are causing me severe pronblem breathing, eating and  keep hemorraging. I look pregnant - and im a man   :oops;

Ive got a living donor but  there is no room so im having both whipped out.

I know a lot of people who have had a donation but no one whos had kindeys removed competely.

Cheers

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PKD - diagnosed 1986
Fistula added July 2009
Bilateral Nephrectomy Oct 2009
Fistula Failed Oct 2009
HD started Oct 2009
Live donor from mum Jan 4th 2010
mum and me both great

Started a blog on my condition from stable now to Living Donor transplant (hopefully)

My Blog - http://pkddiary.blogspot.com/
glitter
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« Reply #1 on: September 03, 2009, 02:47:45 PM »

My husband had both completely removed- one crushed in a bike wreck and one to cancer- he did okay  But of course no pee at all.
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
Rerun
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Going through life tied to a chair!

« Reply #2 on: September 03, 2009, 09:13:58 PM »

Sounds like you will be relieved to give BIRTH!   Man!  Get those out of there and then concentrate on your transplant. 

You won't pee, but you can drive forever without a break!!!   


                                                     :cheer:
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chopps
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« Reply #3 on: September 04, 2009, 12:15:42 PM »

Hi
Had both mine out. Great advantage when out for the day do not need the loo!!!!!!!!!!!!!!
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cloud393
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« Reply #4 on: September 04, 2009, 01:46:06 PM »

Interesting that they will remove both pkd kidneys.  I also have large pkd kidneys (larger than fooballs) and my surgeon says no to removal. He says it's too risky.  Maybe I need to push more for it. I know how you feel having those big things in there.  I wish you luck and let us know how things go.
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May you live as long as you want and never want as long as you live.
*kana*
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« Reply #5 on: September 04, 2009, 03:48:57 PM »

I had mine out in June of this year and lost a lot of inches in my waist area.  I also had large PKD kidneys that bled and gave me lots of problems so it is a relief for them to be gone.  My friend was donating a kidney to me and at the last minute they decided to send her kidney to pathology instead of giving it to me.  I really kind of miss peeing but I don't miss looking down and seeing that my gut stuck out farther then my boobs.  I lay down on the bed all the time and suck in my belly.....oh that feels so good to be able to draw it in.  I can eat a whole lot more without getting severe back pain. 

I will admit that for me the recovery was difficult.  I wasn't given adequate pain control in the hospital or when I went home(only OTC tylenol) so I was kind of miserable for a bit. 
I was doing hemo post Neph and my blood pressure went out of control.  I am back on PD and things seem to be better controlled. 

I wish you the best of luck on your transplant.   
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PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014
Ang
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« Reply #6 on: September 05, 2009, 01:27:14 AM »

had  both  of  mine in  jan 08 and 09,both  large / pkd  , lost  about  8kilos,cant  pee :stressed; feel  heaps  better,not  so  bad  when  i  overload  wth  fluid. yeah  yeah  naughty  boy,heard  it  all  before :rofl;







EDITED:Fixed smiley tag error-kitkatz,Moderator
« Last Edit: September 05, 2009, 11:02:15 PM by kitkatz » Logged

live  life  to  the  full  and you won't  die  wondering
whiskeyfrank
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« Reply #7 on: September 07, 2009, 03:17:57 AM »

Thanks for your thoughts. The reason my surgeon wants both out is that there isnt room to put the new one back in without straining it, and taking one out may cause an infection in the other. Plus they are also concerned they may have cancerous cells in them also.

The surgeon i have in the UK is the one of the most successful and was one of the pioneers of live donation so i really trust him, plus hes got the highest % success rate in the UK, so pretty much trust him to do whatever he feels is right.

How long did it take you to get back to work? (im desk bound these days, so nothing physical)
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PKD - diagnosed 1986
Fistula added July 2009
Bilateral Nephrectomy Oct 2009
Fistula Failed Oct 2009
HD started Oct 2009
Live donor from mum Jan 4th 2010
mum and me both great

Started a blog on my condition from stable now to Living Donor transplant (hopefully)

My Blog - http://pkddiary.blogspot.com/
Des
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« Reply #8 on: September 07, 2009, 08:27:10 AM »

I have large PKD kidneys as well.... It seems that I will only have the problem one removed.... the doc said 6 weeks off work is a fair time... I am not sure for both though as you will have to get the dialysis thing down to a t before you go back to work.

Good luck with yours... it is a VERY big op.   
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
*kana*
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« Reply #9 on: September 08, 2009, 07:17:08 PM »

Quote
How long did it take you to get back to work? (im desk bound these days, so nothing physical)
 

I was on PD and when they took my kidneys out they had to remove my cath because of risk of infection.  I then had to go on Hemo and wait to have my PD cath placed again, which was 8 weeks post bil Neph.  I am now 1 week into PD again and getting ready to go back to my very active job.  So, it has taken me about 13 weeks to get everything settled and back to near normal.   
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PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014
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