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kennebecriver
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« on: October 24, 2008, 09:37:33 AM »
I just started on hemodialysis and it is going pretty well. I have polycystic kidneys and so did my mom and sister. I had been putting off dialysis as long as I could. My numbers were terrible, but I had no "bad" symptoms and did pretty good for a long time.

This spring I started being evaluated for a transplant. One of the last things I had to do was to have parathyroid surgery done. I went to Mass General to have this done at the end of September. By that time, my symptoms got much worse. My lungs were filling with water and so was the cavity around my heart. My legs and lower back were swollen. I couldn't breath and was very fatigued. Climbing a flight of stairs almost killed me, but I kept on working through it all. I went in for the surgery and because of my weakened state and an allergic reaction to the anesthesia, my heart stopped pumping efficiently and the had to shock my heart into a normal rhythm. They never did the surgery and I ended up in intensive care for 4 days.
There the put a catheter in my leg and started me on 24 hour dialysis. I was unconscious for 1 whole day! After 4 days I was transfered to the "transplant floor" where I started hemodialysis ever other day for f hours at a time. (I had a fistula done in my arm back in March of this year.) Since then I've been going to the hospital M-W-F afternoons for 4 hours at a time. I'm still working full time, that's why I have to go at night.

I really don"t care for the dialysis. I leave work at 3pm and get to the hospital early, around 3:45pm, hoping they can put me on early. Sometimes they do, sometimes they don't. I usually don't get home until 10pm. That's a total of 7 hours...yuck! I've started looking into doing it at home; it sounds like a much better way to go.

Besides the agony of sitting in a recliner for four hours, may biggest complaint is the "antsy" feeling I get in my legs...it drives me crazy! Does anyone else have this problem?

Well, that's my long story. Chat with ya later...
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willieandwinnie
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« Reply #1 on: October 24, 2008, 09:48:24 AM »
:welcomesign; kennebecriver. So happy you joined our family. Lots of great information and support here. Hope to hear more from you.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
paul.karen
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« Reply #2 on: October 24, 2008, 10:18:22 AM »
 :waving; :welcomesign;

P&K
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
paris
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« Reply #3 on: October 24, 2008, 10:23:34 AM »
We are so glad you found us!  There is so much information here that will help.  Many have the restless leg syndrom you mentioned and we have lots of members with home hemo experience.  They will all be very willing to answer any questions you have.  We are also a wonderful support system for each other.  People here understand what you are dealing with.  So, post often and  ask lots of questions.  We are here for you  :grouphug;






paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
flip
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« Reply #4 on: October 24, 2008, 11:28:52 AM »
 :welcomesign; sounds like you may have RLS. There are several good drugs on the market for it. I take Sinemet and haven't had a twitch since I started taking it.
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That which does not kill me only makes me stronger - Neitzsche
VeloTypo
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« Reply #5 on: October 24, 2008, 11:54:12 AM »
Welcome, I am a newbee also.

It sounds like you waited too long to get on dialysis, but then again I understand why you put it off for so long!!
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monrein
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Might as well smile
« Reply #6 on: October 24, 2008, 12:40:05 PM »
 :welcomesign;  to IHD.  Great site, great people, lots of information, understanding and support.  What more could we ask for, well besides a new kidney ?  Post often.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Joe Paul
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« Reply #7 on: October 24, 2008, 02:16:54 PM »
Welcome kennebecriver, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
Rerun
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Going through life tied to a chair!
« Reply #8 on: October 24, 2008, 02:28:20 PM »
Ken, welcome to IHD.  Sounds like the antsy feeling in your legs is RLS (Restless Leg Syndrome).  I hate it too.  Once your electrolites are back in line they should calm down.  Best of luck and I'm glad you found us.

                                  :welcomesign;
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #9 on: October 24, 2008, 03:48:43 PM »
Welcome to this wonderful community!   The IHD family is one bright spot on this renal journey.  We are glad that you decided to join us, and i can guarantee you that you will find this site very helpful.  It is full of information, support and even fun.  Here you have lots of virtual shoulders to lean on - all over the world! 
some people have said that quinine helps with  RLS (Restless Leg Syndrome).  tell you doctor about it, and see what can be done.
Please know that you are now a part of our family.   :grouphug;  Post often and let us know how you are doing.


Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
jwaynebo
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« Reply #10 on: October 24, 2008, 04:35:21 PM »
 :welcomesign; kennebecriver

You came to the right place. These people are awsome. :yahoo;
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Peace,

Jeffrey

"I'm pullin' for ya, We're all in this together." - Red Green
Romona
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« Reply #11 on: October 24, 2008, 08:45:30 PM »
 :welcomesign;
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Ang
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« Reply #12 on: October 24, 2008, 08:50:19 PM »
 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
G-Ma
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« Reply #13 on: October 24, 2008, 09:33:34 PM »
 :welcomesign;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
pelagia
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« Reply #14 on: October 25, 2008, 03:40:03 PM »
 :welcomesign;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
jessup
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Gemma - the tucker monster
« Reply #15 on: October 25, 2008, 09:17:25 PM »
 :welcomesign; :flower; :beer1;
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devon
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« Reply #16 on: October 27, 2008, 07:46:48 AM »
Welcome! 

I totally understand what you mean by the amount of time spent on dialysis days!  I've begun to think of it as my other job because it takes that many hours out of a week!

-Devon
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Razman
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« Reply #17 on: October 27, 2008, 09:25:57 AM »
Great to have you  "aboard"  and thanks for sharing your story.  I hope to keep working when I start but it sure seems like long days.
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