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Author Topic: I am new at this  (Read 2530 times)
susan parry
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« on: July 16, 2009, 02:26:37 PM »
I am new at this and hope i am doing it right.  i have pkd and am at the end stages of it and i am scared to death.  i have looked at this sight before but only as a visitor. 

i think i have been approved to be on the waiting list (my appointment was Tuesday) and the doc said he felt i would be a candidate but have to wait for the letter. 

i have an appointment in august to go to boston where i will also be listed.

my kidney dr is the best-she says she won't put me on dialysis until i hit 10?  they were suppose to put a fistula in my arm the end of june but i didn't have any good veins to use.  i kind of wanted to try the pd although my kidney dr fights with me on this as she says there will not be enough room in my stomach for the fluid? 

any words of advice from anyone that has been through this would be greatly appreciated. 

thank you
« Last Edit: July 16, 2009, 02:31:21 PM by susan parry » Logged
PKD
On the list 7/23/09
deceased donor transplant 8/5/09
willowtreewren
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My two beautifull granddaughters

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« Reply #1 on: July 16, 2009, 02:31:18 PM »
Susan, take a deep breath. There are many, many folks here with PKD who have much experience. Read through the posts and learn as much as you can. Knowledge is power.

Ask questions and let the community help you on your journey.

As you learn more, I hope you will be less fearful. It is possible to live a full life with PKD and renal failure.

Lean on us. We are here to share and we care.

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. :)
susan parry
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« Reply #2 on: July 16, 2009, 02:38:52 PM »
thank you for your kind words.  everyone does seem to help everyone else on this sight and i have read quite a few of the postings. 
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PKD
On the list 7/23/09
deceased donor transplant 8/5/09
willieandwinnie
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« Reply #3 on: July 16, 2009, 02:52:36 PM »
 :welcomesign; Susan. I can't help you with the PD questions, my hubby did home hemo and received a transplant in Sept of 07. We are a wonderful group and there will be folks along to answer your questions. Check out some of the older threads as there is lots of information there. Come here and ask your questions and we will be more then happy to answer. We are always a great source of support. Please post often and good luck with getting listed. Let us know how it goes.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #4 on: July 16, 2009, 03:12:59 PM »
I'm assuming your on the short side?  That's why they are saying about the fluid.  I would go with their advice on this - I do pd, but I am quite tall.  If you are short it could be really awful.  Also, if you can aim for doing home haemo it sounds like that is a really good option.  But maybe you'll get a tx soon and avoid it all.   Nice to meet you.  Look forward to your posts.
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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.
monrein
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« Reply #5 on: July 16, 2009, 03:27:24 PM »
 :welcomesign; Susan.  You've found the best place to help you feel just a bit less scared.  Come here often and ask questions or just read about the experiences of IHDers.
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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
susan parry
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« Reply #6 on: July 16, 2009, 03:43:31 PM »
Quote from: Hanify on July 16, 2009, 03:12:59 PM
I'm assuming your on the short side?  That's why they are saying about the fluid.  I would go with their advice on this - I do pd, but I am quite tall.  If you are short it could be really awful.  Also, if you can aim for doing home haemo it sounds like that is a really good option.  But maybe you'll get a tx soon and avoid it all.   Nice to meet you.  Look forward to your posts.

i am 5' 5" but they said my kidneys are twice the size of a normal kidney due to the cysts on them
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PKD
On the list 7/23/09
deceased donor transplant 8/5/09
circleNthedrain
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« Reply #7 on: July 16, 2009, 04:07:10 PM »
Welcome!  I did PD for many years but I don't have PKD.  I'm sure one of our members who is knowledgeable on this subject will chime in.
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1979 Diagnosed with kidney failure
1979 Right arm fistula
1979 Start hemodialysis
1980 CAPD catheter
1980 Start CAPD
1989 Cadaveric kidney transplant
1995 2nd cadaveric  kidney transplant
2007 Start hemodialysis
2010 Still drawin' wind
keefbeer
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« Reply #8 on: July 16, 2009, 04:20:02 PM »
I,ve been on HD
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boxman55
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« Reply #9 on: July 16, 2009, 04:25:31 PM »
Lets keep this the intro section please move your dialysis posts to the proper forum. Thank you

Welcome to IHD

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
keefbeer
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« Reply #10 on: July 16, 2009, 04:26:51 PM »
I,ve been on HD for a good while, PD was never an option even though I am 6ft 5in but my basketball size kidneys have taken up all the space
Try not to worry about your condition, look at the positives in your life even if they are few and far between.

Keef

Earlier post due to fat fingers and typing in the dark.
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MandaMe1986
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« Reply #11 on: July 16, 2009, 04:47:56 PM »
 :welcomesign;
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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
RichardMEL
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« Reply #12 on: July 16, 2009, 09:34:31 PM »
Welcome Susan!! I can't answer your PD questions but sounds difificult if your kidneys are so large with the cysts :(  :cuddle;

Try to not be too scared whatever you wind up doing. We're all here to help support you!!! You'll be fine I'm sure!!

 :welcomesign;
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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!
TeenHatesDialysis
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« Reply #13 on: July 25, 2009, 01:59:05 PM »
 :welcomesign; Susan,

Sorry I am not much help with the PD or PKD as my daughter was on Hemo. I am glad that you are getting on several different lists. You have obviously educated yourself. Prior to listing my daughter, I thought that there was one National List. Get a second opinion on the PD. I interviewed several teams of Nephrologists and transplant teams before I felt comfortable chosing Hemo and we chose an out of state hospital for listing and actual transplant due to the non-steroid protocol.

Best of Luck to you. This is a great forum for reliable information and super support. :grouphug;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
kitkatz
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« Reply #14 on: August 02, 2009, 07:20:06 AM »
Welcome.  You will discover many great support people here.  Come on over and read everything you can on the board. The more educated you are before you start the better treatment options you will have.





kitkatz,Moderator
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Bajanne
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« Reply #15 on: August 02, 2009, 11:40:58 AM »
Welcome to our community!  it is very normal to feel a bit scared as you are faced with new challenges.  But the good news is that you are now part of a family  :grouphug; with people who have been through everything you are facing, plus more! There is a lot of information here - just keep reading, keep asking questions, and keep posting.





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;
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