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Author Topic: reversing decision re donor with vonWillebrand's Disease  (Read 1481 times)
Everlasting
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our community

« on: December 20, 2009, 08:11:54 AM »

For those of you who have stood by and followed up my rollercoaster re physicians supporting my being a donor for my partner Victor -- the news is good!!  I have vonWillebrand's disease which is an inherited disease that involves the clotting of blood -- it is classified in the hemophilia family and last week my disease has been ruled out as reason to eliminate me as a potential donor (our blood types are compatible).
     There is a simple solution for me when a bleed occurs  --  a hormone is injected and it creates the substance that is required for my blood to clot.  From the beginning (about 9 months ago) I had been eliminated from a list of potential donors due to the presence of this disease.  After many hour of proposals, letters of support etc.  my hematologist has supported my wish to donate and it would seem the nephrologist is willing to acknowledge her input !!!
     My blood situation will be managed by the hematologist and it will not affect my partner as the donated kidney is "flushed" out before it is placed in the recipient.  This a grand, most grand, Christmas present that anyone such as myself could receive.....weither it will happen that remains to be seen but we are at least on the same page!!
Wishes for comforts in the New Year to you all....Everlasting
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boswife
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us and fam easter 2013

« Reply #1 on: December 20, 2009, 06:17:17 PM »

WoW!!  how wonderful for you BOTH and how amazing for you to be so generious.. THis has to be such good news!!  One lady at our center is getting a kidney (God willing, and her foot issues doesnt stop it) on wednesday... This wednesday... How excited she is, so i've seen first hand how very excited both parties are.  Bless you for doing this, hope it keeps on the right track and all goes well..  Merry Christmas


:-)   :rudolph;
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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
*kana*
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« Reply #2 on: December 27, 2009, 04:25:36 PM »

Congratulations to the both of you!  It is a wonderful feeling to get things settled and moving forward!
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PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014
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