kapodi
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« on: October 26, 2008, 06:21:06 PM » |
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Hi, my name is Jodi. I am mom to five children, one of whom has FSGS. Her name is Grace and she is 7 years old. She was diagnosed when she was 2 1/2 and it has been a rollercoaster ride ever since. She went to ESRD in January 2008 after an episode of acute CHF. Grace was on HD since January and in August she received a deceased donor kidney. For the first 12 hours it was a dream come true. After that it began to shut down and we descended into hell for several weeks. On September 17th the kidney was removed. It was completely destroyed by the disease. October 10th we came home and started PD. We are adjusting but it has been really hard. I am exhausted. Grace is a trooper and she looks great so no one really knows what it is like with dressing changes every other day with a screaming kid and dialysis for 12 hours every night...let alone dealing with the devastation of what we went through. I'm looking forward to some emotional encouragement as I try to meet the needs of my seemingly very needy family without losing my sanity!!!
Jodi
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paris
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« Reply #1 on: October 26, 2008, 07:14:05 PM » |
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Dear Jodi, Welcome and we are glad you joined us. I have tears just thinking about your sweet Grace. No child just endure what she has gone through. There are so much support here and I hope we can help you in some way. We are here if you just need a place to vent and cry. You have a lot going on.  Looking forward to learning more about you and those 5 kids. What ages are they and what are their names? Welcome to our family. paris, Moderator |
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« Last Edit: October 26, 2008, 07:18:48 PM by paris »
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 It's not what you gather, but what you scatter that tells what kind of life you have lived. |
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lola
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« Reply #2 on: October 26, 2008, 07:21:13 PM » |
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Welcome My daughter Dani is 6 and has active Alports, she is still hopefully very far away from Dialysis but the support here is AMAZING!!!! My husband also has Alports and they have gotten me through some of the worst days of my life.  |
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Zach
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« Reply #3 on: October 26, 2008, 07:28:14 PM » |
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Welcome to our community!  |
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ No transplant. Not yet, anyway. Only decided to be listed on 11/9/06. Inactive at the moment.  I make films. Just the facts: 70.0 kgs. (about 154 lbs.) Treatment: Tue-Thur-Sat 5.5 hours, 2x/wk, 6 hours, 1x/wk Dialysate flow (Qd)=600; Blood pump speed(Qb)=315 Fresenius Optiflux-180 filter--without reuse Fresenius 2008T dialysis machine My KDOQI Nutrition (+/ -): 2,450 Calories, 84 grams Protein/day. "Living a life, not an apology." |
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monrein
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« Reply #4 on: October 26, 2008, 08:56:03 PM » |
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 to you Jodi and hello to Grace too. I look forward to getting to know you here.
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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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RichardMEL
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« Reply #5 on: October 26, 2008, 09:22:19 PM » |
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Hey Jodi, Nothing is more distressing than when a child has to deal with a disease like CKD. It's terribly heartbreaking for all they have to go through at a young age. Sounds like Gracie is a tough nut though and is hanging in there despite the ups and downs. You've obviously got a lot on your plate looking after your tribe and all. I hope we can help you help gracie more, and yourself... Welcome! |
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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!
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Bajanne
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« Reply #6 on: October 27, 2008, 12:11:45 AM » |
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Welcome to our community, Jodi! So sad to hear about the challenges facing Grace at this young age. But I am very proud of her, as you say she is a trooper - Amazing Grace! Let her know she now has lots of aunties and uncles all over the world (as far as Australia) sending her caring thoughts and prayers. Please continue to post and let us know how she (and you) is doing. And remember that when you need to vent, this is just the place. This is a very supportive site and we will be there with you for the long haul. Looking forward to hearing from you 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! |
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Joe Paul
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« Reply #7 on: October 27, 2008, 12:17:40 AM » |
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Welcome Jodi, 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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willieandwinnie
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« Reply #8 on: October 27, 2008, 04:28:25 AM » |
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Jodi. You have found a great place and we hope we can answer your questions and offer support for your sweet Grace and you. |
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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teverman
Newbie
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Posts: 11
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« Reply #9 on: October 27, 2008, 07:28:18 AM » |
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Jodi I am also new to the board and you will find the best information and support here. Tina
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devon
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« Reply #10 on: October 27, 2008, 07:39:13 AM » |
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Welcome Jodi!
I hope we can help you find the comfort you seek. Our hearts are with you.
-Devon
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paul.karen
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« Reply #11 on: October 27, 2008, 07:43:46 AM » |
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 Jodi. & Little Grace Well little grace has sure been threw the ringer at such a young tender age. As have you. The IHD family is full of great people who can help you with many of your questions and concerns. it is always so so sad when the young go through these tough times. You are all in my prayers..... P&K
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Curiosity killed the cat
Satisfaction brought it back
Operation for PD placement 7-14-09
Training for cycler 7-28-09
Started home dialysis using Baxter homechoice
8-7-09
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Razman
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« Reply #12 on: October 27, 2008, 09:34:15 AM » |
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As patients we sometimes forget about what it is like for others. I'm sure that you go through a lot and try to carry a lot of the burden for your daughter. You should be given awards. Please stay in touch. There are a lot of people here for information and support.
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graftgurl
Jr. Member
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Posts: 57
Does banging your head help one's memory?
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« Reply #14 on: October 28, 2008, 10:20:54 PM » |
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Oh, Jodi!  I want to just reach out to you and Grace and give you both big cyber hugs I have only been here for a few days, but already I have found the support of so many. I hope you can find what you need as well. You are in my thoughts and prayers Yvonne <333 |
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graftgurl
CKD in fall '03
leg graft July 9 '08 (2 days after my birthday)
began hemodialysis August 21 '08
petrified to apply for transplant b/c of other health issues
Type 1 diabetic for 37 years
single mother of teenage daughter
who was a 29 week preemie due to Mom's short-term
kidney failure and resulting in emergency c-section
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Romona
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« Reply #15 on: October 29, 2008, 01:44:43 PM » |
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Hi Jodi! Hi Grace!
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Ang
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« Reply #16 on: October 29, 2008, 09:11:16 PM » |
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jodi gracie
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live life to the full and you won't die wondering
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