I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: whiskeyfrank on September 03, 2009, 10:13:54 AM

Title: Double Nephrectomy - Billateral Kidney removal
Post by: whiskeyfrank 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

Title: Re: Double Nephrectomy - Billateral Kidney removal
Post by: glitter 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.
Title: Re: Double Nephrectomy - Billateral Kidney removal
Post by: Rerun 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:
Title: Re: Double Nephrectomy - Billateral Kidney removal
Post by: chopps 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!!!!!!!!!!!!!!
Title: Re: Double Nephrectomy - Billateral Kidney removal
Post by: cloud393 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.
Title: Re: Double Nephrectomy - Billateral Kidney removal
Post by: *kana* 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.   
Title: Re: Double Nephrectomy - Billateral Kidney removal
Post by: Ang 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
Title: Re: Double Nephrectomy - Billateral Kidney removal
Post by: whiskeyfrank 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)
Title: Re: Double Nephrectomy - Billateral Kidney removal
Post by: Des 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.   
Title: Re: Double Nephrectomy - Billateral Kidney removal
Post by: *kana* 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.