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joanna2007
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« Reply #1 on: March 14, 2007, 02:44:14 PM » |
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 Glad to have you join us. Joanna
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This is the day that the Lord has made, let us rejoice and be glad in it.
Joanna
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MyssAnne
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« Reply #2 on: March 14, 2007, 02:56:31 PM » |
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Welcome aboard, Lola! I'm sure you'll have tips for those of us who have not yet had a transplant! |
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Zach
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« Reply #3 on: March 14, 2007, 05:12:25 PM » |
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Great to have you here!  |
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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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kimcanada
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« Reply #4 on: March 14, 2007, 05:14:11 PM » |
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Lola I am glad that you found IHD this time around. Kim
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angela515
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« Reply #5 on: March 14, 2007, 05:22:01 PM » |
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
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Sluff
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« Reply #6 on: March 14, 2007, 05:50:21 PM » |
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Welcome to IHD Lola,
Welcome to IHD. Thanks for taking the time to introduce yourself. This website is intended to be your home away from home, offering advice when you need it, an occasional laugh and even more importantly an ear to listen to you when you ask questions, or just need to vent.
Unfortunately kidney disease and dialysis is the one common denominator that brings us all together.
Please enjoy the site and post often.
Sluff, Administrator
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Bajanne
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« Reply #7 on: March 14, 2007, 07:43:05 PM » |
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Welcome to our community. This community embraces everyone with any connection to renal failure. Please take your time and read our many posts. And keep posting. We need to know how things are working out for your husband. Here is a group hug from all of us.
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 #8 on: March 14, 2007, 10:18:34 PM » |
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Welcome lola, 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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kitkatz
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« Reply #9 on: March 14, 2007, 11:40:43 PM » |
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Welcome. There is a whole section on transplants and the adventure we are all having trying to get one. Come on in and sit a spell.
kitkatz, moderator
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lifenotonthelist.com Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5 Remember your present situation is not your final destination. Take it one day, one hour, one minute, one second at a time. "If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1 |
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Wattle
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« Reply #10 on: March 14, 2007, 11:46:15 PM » |
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Lola. I am glad you found us.
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
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rimbo74
Full Member
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Gender: 
Posts: 219
My older brother and me (I'm on the right)
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« Reply #11 on: March 15, 2007, 07:33:27 AM » |
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Hi Lola, like your husband, I have Alports. I'm currently waiting on the test results from my donors for my first kidney transplant. Welcome aboard.
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1986 - Diagnosed with Alport's Syndrome
10/29/06 - Told Kidneys failed
02/07-07/07 - PD Dialysis
07/31/07 - Kidney Transplant (donor was my older brother)
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MattyBoy100
Full Member
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Posts: 264
What's dialysis?
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« Reply #12 on: March 15, 2007, 08:04:14 AM » |
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Hi Lola,
I am 34 yrs old and was also diagnosed with Alports in June last year. I have been on hemo dialysis since then. This site has helped me learn a lot about my kidney failure and to take an interest in learning about what is happening to me. There are not many Alports syndrome sufferers out there. I have a hearing problem as well as the same gene affects both hearing and kidneys. I have to wear hearing aids since the age of 13.
Welcome to the site to you and your husband.
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SCOTLAND NO.1
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anja
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« Reply #13 on: March 15, 2007, 09:04:07 PM » |
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lola to the community~ from another Alport's person.
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kelliOR
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« Reply #14 on: March 15, 2007, 09:07:56 PM » |
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Hi Iola, nice to meet you. kelli
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Shoot for the Moon.....Even if you miss, you'll end up among the Stars ........
Denied PKD for years (Boy, was I good at it!)
Dragged kicking and screaming to dialysis (in center hemo)
Transplant from a friend March 24, 2006 at OHSU
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bolta72
Sr. Member
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Posts: 832
my best friend
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« Reply #15 on: March 16, 2007, 05:19:16 AM » |
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Welcome to the best site on the Web, best wishes to you and your husband |
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gotta do what I gotta do.. 2 yrs in ctr hemo
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lola
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« Reply #16 on: March 16, 2007, 12:00:10 PM » |
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Would love to hear from female Alport's pt's know how males are affected but our 4 year old daughter is starting to have syptoms. thanks  |
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carson
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« Reply #17 on: March 16, 2007, 12:02:50 PM » |
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Welcome, welcome! I'm new too. Everyone seems very nice and they're full of good info... |
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2009 infection treated with Vancomycin and had permacath replaced
2009 septic infection that wouldn't go away
2007 began Nocturnal Home Hemo with Permacath
1997 began Peritoneal Dialysis
1982 had cadaver transplant
1981 diagnosed with GN2 and began Peritoneal Dialysis
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rimbo74
Full Member
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Gender:
Posts: 219
My older brother and me (I'm on the right)
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« Reply #18 on: March 16, 2007, 12:05:52 PM » |
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Alports is a X-chromosone gene. I have a daughter and I was told she would only be a carrier of the disease. That her offspring will have a 50/50 chance male to have the disease, girls are less likely to be effected. Male - XY (X - from mother, Y - from father) Female - XX (X- from father, X - from mother) which ever X is the most healthiest would be the dominant X. Something like that....  |
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« Last Edit: March 16, 2007, 12:07:38 PM by rimbo74 »
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1986 - Diagnosed with Alport's Syndrome
10/29/06 - Told Kidneys failed
02/07-07/07 - PD Dialysis
07/31/07 - Kidney Transplant (donor was my older brother)
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lola
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« Reply #19 on: March 16, 2007, 01:50:42 PM » |
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that's what we were told we have two daughter's 7 & 4 our youngest has protein in her urine and scarring on her kidney's we have now been told she is a sufferer and will probley need transplant down the road.
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rimbo74
Full Member
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Gender:
Posts: 219
My older brother and me (I'm on the right)
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« Reply #20 on: March 16, 2007, 02:27:37 PM » |
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Has she gotten a biopsy done on her kidneys? How do you find out if there is scarring on the kidney?
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1986 - Diagnosed with Alport's Syndrome
10/29/06 - Told Kidneys failed
02/07-07/07 - PD Dialysis
07/31/07 - Kidney Transplant (donor was my older brother)
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jedimaster
Full Member
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Posts: 353
Stainboy is....alive!!!
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« Reply #21 on: March 16, 2007, 06:18:52 PM » |
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billoggblog
Full Member
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You Dialyse to Live....You Don't live to Dialyse!
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« Reply #22 on: March 16, 2007, 06:21:46 PM » |
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lola.
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Yesterday is History..........Tomorrow is Mystery..........
Today is a Gift...That's why they call it Present.
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lola
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« Reply #23 on: March 16, 2007, 07:04:04 PM » |
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we had ultrasound because she always said her stomach hurt and her urine looked like cranberryjuice, that's when we found out she also had protein in her urine so we tried meds but they didn't work. She's had 3-4? ultrsounds so far and they she a little more scarring each time, we see a neph at the u of m who researches Alport's and followed my husband and his 3 brothers when they were little.When ever she is sick she's in heat she say's (we have a female puppy!!)
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Sluff
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« Reply #24 on: March 16, 2007, 07:10:40 PM » |
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This section is for introductions. If you want to discuss a different topic you need to start a new topic on the subject in the proper section. If you have any questions feel free to ask a mod or admin.
Thanks,
Sluff, Administrator
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