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Author Topic: Desiré 's story....all the way from South Africa  (Read 5661 times)
Des
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« on: June 18, 2009, 11:18:38 PM »
Hi,

I am a 42year old mom of 3 (teenagers). I have Polycystic Kidney's and I'm currently stage 4 (GFR 20) CKD.
I have been married for 19and a half years to the most wonderful hubby in the world.

I am not on dialysis yet but I am on a transplant waiting list here in SA.(between 3-5 years)

I do not have anything else medically wrong with me apart from the CKD.... I suffer from pain as both my kidneys are enlarged and full of systs and kidney stones. I have "studied" a lot of information regarding my disease but everyday I see more info that I didn't know. So...  I am here to give support and to learn all I can about every step of my disease. 

I only found out about the PKD 8 years ago....(I was adopted at 4 and no one knew any medical history on my birth parents)

I love camping and spending time with my family and pets.
I work a 40h week as an accountant an enjoy it lots.

I am a christian and get my strength from God.

GLAD TO BE HERE...........

ps.. I can't spell and English is my second language.   
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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)
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #1 on: June 18, 2009, 11:45:11 PM »
Welcome to our community, Des!  So glad that you found us and decided to join us.  This is a great place for information, support, and even fun!  What is your first language?  I only detected one spelling mistake [systs for cysts]  I notice that we get our strength from the same source!
You will soon find that this is much more than a website - this is a genuine caring and sharing family :grouphug;  so you now have family members all over the world!
So keep reading and please 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;
Des
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« Reply #2 on: June 19, 2009, 12:14:44 AM »
Thanks,
 My first language is Afrikaans.
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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)
willieandwinnie
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« Reply #3 on: June 19, 2009, 03:26:08 AM »
 :welcomesign; Des. Glad you joined our family. We are a wonderful source of information and support and look forward to hearing more from you.  :cuddle;
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willowtreewren
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My two beautifull granddaughters

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« Reply #4 on: June 19, 2009, 06:33:25 AM »
Hi, Des,
So glad you found us here at IHD. My husband also has PKD. so does his sister and our daughter. that's life!

There is so much to learn here.

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. :)
lola
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« Reply #5 on: June 19, 2009, 08:52:06 AM »
 :welcomesign;
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www.caringbridge.org/visit/ottomachado
MandaMe1986
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« Reply #6 on: June 19, 2009, 09:00:56 AM »
 :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.

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« Reply #7 on: June 19, 2009, 09:58:01 AM »
I think you write very well.  Thank you for finding us.  At the bottom of your typing space is a "spell check" that may help you.  It helps me!  ;)

I hope you get your new kidney soon.

                                      :welcomesign;
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Inara
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« Reply #8 on: June 19, 2009, 03:18:17 PM »
 :welcomesign;
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*Primary Caregiver of Leslie, my best friend.  She's been on dialysis for 9 years.
*Dialysis Nurse for 9 years
*HUGE Sci-Fi fan!! (Yes, I'm a dork)
*Recovery from broken leg.....85% healed and that's the best it will ever be.....a slight limp is kinda sexy, huh?
Romona
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« Reply #9 on: June 19, 2009, 08:31:50 PM »
 :welcomesign;
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Joe Paul
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« Reply #10 on: June 19, 2009, 10:26:47 PM »
Welcome Des, 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
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #11 on: June 22, 2009, 03:06:57 AM »
Welcome Des.  I only know one thing in Afrikaans - kak in die millie which is a bit rude but funny.  Look forward to getting to know you.
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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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« Reply #12 on: June 22, 2009, 06:21:49 AM »
 :welcomesign;
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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
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« Reply #13 on: June 22, 2009, 06:49:36 AM »
Welcome!!!  I really look forward to reading more of your posts. 
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« Reply #14 on: June 22, 2009, 06:53:20 AM »
Welcome, Des!   :welcomesign;
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« Reply #15 on: June 22, 2009, 04:36:00 PM »
:welcomesign;

I also have a Deziree (probably pronounced the same) who is listed as inactive on the kidney transplant list. I was shocked to find out that 2 of my daughters had a recessive genetic kidney condition that cause kidneys to fail between the ages of 13 and 19. The little one's kidney failed at 13 and the older one, Deziree, has 20% kidney function and is feeling great.

I hope that your kidney keep functioning until a cure is found. This is a great support group. Lots of knowledgeable people. I am glad that you joined the group.
 :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!)
Des
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« Reply #16 on: June 24, 2009, 07:39:53 AM »
Thanks all!

I feel welcome already....
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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)
Des
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« Reply #17 on: October 13, 2012, 08:51:17 AM »
Just an update...
I have now been on dialysis for 2 and a half years. (still hate it)
I use a fistula (very small undeveloped one but it is holding)
I will be on disability from next year, as my employer has called me in and they have decided that I stop working. It is a hidden blessing of some sorts as I am SO darn tired and doing dialysis after work is getting to be a bit much. I just hope we get by with less income.

I have lost a few really good friends these last years on dialysis. I have found that it is a down side to knowing so many ill people - they are closer to death than the others. It was heartwrenching sad and just make me hate this disease more. :'( ???

Lots and lots of them have received transplants and that in itself is an absolute miracle :cheer: :cheer: :cheer: Congratulations to you all! I cant help but feel a bit jealous but it keeps the HOPE alive.

Thanks again for being there for me.IHD.
 :flower;
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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)
cariad
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« Reply #18 on: October 13, 2012, 09:16:53 AM »
Hiya Des! :waving;
I hope the time off work does you a world of good, but also hope that a new kidney gets you back on the job soon.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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Photo is Jenna - after Disneyland - 1988

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« Reply #19 on: October 13, 2012, 12:22:10 PM »
 :waving; Hi Des, good to see an update from you.
How long is the average wait time for a transplant where you live?
Take care.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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us and fam easter 2013
« Reply #20 on: October 13, 2012, 04:03:23 PM »
Well hi there Des,  It's so good to see you and wish you were announcing your new kidney ;)  Soon mabie, so keep the faith ;)  Im glad for you to get to  go on dissability for now.  The break will do you good and rest should improve your health... Love to hear more from you, but wishing you well in your 'time off' and hope you enjoy it.   :grouphug;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
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« Reply #21 on: October 13, 2012, 05:33:59 PM »
Oh my goodness!  Look who it is!  Hi there, Des!  I'm delighted to see you and have to tell you that I've often thought about you and wondered how you were doing.  So, I'm really glad to see you back on IHD.  I still have the complement to the doll I sent to you as your Secret Santa.

I know how much you despise dialysis, and I admire the fact that you are coping with it.  Remember that we are always here for you.
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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."
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My two beautifull granddaughters

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« Reply #22 on: October 14, 2012, 07:07:52 AM »
Hi, Des.

I was looking through the welcomes you got on this thread and it really hit me how much life changes around us.

Many hugs to you.  :grouphug; :grouphug;

You know you are in my thoughts often. I'm looking forward to the day that we can make it to South Africa to visit.

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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« Reply #23 on: October 14, 2012, 06:07:54 PM »
  It's great that you joined.  I trust that you can visit often. 
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