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Author Topic: New to dialysis  (Read 4086 times)
Popsycle24
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« on: September 28, 2013, 07:39:44 PM »
Hi I'm a 33 year old female who found out I had fsgs and nephrotic syndrome 7 years ago. Everything went slow till this last six months. Now I'm waiting for a transplant ( my brother and sister are testing) and I had to start dialysis today. :( I have the neck catheter.
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Fsgs/ nephrotic syndrome 2006
Gfr fell in 2013
Siblings testing for transplant donors
Started dialysis 9/29/13
MooseMom
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« Reply #1 on: September 28, 2013, 10:24:45 PM »
Oh gosh, it must have been an emotionally really difficult day for you. :cuddle;  I am so hoping that both your brother and your sister will be suitable donors and that you get transplanted very soon.  I'm so glad you joined IHD because I am really eager to hear how their tests go.  I have fsgs, too, so I know a bit about how awful that disease is.  Let us know how you are faring on dialysis, and if you have any questions or concerns, please post!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Shaks24
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« Reply #2 on: September 29, 2013, 07:37:00 AM »
Welcome to IHD Popsycle. I hope you make new friends here and get answers to any questions you may have. I am sorry you are having to go through this. I hope it goes well for you and you get your transplant soon.

 :welcomesign;
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Rerun
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Going through life tied to a chair!
« Reply #3 on: September 29, 2013, 09:38:35 AM »
Welcome to IHD.  I'm go glad you found us.  I'm so sorry that you had to start dialysis but consider it a "bridge" to your transplant.  Plus dialysis helps you remember to take your transplant medication.  You don't want to end up back on dialysis!  LOL

I hope your siblings test out soon. 

Rerun, Moderator   :welcomesign;
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Popsycle24
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« Reply #4 on: September 29, 2013, 10:30:24 AM »
Thank you everyone, the first dialysis treatment was good at the center but I felt aweful when I got home, nauseous after I ate hours later, headache and so tired. I'm assuming this gets better? Also when I was n the machine I felt like I had period cramps but they went away as soon as  I was done. Anyone else have that?
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Fsgs/ nephrotic syndrome 2006
Gfr fell in 2013
Siblings testing for transplant donors
Started dialysis 9/29/13
MaryJoe
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« Reply #5 on: September 29, 2013, 07:00:07 PM »
 :waving;  Hi, Popsycle, welcome to IHD. I'm sorry you felt so bad after your first dialysis session, and hope it's only a temporary problem. I'm still pre-D, so can't be helpful on this subject. It's wonderful that your brother and sister are willing to be tested as potential donors, I hope your wait for a transplant is not too long. I'm sure members more knowledgeable about dialysis will be along soon with some useful advice and information, I just wanted to welcome you to the site.  :waving;
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
Angiepkd
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« Reply #6 on: September 30, 2013, 02:13:29 PM »
Hurray for brothers and sisters willing to donate!  Hope D gets better for you and you get a new kidney soon.  I don't normally have any cramping or nausea unless I try to take off too much fluid.  In the beginning I had about 20 pounds of fluid to remove, so I didn't feel all that great some days.  Hang in there.  It does get better!   :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!
502Blues
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« Reply #7 on: November 23, 2013, 07:55:18 PM »
I hope you get a transplant soon. Your body will get used to dialysis but there will be good and bad days. Its very important you stick to the fluid restrictions. The more fluid you have to take off the worse your treatment will be
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1991: kidney failure, undetermined cause
1991: right and left clavicle temporary catheters
1991: catheter for PD
1992:transplant
1998: June, Fistula placement
1998: july, back to dialysis,Hemo
1999: transplanted kidney removed
2001: parathyroidism
2006:march, fstula cant be fixed due to too many stents in damaged vessels caused by temp caths
2006: april, Pd catheter placement
 PD would not drain properly
2006: finally after much pain and misery, AV Graft placed in abdomen, its working fine thank god
Quit dialysis sometime in 2009, had a change of heart and  returned before I died
transferred waiting list time to another city/state and was transplanted almost right away August 9,2013
cassandra
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When all else fails run in circles, shout loudly
« Reply #8 on: November 24, 2013, 03:20:43 AM »
Welcome to the site popsycle24

    :welcomesign;

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
2020 start Gambro AK96

       still on waitinglist, still ok I think
CebuShan
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« Reply #9 on: November 24, 2013, 09:09:32 AM »
   :welcomesign;  Popsycle24!
Glad you found us but sorry that you had to look in the first place!
Cramping can be caused by drawing too much fluid off too fast.
Best of luck to you!
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
kporter85db
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« Reply #10 on: November 27, 2013, 02:16:40 AM »
 :welcomesign;

Can't say that I've ever had period cramps on dialysis......or off dialysis, for that matter. lol  :rofl;

I do hope you get to feeling better though, and for a speedy transplant.
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May/2010 Sulfa based antibiotics killed my already weakened kidneys, almost
Feb/2011 PD catheter placed
July/2011 Started Peritoneal Dialysis
Nov/2013 Started NxStage 5 days/week

Ken
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