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Des
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« Reply #50 on: September 18, 2009, 07:04:27 AM » |
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Thanks wtw.......
talk is cheap,,,, Now it is a reality.
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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)
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paris
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« Reply #51 on: September 18, 2009, 09:43:19 AM » |
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Surrounding you with good wishes  |
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 It's not what you gather, but what you scatter that tells what kind of life you have lived. |
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Des
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« Reply #52 on: September 20, 2009, 11:09:42 PM » |
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Thanks Paris,
I am chicken as hell!
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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)
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Des
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« Reply #53 on: October 19, 2009, 03:14:08 AM » |
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I am SO tired.!!!!!
You will never believe this or maybe you will.
The neph just phoned me 5 min ago and "we looked at your file and we decided not to remove the kidney in Jan anymore" aaahahhhhhaaaaaaa!! I wish they will just make up their @#$&^%^ minds already.
He now thinks that I will go a few years before that happens. Did my kidneys improve or shrunk? Why did he insist that I find a donor soon? Why did he send me to the surgeon to get checked out? Why did the transplant coordinator tell me that I need to get the kidney removed for me to remain on the list? I like that idea of not having it removed, but can they PLEASE let me off this rollercoaster ride. I don't want to ride anymore. I am starting to think I am their money making machine or something.
I am happy but worried..... how is this going to affect my place on the transplant list? I don't think my live donor is going to stick around for that long.
The constant pain will now be with me for a long time I suppose. Well he said that even if I remove the one I will still have pain from the remaining one.
to be continued......
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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)
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RichardMEL
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« Reply #54 on: October 19, 2009, 05:39:51 AM » |
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Umm so I am a little confused (as I guess you are!) What did the neph say when you reminded him that this is causing you pain which you don't need, and that the transplant team want you to get that old kidney removed to stay on the list - which you DO need?!?! If you have the live donor lined up they should be supporting that action IMHO as we all know that live scheduled donations are better for all concerned and I think a pre-emptive transplant would also be prefered.....  ? Did s/he offer a reason for why they now don't want to take it out? I'd definitely want a reasonable explanation given the pain and transplant issue.... |
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3/1993: Diagnosed with Kidney Failure (FSGS) 25/7/2006: Started hemo 3x/week 5 hour sessions  27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!!  BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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Des
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« Reply #55 on: October 19, 2009, 07:19:24 AM » |
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Thanks RM, It is so frustrating... I understand why they rather want me to keep it in. If they remove it I will start D and he wants to prevent that at all cost. I get that and that is quit admirable but he must decide and stick to his decision. It drives me crazy... I spoke to the transplant coordinator and she will discuss it at the next meeting. I am still on the list but was not listed as urgent. (which is a good thing because its not urgent yet, but it will be if they remove the kidney) Pain is a constant... the level just varies but is is never zero. I suppose if you learn to live with it ... it is still better than D. I don't know. Damn if you do damn if you don't. Thanks for caring. |
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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)
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paris
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« Reply #56 on: October 19, 2009, 02:01:45 PM » |
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Oh Des, I am sorry for all you are going through. It is quite an up and down ride for you. None of this is easy, is it? I'll keep thinking good wishes and hope someone gets this all figured out for you.  |
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It's not what you gather, but what you scatter that tells what kind of life you have lived. |
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Des
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« Reply #57 on: November 19, 2009, 03:16:10 AM » |
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It is now official... I am having the left kidney removed in Jan and will have a transplant 6 weeks after that.
The ball is now in motion.... My donor was phoned and she will complete her final workup and we will send in the application to the government and (if God willing) I will have a transplant end Feb or beginning March. I am glad the two docs could come to some agreement on my treatment because it was just rediculous.!(spelling sorry) I am going to get dialysis for the 6 weeks after my left nephrectomy.
I will keep you posted.
(Thanks Paris,Richardmel and WTW you are the best)
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Logged
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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)
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willowtreewren
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« Reply #58 on: November 19, 2009, 04:47:25 AM » |
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Oh, Des. I'm so glad you now KNOW what is happening. Waiting is not so hard when you are waiting for something specific! Hmm. The best pain in the a** Ha ha ha. Love you, Des. Aleta |
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Wife to Carl, who has PKD. Mother to Meagan, who has PKD. Partner for NxStage HD August 2008 - February 2011. Carl transplanted with cadaveric kidney, February 3, 2011. |
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cariad
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« Reply #59 on: November 19, 2009, 09:46:14 AM » |
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Great news that you have a plan in place, and communication between doctors.
I'll be hoping that everything goes smoothly for you on the bureacratic side. February/March is right around the corner. This sounds like it is really coming together for you! Congratulations!
Good luck, Des. Hopefully you can enjoy your holidays knowing that the real excitement begins in 2010.
Best wishes! (Smilies not working for me - flowers and hugs to you!)
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria
People have hope in me. - John Bul Dau, Sudanese Lost Boy
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Hanify
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« Reply #60 on: November 19, 2009, 01:57:25 PM » |
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Oh oh oh how exciting!
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008. Now on PD with a cycler. Working very part time - teaching music. Love it. Husband is Paul (we're both 46), daughter Molly is 13.
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Des
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« Reply #61 on: November 19, 2009, 10:43:07 PM » |
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Thanks all .... I just pray and hope it goes well...... more than well. Just perfect.....
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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)
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draven
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« Reply #62 on: November 30, 2009, 11:35:09 PM » |
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Great News!!!
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YLGuy
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« Reply #63 on: December 01, 2009, 12:02:56 AM » |
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Jean
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« Reply #64 on: December 01, 2009, 01:01:47 PM » |
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Hugs and Best Wishes Des. Hope it all goes smoothly for you. I can hardly wait. Just imagine how you must feel!!!!
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One day at a time, thats all I can do.
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I Hate Dialysis Message Board
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