espie clavecilla
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« on: March 09, 2010, 04:32:34 PM » |
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Hi Everyone!
I'm so happy to be one of the member of this site. My name is Espie 34 years old, from Philippines - a mother of 10 year old boy named Evan Joshua with end stage renal disease. God is good for giving me strength to continue coping with our situations. Soon, my son will undergo his first dialysis - hoping and praying that he can make it.
We call our son EJ, i got chicken fox during my conceiving and maybe that's one reason how he had this disease. His left kidney was removed since he was a 6 months old baby and the doctors put a vesicostomy ( hole in the tummy) to urinates- for 10 years he's urinating thru his stomach. During last summer vacation April 2009 we planned and go to his doctor for operation and suddenly found out that he's right kidney beginning to fail. I am very much afraid of Dialysis.. I cant imagine seing my son on this case sooner. Hope this site will help me a lot.
Again my deepest appreciation to be part of this group.
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galvo
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« Reply #1 on: March 09, 2010, 04:35:49 PM » |
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 espie.You will find a lot of friendship and support here. Say 'G'day' to EJ from me. Best wishes to you both.
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Galvo
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looneytunes
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« Reply #2 on: March 09, 2010, 05:09:02 PM » |
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Hi Espie and welcome to IHD! You'll find lots of great people on here that will be glad to help you in any way they can. Also some other parents of children on dialysis. It is tough to raise a child with special needs (as you well know) and my heart goes out to both you and EJ. I'm looking forward to getting to know you better. |
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"The key to being patient is having something to do in the meantime" AU
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krfm2003
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carebear
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« Reply #3 on: March 09, 2010, 06:15:06 PM » |
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Hi Espie! I am also a mom to a kidney kid. I loathe it and love it. The gifts my child has opened my eyes to...it's just amazing. My son was on hemodialysis for 13 months before transplant. He didn't have any issues really. Some cramping when he was going too dry...but that was about it. I dreaded dialysis for him at first, but then I saw how great it made him feel afterwards with "clean" blood. He had more energy and was able to get his epogen/aranesp through the dializer instead of through shot/injection form. It's not much, but we count whatever positives we can around here! I hope your son handles dialysis well and starts to feel better soon. You'll be in my thoughts and prayers.
Karen
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Mommy to two incredible little boys, one that just happened to need a kidney at 18 months. It's been a ride - but it's been worth every minute of it.  Have you signed your donor card? Matthew's caringbride site: http://www.caringbridge.org/visit/fightingmatthew |
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monrein
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« Reply #4 on: March 09, 2010, 07:06:24 PM » |
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Espie...glad you found us here and I look forward to knowing more about how your son and your family are doing.
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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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okarol
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« Reply #5 on: March 09, 2010, 10:28:34 PM » |
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 Hi Espie, I am glad you are here and hope all goes well for Evan. Sending you best wishes and lots of {{{HUGS}}} - Welcome!
okarol/admin
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espie clavecilla
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« Reply #6 on: March 09, 2010, 11:48:13 PM » |
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In behalf of my son and our family our deepest thank you to all of you... God bless us all..  |
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billybags
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« Reply #7 on: March 10, 2010, 04:36:56 AM » |
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espie clavecilla, First of all welcome to the site. My heart goes out to children that are on dialysis, it doesn't seem fair, but you have to make the most of it, children are more resilient than grown ups. I see through the posts that you and Krfm 2003 have a lot in common, you will be able to find things out from each other. Dont be a afraid to ask any questions on this site. You have a handsome boy there. |
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Yvonne
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Yvonne
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« Reply #8 on: March 10, 2010, 04:42:49 AM » |
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from the  Your son has an Urostomy the same as my husband also with one kidney removed and the other failing and still not on dialysis. I wish your son all the best and hope he is down for a transplant. My husband is too old for a transplant and they are putting off to the last minute before they will let him have dialysis. The best of luck.
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« Last Edit: March 10, 2010, 04:50:28 AM by Yvonne »
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2007- since January 2007 carer to my husband John who has the following, allways been a very fit man up till then.
2007 - January Renal failure
2007 - March Diagnosed with a Horseshoe kidney and bladder cancer.
2007 - June One kidney, Prostrate and Bladder removed with stage 4 cancer. Urostomy
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Rerun
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« Reply #9 on: March 10, 2010, 06:08:00 AM » |
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Espie, I'm go glad you found us. You will find much information on this site. I can imagine that you are scared to watch you son to go through treatment. You need to learn all you can about this process so your fears are at ease. Best of luck and God Bless~ Rerun, Moderator |
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krfm2003
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carebear
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« Reply #10 on: March 10, 2010, 07:59:03 AM » |
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Espie, I replied to your comment on my thread.  Karen |
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Mommy to two incredible little boys, one that just happened to need a kidney at 18 months. It's been a ride - but it's been worth every minute of it. Have you signed your donor card? Matthew's caringbride site: http://www.caringbridge.org/visit/fightingmatthew |
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Lisa
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« Reply #11 on: March 11, 2010, 12:20:56 PM » |
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espie clavecilla, Welcome...you will find great support and care here!! |
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Lisa
born 1966 with PKD
ESRD 1987
PD started 1987
1st hemo 1989 (permacaths, grafts and fistulas)
1st Transplant 1990
Transplant failed 1994
Hemo 1994 (permacaths, grafts and fistulas)
2nd Transplant 1995
Hemo 2010 (permacath hopefully merging into PD)
PD training 3/16/10
CAPD...the CCPD until present
...waiting to go on "the list"
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Romona
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« Reply #12 on: March 11, 2010, 06:36:39 PM » |
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Your son is so cute.  Welcome. |
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espie clavecilla
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« Reply #13 on: March 12, 2010, 04:38:32 PM » |
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Hello again guys....
I'm very much in need now... please send some posts regarding procedures on dialysis.
Ej and I went to his nephro yesterday, we really need to start his dialysis as soon as possible. He is advise to undergo hemodialysis instead of perithoneal because he has a vesicostomy.
Need all your support and prayers for until now we're not yet prepared emotionally and financially.
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