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Author Topic: Time to ask for some input  (Read 2933 times)
PaDude
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« on: June 26, 2013, 10:57:51 AM »

Hope I'm doing this correctly.  Long time viewer but not much of a poster.  Reason is that everything has been going along famously while on PD (7 months and counting).  Now I'm staring down the barrel of Major bump in my road.

Back in April i was involved in a car accident (not my fault) that rolled my SUV.  I got out ok but when the ambulance came I decided to go to the hospital and make sure my catheter and abdomen were in good shape.  It was there when they did the CatScan that they found a "mass" on my right kidney.  Ironicaly the ultrasound found no abnormalities.  Went hime and talked to my GP, he recommended another CatScan w/dye to confirm.  Long story sortened I'm having a radiacla nephrectomy on 7/8. 

I've got to tell you I'm plenty scared.  The transplant center now has me as inactive until the pathology of the mass is done.  My surgeon (urologist) tells me that he can do the surgery without harming the peritoneum, the neph isn't so optimistic.  Even though I had a fistula created back in March I really wan to stay on PD.  My biggest fear is the surgery, I'm one of those people who hadn't had any medical issues until my kidneys started to fsil, now I'm looking at what I consider major surgery.

Please any others with this experience or what I can expect in the coming months would be immensly appreciated.

BTW - this board has been a blessing to me over the past few years as I face reality.
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Sydnee
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« Reply #1 on: June 26, 2013, 11:55:54 AM »

Glad you didn't get hurt when you rolled your car.
I'll pray for you. 
Just recently one of the ladies on here had both kidneys removed. She could probably give you some insight.
I wish you the best

I would see if the moderators can move this to home dialysis or general discussion sections. 
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After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14

Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
Mother to Gehlan 18, Alison 16, Jonathan 12, and Evalynn 7. All still at home.
www.donate2benefit.webs.com
MaryD
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« Reply #2 on: June 26, 2013, 04:48:55 PM »

I'm on CAPD and recently had a hernia repair which ended up perforating the peritoneum.  It took 2 weeks before I could start small fills and 4 weeks before I got back to normal fills.  You may be able to get back to PD if they are careful with the surgery.  I was able to get by with very careful diet as I've still got some kidney function left.  (The thought of emergency HD kept me on my diet)  I have also previously had a couple of other major surgeries, which didn't bar me from PD.

I'll keep my fingers crossed for you on 7/8.      :2thumbsup;
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Angiepkd
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« Reply #3 on: June 26, 2013, 05:05:26 PM »

Best of luck to you!  I am scheduled for a bilateral nephrectomy this Friday, and am plenty nervous!  If you search nephrectomy on the main page of this site, you will see some posts from others who have had this done, and I think some are on PD.  I have PKD, and my kidneys are very large, so the removal must be done through a large incision.  Hopefully yours will be done laparoscopically?  I am on home hemo, and have found it not so bad.  Don't lose hope if you have to use the fistula, even for a short time until you heal.  I am sure someone will answer you who has been through it.  I will keep post after my surgery to let you know how it goes.  Sending prayers that the mass is nothing to be concerned about.  Try not to worry!   :cuddle;
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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!
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