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hardyc2
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« on: January 28, 2016, 05:38:02 AM »

Hi,

I've been told to introduce myself!

I'm here because I would like some more information for my mother in law.  She does not have internet access, so I'm here to represent her!

She has had bladder cancer for 24 years and about 4 years ago she had a routing scan which showed cancer in both kidneys.  She had a bit of a wonky ureter on one side and had it plus one of the kidney's removed.  She was left with one kidney which had urethelial cancer and weirdly another cancer (carcinoma) popped up one time and then went away after her ureteroscopy never to be seen again!

She seems to be at the stage now that she will need to have the other kidney removed dur to too many tumours in it, plus the ureter, bladder and urethra. 

She would like to know if anybody out there has had any similar experiences &/or what life is like for someone on dialysis if they have no kidneys.  She would like to be given very frank advice on it, worst case scenario's and no holds barred please.

She is a very independent woman and the thought of having to reply on a machine with a very restricted diet is making her wonder whether she should just let nature take it's course with the cancer instead.  Obviously we have all tried to reason with her and say that we are sure dialysis can't be so bad, we have no experience of what it is like ourselves.

I would be so grateful if someone were able to share their experience. (She's 76 by the way).

Thank you in advance.
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Charlie B53
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« Reply #1 on: January 28, 2016, 07:01:37 AM »


Welcome to IHD.  You have come to the right place to share information about dialysis, what it is, how it works, and how it effects your life.  There are many here that like you are not on dialysis but have a family member that is or will be soon. Dialysis impacts more than just the patient, but the whole family around the patient so it is great that you are trying to learn what you can ahead of time.

http://kidneyschool.org/   is a great learning site, explaining kidneys, what they are, how they work, some of the things that go wrong.  Then moves on to Dialysis.  Basically there are two types.  Full explanations of both and how they work.

Keep browsing here and post any question you may have.  Members here are very free with sharing their experiences and often have very constructive advice.

Take Care,

Charlie B53
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cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: January 28, 2016, 07:44:19 AM »

Welcome to the site  hardyc2

       :welcomesign;


Hi, .....

She would like to know if anybody out there has had any similar experiences &/or what life is like for someone on dialysis if they have no kidneys.  She would like to be given very frank advice on it, worst case scenario's and no holds barred please.

Well I've had both my kidneys removed when I was 18. I was already on D then. The only difference I remember was liquid restriction being tighter, and the first year emotionally unstable and indifferent to everything if that makes sense. That was quite a long time ago and there are a lot more meds around now and D treatments inproved. However awful D is, I think it would be one of your MIL's lesser worries.

I hope someone can give you some more up to date info.

Take care, 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
       still on waitinglist, still ok I think
Simon Dog
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« Reply #3 on: January 28, 2016, 10:09:53 AM »

Life on dialysis without kidneys is probably no different than life on dialysis for a long term hemo patient who has no residual function and doesn't urinate.

Dialysis is a hassle, but it is still possible to have a great life.    I am doing that now.
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hardyc2
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« Reply #4 on: January 31, 2016, 03:16:12 PM »

Thank you all so much for your replies.  I will pass them on to her tomorrow.  It's actually so nice of perfect strangers to take the time to reply, I know she feels very lonely at the moment.

To be perfectly honest she's really not looking forward to the prospect of Dialysis, but I am just hoping she gets that far!  She has had some delays in her operations and some tumours have now been there for 5 months, every week on from that is a week that the cancer is growing more and there doesn't seem to be anything coming up apart from a meeting next week, so we will wait and see.  My money's on them talking to her about removing everything as they can't carry on with the treatment.  So dialysis looms...if she makes it through a very big op.

Fingers X'd I'll be back saying she made it through and she is now finding life isn't too bad.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #5 on: January 31, 2016, 04:06:14 PM »

Lots of luck and love to you and your MIL and the rest of your family hardyc2

    :cuddle;
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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
       still on waitinglist, still ok I think
Vt Big Rig
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« Reply #6 on: February 01, 2016, 04:52:21 AM »

Welcome to the site, although I am sorry for you that you had to find it.

Ask any question you need. While many folks are not on here everyday, I would bet that someone here has a similar experience.

You and your  MIL will come to understand there is life after dialysis. Not one I would chose if given the choice but the alternative is grim.

But as one member says often .. he spends 18 hours a week on Dialysis. That leaves him lots of time to live.  A great attitude.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
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