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Author Topic: Hello from Washington :)  (Read 2438 times)
loopywinks
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« on: August 12, 2009, 10:26:08 AM »
Hello,

I am new here..just joined yesterday!  Thank you so much for making this forum available.

I have a genetic kidney condition that is causing my kidneys to fail. My twin brother transplanted almost 12 years ago (my dad gave him a kidney) and he is still doing very well.  He has Alports Syndrome and now wears hearing aids too.  They told me that it only typically manifests in males, but here I am.. I have a 10 (almost 11) year old son who was diagnosed pretty much at birth and he likely has the same condition that my brother has.  My son now wears hearing aids.

I have been followed by a nephrologist for years and was pretty stable until the last couple of years,  My creatinine is now hovering at around 3.8 and I am tired all of the time. My GFR is at about 13.  My doctor has been entertaining the idea of PT Dialysis.  I recently made it onto a transplant list at Swedish Hospital.  They say that I am a good candidate for a "preemptive" transplant.  I have no idea how this is all going to turn out and I am pretty anxious. 

I have been reading your posts and it is wonderful to see healthy, active, and pleasant folks here.  I really appreciate the opportunity to be part of this forum!

Thank you so much!     :flower;
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loopywinks
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« Reply #1 on: August 12, 2009, 10:38:49 AM »
Hello again...

By the way.. My name is Tracy  :waving;
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monrein
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« Reply #2 on: August 12, 2009, 11:10:13 AM »
Hi Tracy and welcome.  So sorry about your family's too vast experience with ESRF.  I hope you'll post often and I really hope that the preemptive transplant comes through for you.  :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
willowtreewren
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My two beautifull granddaughters

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« Reply #3 on: August 12, 2009, 11:12:56 AM »
Hi, Tracy.

PKD runs in my husband's family. Our daughter has it, too.

Welcome to our IHD family! You'll be able to find support and information here!

 :welcomesign;

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. :)
cookie2008
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« Reply #4 on: August 12, 2009, 12:17:59 PM »
Hi Tracy and  :welcomesign; to IHD.
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Started PD in 11/07
Started Hemo in 7/08
Started NxStage 5/09
tyefly
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This will be me...... Next spring.... I earned it.
« Reply #5 on: August 12, 2009, 02:04:42 PM »
  Hello Washington......    I am in washington today too....  Vancouver...... I also cross the river to the Oregon coast ... I love it there too...   Good to have you hear....... I am new too....Only been here few months......Lots to learn..... No place better  that  IHD....... the people here are great....
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
willieandwinnie
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« Reply #6 on: August 13, 2009, 04:53:34 AM »
 :welcomesign; Tracy. So glad you found us. Please look around the sigh and see all the information and support that is to be found here. Please post often so we can get to know you and ask your questions. We are here.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
paris
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« Reply #7 on: August 13, 2009, 09:16:37 AM »
Hi Tracy.  WOW, your family has dealt with kidney disease for a long time and by many members.  I am sure we can learn from all of your experiences too.   Let us know how the preemptive transplant process goes.  Several members have had preemptive transplants and they may beable to help you with any questions.  We are also here for support and we do care about each other.   :cuddle;  Looking forward to reading more of your posts,  Welcome to IHD   :2thumbsup;



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.
loopywinks
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« Reply #8 on: August 14, 2009, 10:23:45 PM »
Thank you so much for all of the kind messages!!

I think I will like it here :)  I truly appreciate the real straight talk I see.  I can tell that there are many experienced folks here!

Take care and have a wonderful weekend!

Tracy 
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Bajanne
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« Reply #9 on: August 15, 2009, 07:33:41 AM »
Welcome to our community, Tracy!   I am intrigued by your screenname - Loopywinks!  Tell us about it.
I am glad that you are appreciating what our site is all about.  We are definitely more than just a forum - we are now a genuine family :grouphug;  Just take advantage of all this site has to offer - read a lot and post a lot.




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;
Romona
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« Reply #10 on: August 15, 2009, 08:01:35 AM »
 :welcomesign;
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #11 on: August 15, 2009, 04:18:40 PM »
welcome.
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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.
loopywinks
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« Reply #12 on: August 15, 2009, 10:41:25 PM »
Quote from: bajanne2000 on August 15, 2009, 07:33:41 AM
Welcome to our community, Tracy!   I am intrigued by your screenname - Loopywinks!  Tell us about it.
I am glad that you are appreciating what our site is all about.  We are definitely more than just a forum - we are now a genuine family :grouphug;  Just take advantage of all this site has to offer - read a lot and post a lot.




Bajanne, Moderator

LOL!!  Loopy was my nickname when I was a camp counselor at a resident  camp almost 20 years ago. I still have friends calling me Loopy :)  Winks is the name of a cat that I had.  She lived 19 1/2 years and recently passed away in March.  Loopywinks became a name I use on the computer because it iworks well as a username in many palces :) 
Thank you for asking :)
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