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Author Topic: Liver resection after kidney transplant?  (Read 2480 times)
Angiepkd
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« on: September 10, 2015, 08:53:49 PM »

Has anyone out there with PKD also been diagnosed with PLD (polycystic liver disease)?  I have always known that multiple organs had cysts, but the liver never bothered me.  One day I had severe shoulder pain that stemmed from a huge cyst on my liver.  I had a liver cyst fenestration during my double nephrectomy almost 2 years ago.  This stopped the shoulder pain, and I thought the problem was resolved.  Recently, my liver has begun to enlarge and is now palpable on my abdomen (which really seems to excite interns).  I have a friend who had a resection of almost half her liver at the mayo clinic in Texas.  Since most people who have PLD due to PKD still have normal liver function, I wonder if it is something I should consider.  I have a lot of pain in my upper stomach and back, and it's starting to be difficult to sleep.  My friend said she was glad she had it done, since she was in tremendous pain, but the recovery was much longer than transplant.  Just trying to get another person's perspective.  Any help would be greatly appreciated!  :stressed;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: September 12, 2015, 02:56:00 PM »

I'm sorry you have your liver pain now Angie. I would discuss it with a transplant Dr you can talk to, but as me, I would have the resection done because it's causing so much pain. Just make sure they know they can't give you any blood that's not leukocyte depleted.

Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Angiepkd
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« Reply #2 on: September 16, 2015, 06:44:55 PM »

Thanks, Cas!  I am afraid that I will have to start talking to the liver team, with or without my kidney docs approval.  I feel like I am pretty tough, but it is starting to get to me. I had to take a quick flight to Florida and back on Monday, and was pretty miserable the whole time.  I will see what the kidney doc says when I return on the 24th.  They usually just change the subject because I am finally doing well with the new kidney.
Logged

PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
lainiepop
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« Reply #3 on: September 17, 2015, 05:36:18 AM »

I know it's not the same thing but I had a bowel resection post tx with no adverse effects to the kidney. Xxx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
Angiepkd
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« Reply #4 on: September 17, 2015, 06:41:09 PM »

Thanks laniepop!  I worry about any surgery after transplant.  So many GERMS in a hospital!  I have put off another procedure for the same reason.  Kind of feel like I have been through enough this year!
Logged

PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
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