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Jean
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« Reply #25 on: April 28, 2014, 01:19:47 PM » |
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On pins and needles waiting to hear what happened at the Drs. Wishing the very best for you.
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One day at a time, thats all I can do.
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Sugarlump
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« Reply #26 on: April 29, 2014, 12:04:41 PM » |
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In a funny way, the more I drink the more I pee ... so a lot less hassle over fluid restriction  |
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense  |
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kristina
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« Reply #27 on: May 01, 2014, 02:15:00 AM » |
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Hello Sugarlump,
Could it be that your kidneys are gradually picking up their function again?
I am asking because I seem to remember that you suffered from chronic glomerulonephritis before complete kidney failure set in?
(Please correct me if I am wrong?) ...
...Over the past 40 years I was told by many nephrologists that - medically speaking - there is not much known about chronic glomerulonephritis,
or how the disease proceeds with each patient ... because it is rare and there is no well known medically explainable pattern with chronic glomerulonephritis ...
... I was also told that - theoretically - my kidneys should have already "given up" their function in 1971 when I was found
in a coma with uraemia and total kidney failure ...
... and especially, after I was diagnosed with chronic proliferative glomerulonephritis in 1972...
... but my kidneys have not given up yet and are still functioning ... just about ...
I wonder now whether your kidneys had a long rest and now they are picking up again...
... despite being minutely small and almost shrivelled (like mine) ?
I wish you good luck and I do hope very much it gets better every day!
Best wishes and good luck from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
He was completion and fulfillment in itself, like a meteor which follows its own path.
- Robert Schumann -
... Oportet Vivere ...
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Sugarlump
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« Reply #28 on: May 02, 2014, 10:03:49 AM » |
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Hi Kristina I don't really know much about the various types of glomeronephritus (as the research is now developing now into the why's and how's) I was diagnosed at 23, during my first pregnancy when they discovered protein in my urine. It was just a name to me. I was well, and it didn't affect me in anyway except to make life insurance impossible to obtain! I lasted 20 years before my kidneys failed and also had 3 more children in this time. I was never offered any treatment to protect or improve my kidney function...which I understand they do try now. I have membraneous glomerulopephritus though I am not quite sure what this means. Both my native kidneys are shriveled and tiny and non functioning so I can't imagine one of them springing to life! But I do have two failed transplants from 2008 (nosedived at 3 months after CMV) (again shriveled and no evidence of blood flow)and 2010 (lasted a year fighting antibodies)... still palpable in my left abdomen. I am assuming that if there is an increase of function it has to be this one, but why no-one seems to be able to say. I kind of like the idea of a mini-miracle. Science does not have all the answers. But I am gaining 2-3 litres a week less fluid as well as feeling more mentally alert. Bloods on Wednesday ....  |
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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Hemodoc
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« Reply #29 on: May 03, 2014, 09:58:39 PM » |
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 You can't get any better than the unexpected benefit. Miracle, sure could be and I know who I would thank in the same situation. I hope it all continues well for you.
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Peter Laird, MD www.hemodoc.infoDiagnosed with IgA nephropathy 1998 Incenter Dialysis starting 2-1-2007 Self Care in Center from 4-15-2008 to 6-2-2009 Started Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L) All clinical and treatment related issues discussed on this forum are for informational purposes only. You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances. |
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Gerald Lively
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« Reply #30 on: May 03, 2014, 11:44:35 PM » |
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I have not experienced a transplant.
During July 2011 I was hallucinating and the Nephrologist said I was two weeks from death due to renal failure. The short version of this story is after eight months of dialysis I have a 40% kidney function recovery. I have regular blood tests at a cancer clinic (I also have cancer) and they show regular improvement. I was told that was rare.
If your kidneys are getting better, go with it. I might also say, my garden is greenest just outside the door.
Best wishes.
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo
Human hopes and human creeds
have their roots in human needs.
Eugene Fitch Ware
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Sugarlump
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« Reply #31 on: May 17, 2014, 04:40:35 AM » |
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Do we believe in miracles??? The jury is still out on that... but MY BLOOD TEST RESULTS !!!! Urea pre dialysis 11.7 post 2.9 (Previous ranges pre 15.5-23.4 post 5-7) Potassium pre 4.4 post 3.7 (Previous ranges pre 5.7-7.5 post same as corrected on dialysis) Phosphate pre 0.81 (Previous ranges 1.15-1.7) MOST TELLING Creatinine pre dialysis 562 post 197 !!!!! (Previous ranges pre 1195-842 and post 358-297) Despite having a mild heart attack 12 days ago, an hb of 9.5 yet I feel well. Put these results with my increased peeing and you begin to wonder. The docs say they want to see what the next set of figures look like first... but bear in mind I haven't been on any immunosuppressants for a year too!  WOW!!!!! |
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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Ninanna
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« Reply #32 on: May 17, 2014, 05:15:17 AM » |
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That is fantastic news sugar!!  |
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
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SooMK
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« Reply #33 on: May 17, 2014, 11:49:01 AM » |
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This is such a fascinating story. I am hoping for a miracle.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
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lainiepop
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« Reply #34 on: May 18, 2014, 12:08:00 PM » |
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Wonderful!  And yes l do Believe in miracles! |
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
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kristina
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« Reply #35 on: May 18, 2014, 12:17:55 PM » |
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Great news Sugar!
I keep my fingers crossed and do hope you continue to get better!
Best wishes and good luck from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
He was completion and fulfillment in itself, like a meteor which follows its own path.
- Robert Schumann -
... Oportet Vivere ...
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BobN
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« Reply #36 on: May 20, 2014, 04:08:49 PM » |
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No possible explanation here, but hope you just go with the flow.
So to speak.
Glad you're feeling better.
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www.bobnortham.comAuthor of The ABC's of the Big D: My Life on Dialysis Bob's Prescription for Living With Dialysis: Follow Your Recommended Diet and Especially Watch Your Potassium, Phosphorous, and Fluid. Stay Active - Find a Form of Exercise You Like and DO IT!! Laugh Every Chance You Get.
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cariad
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« Reply #37 on: May 21, 2014, 07:35:48 AM » |
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria
People have hope in me. - John Bul Dau, Sudanese Lost Boy
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Jean
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« Reply #38 on: May 25, 2014, 02:28:26 PM » |
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Just hope it keeps on getting better and better. I believe in miracles and did witness one. Hopefully you will be my second one.
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One day at a time, thats all I can do.
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RichardMEL
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« Reply #39 on: June 12, 2014, 08:49:16 PM » |
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Wow could be Sidney is waking up a bit and helping out.. that's great.
Danny wants to take partial credit for being in the same room as you for a few days, but I told him no.
let's hope this trend continues!!!
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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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Sugarlump
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« Reply #40 on: June 16, 2014, 11:02:06 AM » |
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Slowed down a lot when I was in hospital for two weeks but starting to pick up again. Just had a wonderful week away in deepest, darkest Somerset and feel great. Actually managed to do some walking and enjoy being out in the fresh air and sunshine. I feel fitter than i have for about two years so something somewhere is working, be it my kidney, Danny's input or a miracle.  |
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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kristina
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« Reply #41 on: June 16, 2014, 11:09:23 AM » |
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Great news that you feel fitter and managed to do some walking...
...and I wish you very good luck, Kristina.
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Logged
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
He was completion and fulfillment in itself, like a meteor which follows its own path.
- Robert Schumann -
... Oportet Vivere ...
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Sugarlump
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« Reply #42 on: August 15, 2014, 12:34:01 PM » |
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Sadly, the end of this tale is as suddenly as my urine output increased, it then stopped. Completely. And no-one is any the wiser why. (Because i have 4 kidneys, 2 native and 2 transplanted it is impossible to figure out which one started working again, then stopped) It was good while it lasted but now back to struggling with fluid restriction again... Who knows, it may wake up again  |
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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SooMK
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« Reply #43 on: August 15, 2014, 02:00:31 PM » |
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Rats! So sorry to hear this.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
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jeannea
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« Reply #44 on: August 15, 2014, 02:57:21 PM » |
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How confusing and disappointing. Sorry to hear that.
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lainiepop
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« Reply #45 on: August 16, 2014, 01:25:11 AM » |
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so sorry to hear that sugar xxx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
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