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Author Topic: Hello  (Read 3619 times)
openboat
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« on: January 16, 2009, 10:07:19 AM »
Hi!  I've been lurking here for a while and finally decided to register and make it official.   ;D

I've known I have PKD for about 12 years.  I'm 40 now and am reaching the point (estimated GFR was 17 at my last labs) where something will have to be done before too long.  I'd like to have a transplant before I have to go on dialysis, but I know I can't count on it.  My one potential living donor had a negative crossmatch (yay!) and is proceeding with the rest of the tests.

I've been an avid whitewater kayaker and canoe camper for many years, hence the avatar and handle.   :)  In fact, I met my wife on the Ocoee river almost 14 years ago, hopefully a Tx will leave me with enough energy to get back on the rivers.
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willieandwinnie
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« Reply #1 on: January 16, 2009, 10:11:21 AM »
:welcomesign; openboat. Glad you came out of lurking. We are a wonderful group loaded with information and support no matter what relationship you have with ESRD. Please post often and good luck with your living donor. Again, welcome to the family.  :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: January 16, 2009, 12:14:16 PM »
:waving; Open

Glad you found us.  Lurking here is very useful but it is much better and funner once you join in on the fun and discussions.
have you decided what kind of Dialysis you are going to go with?

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
openboat
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« Reply #3 on: January 16, 2009, 12:32:15 PM »
My plan is to go with some flavor of HD, if I can't get the transplant first.  I'd prefer to do HD at home, but I'll wait and see.  My concern with PD is keeping the access clean since I still like to spend time of trails and rivers, and the Chattahoochee river here in Atlanta isn't exactly the cleanest water around.   
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thegrammalady
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« Reply #4 on: January 16, 2009, 12:37:40 PM »
 :welcomesign; glad to have you join us
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s
......................................................................................
If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
MandaMe1986
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« Reply #5 on: January 16, 2009, 12:39:33 PM »
hi  ;D
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
kidney4traci
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« Reply #6 on: January 16, 2009, 01:43:56 PM »
Welcome!  I too love boats, and chose home hemo because the lake water here is not really clean....  but still fun to ski!!  Home hemo has alot of great benefits.  I went with Nxstage.  The links here have lots of info.  BTW, I used to white water raft with my brother when we lived in California.  We went down a class 4 by mistake.  At least that's what he told me!!!  Glad you joined, look forward to hearing your journey. 
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
boxman55
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« Reply #7 on: January 16, 2009, 02:11:48 PM »
Welcome openboat, great that you joined up. We look forward to your posts and updates on your health. A few pics of your adventures would be cool too.

Boxman,Moderator
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
sewerrat4u
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« Reply #8 on: January 16, 2009, 02:58:06 PM »
Yello there Boat!  I'm a novice here too, but seem to enjoy all the positive feedback and interesting post's.
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monrein
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Might as well smile
« Reply #9 on: January 16, 2009, 03:52:19 PM »
 :welcomesign;  and nice to meet another wilderness and white water enthusiast.  I did 11 major canoe trips (usually just two of us and usually fly-ins), including one to the Arctic, after my first transplant.  Never a problem and so much fun.  All my trips have been in northern Canada and on many we saw no one else besides ourselves.  We did 2-3 week trips with each trip getting longer and longer. 
Sorry that you're dealing with CKD but this site is a great resource for both info and support.
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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
Wenchie58
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Always carrying the big silly grin!
« Reply #10 on: January 16, 2009, 04:43:47 PM »
Welcome to the group!  Always share your adventures!
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

WWW
« Reply #11 on: January 16, 2009, 06:17:27 PM »
Welcome to our community!  I love it when lurkers come out into the open.  It means I don't have to try to convince you about this website.  You already know all that we have to offer.  So, it's just 'welcome to the family'  :grouphug;
Looking forward to hearing from you  :flower;




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;
G-Ma
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« Reply #12 on: January 16, 2009, 06:27:04 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
Romona
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« Reply #13 on: January 16, 2009, 06:46:36 PM »
 :welcomesign;
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pelagia
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« Reply #14 on: January 16, 2009, 07:13:17 PM »
welcome! I love the photo and hope to hear more about your adventures.  :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
Zach
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"Still crazy after all these years."
« Reply #15 on: January 16, 2009, 07:41:02 PM »
Welcome to the community!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
jessup
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Gemma - the tucker monster
« Reply #16 on: January 16, 2009, 07:52:58 PM »
G'day and  :welcomesign;
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Joe Paul
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« Reply #17 on: January 16, 2009, 10:24:55 PM »
Welcome openboat, 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
Normie
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Ellie
« Reply #18 on: January 18, 2009, 10:41:46 AM »
Hi and  :welcomesign;
This is a great place and lots of information.
Normie
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Normie

Kidney damage 4/22/07

Predialysis
Wattle
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« Reply #19 on: January 19, 2009, 02:23:02 AM »
:waving;  Hi and Welcome,

I too have PKD. It's great to be educated and make the decision on what dialysis YOU want to do. Knowledge is power.

I hope the transplant works out and dialysis can be avoided for the moment. Good Luck.
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
napala turki
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Have to plan for living
« Reply #20 on: January 21, 2009, 01:15:32 AM »
Quote from: openboat on January 16, 2009, 12:32:15 PM
My plan is to go with some flavor of HD, if I can't get the transplant first.  I'd prefer to do HD at home, but I'll wait and see.  My concern with PD is keeping the access clean since I still like to spend time of trails and rivers, and the Chattahoochee river here in Atlanta isn't exactly the cleanest water around.   

Good choice if you have a chance... enjoy your life while you can..... :clap;
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paris
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« Reply #21 on: January 21, 2009, 07:27:34 PM »
 :welcomesign;  Great intro!  We are glad you aren't lurking anymore.  It is more fun to play in person!  We would love to see more pictures and hear more of your adventures.   Post often and let us know how you are doing.  Ask lots of questions.  Someone will always have an answer.   Glad you are with us   :grouphug;





paris, Moderator
« Last Edit: January 22, 2009, 03:39:08 PM by paris » Logged


It's not what you gather, but what you scatter that tells what kind of life you have lived.
openboat
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« Reply #22 on: January 22, 2009, 01:48:58 PM »
Thanks everyone for the warm welcome! 
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