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Author Topic: Hi, from New Zealand! :)  (Read 12702 times)
Chris
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« Reply #25 on: August 23, 2013, 05:51:42 PM »
Ok maybe an overly drunk frat boy with the way day is going!
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
AntNZ
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« Reply #26 on: August 23, 2013, 06:08:23 PM »
Lol - what do you mean by that, Chris?
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Cheers, Ant :)
Lexxtech18
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« Reply #27 on: August 23, 2013, 06:27:19 PM »
Wow! Its crazy how similar our stories our, AntNZ! I was born with heart problems and other kinds of problems that were repaired. Then at 2 years old they found my kidneys were bad. I had my first transplant at 7, also from my mom. It last til I was 17 (it was killed off by a medication that is known to be highly nephrotoxic). Was on hemodialysis for 5 years, had another transplant in 2010 and it lasted only 9 months. Now I've been back on HD for 3 years. Tried PD, didnt like it at all and my levels stayed high. :/
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
Sugarlump
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10 years on and off dialysis
« Reply #28 on: August 23, 2013, 09:50:11 PM »
Quote from: AntNZ on August 23, 2013, 03:13:50 PM
Hey Chris and Sugarlump,

Haha 90?? Really? Aww.

Sugarlump, you're still young :)  :flower;

In truth I never really grew up  :rofl;
I am still like a 6 year old at times!!!!
To me Old is a state of mind really... you are as young as you feel!
I have a better social life now than I did in my 20's!!!!
I am still a party animal at heart (kidney failure or no kidney failure)
So what's your social life like in NZ then Ant and how do you manage it around your dialysis?  :waving;
Logged
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 :)
AntNZ
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« Reply #29 on: August 24, 2013, 02:19:22 AM »
Hey Lexxtech18 and Sugarlump,

Aw Lexxtech18, that sounds so harrible to have to go through! I feel for you! Our stories are very similar - no child should have to deal with that, and yet, I think it's harder on the parents!
You say 'mom' so I'm guessing you're either British or American/Canadian? Please do correct me if I'm completely wrong! It's sad that your transplant could have lasted much longer had you not been given that nephrotoxic medication! I've been on dialysis for 5 years. The first 2 years I was on and off between PD and HD. I eventually got such a bad Peritonitis infection that they said my peritoneum was screwed and I wasn't ever allowed back on PD. I was gutted as I HATE needles. I had watch a few patients needle when I was first put on dialysis (acute) and I just didn't like it. Other than the Peritonitis, PD worked well for me. (Aside from people asking 'when was I due') hated that!

Sugarlump, it's good to hear you're still a child at heart. :) I feel so old sometimes that I forget I'm only 23. I've had so many experiences in my life that many don't ever have so I feel old. I don't think any young person should have to deal with numerous surgeries because the doctors don't listen to us. Or anyone for that matter. I think the surgeries have aged me :( I don't have a social life as I moved to Auckland from Christchurch when I was 18 and haven't managed to make many friends as I don't go out really. The nurses at hospital are, really, the only people I see regularly enough to have a 'friendship'. Infact, I had a Fistulogram yesterday and the nurses in Radiology know my partner and I so well that they offer him the food that is only for patients LOL! It does get shocking when a nurse you've never met, asks if I've ever had a Fistulogram before and my reply is 'Yes, I have 6 a year'... Doesn't sound a lot but that's a lot of pain to deal with lol.
It's awesome you don't let dialysis get to you and your social life - it's something I've been trying to do but dialysis always interferes or comes up and people are scared of what they don't know - unfortunately!
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Cheers, Ant :)
duncan reamhiar
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« Reply #30 on: August 24, 2013, 02:46:40 AM »
hi all.. had a question:

Quote
Wow! Its crazy how similar our stories our, AntNZ! I was born with heart problems and other kinds of problems that were repaired. Then at 2 years old they found my kidneys were bad. I had my first transplant at 7, also from my mom. It last til I was 17 (it was killed off by a medication that is known to be highly nephrotoxic). Was on hemodialysis for 5 years, had another transplant in 2010 and it lasted only 9 months. Now I've been back on HD for 3 years. Tried PD, didnt like it at all and my levels stayed high. :/


which med was it?... 've got a few heart probs.. have had diabetes since "96" which seems to be the main cause of the rest of my wonderful health... since i've been seeing a Neph.. they've taken me off several of my meds.. 9at one point i was taking 22 tablets a day on top of 160 units of insulin).. was wondering if it was possibly any of my meds that made my kidneys go south.. am quite pished at my PC as he should have taken me off some of these meds earlier instead of waiting for the Neph to do it.. i already have a fistula in place but am opting for PD and waiting for surg (sept 11) for my "tummy hose"...
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Nemo me impune lacessit

RESPECT

Duncan Reamhair
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« Reply #31 on: August 24, 2013, 04:02:14 PM »
Quote from: AntNZ on August 24, 2013, 02:19:22 AM
You say 'mom' so I'm guessing you're either British or American/Canadian?

*gasps* ... UKians don't say 'mom' unless they're from Birmingham! We say 'mum' or 'mummy'. 

 ;D

 :welcomesign; from (another forum member who resides in) England! Lovely to 'meet' you.

*huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
AntNZ
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« Reply #32 on: August 24, 2013, 06:24:31 PM »
Poppylicious - I'm so sorry! My partners brothers wife says 'Mom' so I thought it was a, mostly, British thing  :oops; So sorry!!
Good to learn that the British language is much like the Kiwi :)
Thanks for that correction - I will know now for later :)
Lovely to meet you too, Poppylicious :) :waving;
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Cheers, Ant :)
Chris
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« Reply #33 on: August 25, 2013, 04:09:03 AM »
Quote from: AntNZ on August 23, 2013, 06:08:23 PM
Lol - what do you mean by that, Chris?
Dizziness, can't stand or walk in hospital room without assistance. Darn bed alarm goes off if I do.
Logged
Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Sugarlump
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10 years on and off dialysis
« Reply #34 on: August 25, 2013, 06:56:13 AM »
Quote from: Poppylicious on August 24, 2013, 04:02:14 PM
Quote from: AntNZ on August 24, 2013, 02:19:22 AM
You say 'mom' so I'm guessing you're either British or American/Canadian?

*gasps* ... UKians don't say 'mom' unless they're from Birmingham! We say 'mum' or 'mummy'. 

 ;D

 :welcomesign; from (another forum member who resides in) England! Lovely to 'meet' you.

*huggles*

Or even Mother if we are very posh!!!!  :rofl;  :rofl;  :rofl;
Logged
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 :)
AntNZ
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Just Gotta Keep On Kepping On
« Reply #35 on: August 25, 2013, 01:55:45 PM »
Hey Chris,

Oh no, that must suck! Do they have a pressure alarm on the bed or something to let them know you've moved?

Hey Sugarlump,

We say Mother here too lol :) I use it in sarcasm.
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Cheers, Ant :)
Chris
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« Reply #36 on: August 25, 2013, 05:36:32 PM »
Yes, a pressure monitor is set to monitor what I do.
Logged
Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
AntNZ
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Just Gotta Keep On Kepping On
« Reply #37 on: August 25, 2013, 05:52:15 PM »
Hey Chris,

That sounds annoying! How do you manange?
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Cheers, Ant :)
RichardMEL
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« Reply #38 on: August 25, 2013, 10:16:31 PM »
SugarLump claims to be 6 but I would add 10 years to that.. definitely a cheeky teenanger there!!
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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!
AntNZ
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« Reply #39 on: August 25, 2013, 11:13:04 PM »
Bahahaha :) Could be true, too :D
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Cheers, Ant :)
RichardMEL
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« Reply #40 on: August 26, 2013, 05:11:34 AM »
Quote from: AntNZ on August 25, 2013, 11:13:04 PM
Bahahaha :) Could be true, too :D

Oh were your ears burning too?!! you have a "guilty as charged" look on your face!!

just kidding :)
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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!
Poppylicious
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« Reply #41 on: August 26, 2013, 10:29:18 AM »
Quote from: AntNZ on August 25, 2013, 01:55:45 PM
We say Mother here too lol :) I use it in sarcasm.

Me too, especially when I'm embarrassed by my 'Mother' and need to roll my eyes at something she's done/is doing!

And no worries ... I think NZ English is more like British English than American English.  Perhaps your bf's sister-in-law is from Birmingham where apparently it is quite common to say 'mom' (I think it's old English but I'm probably wrong) although I didn't know that till a couple of years ago.  It used to bug me when British folk refered to 'mom' instead of 'mum' until I discovered it was a regional variation.  Now I just have to grin and bear it.

 ;D < me, grinning and bearing it.
Logged
- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
Sugarlump
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10 years on and off dialysis
« Reply #42 on: August 26, 2013, 10:35:04 AM »
Quote from: RichardMEL on August 25, 2013, 10:16:31 PM
SugarLump claims to be 6 but I would add 10 years to that.. definitely a cheeky teenanger there!!

Oi!!!! I am an adult y'know  :cheer:
I'm just a party animal who doesn't take life too seriously if I can help it!!!  :waving;
Logged
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 :)
AntNZ
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Just Gotta Keep On Kepping On
« Reply #43 on: August 26, 2013, 02:22:46 PM »
Hey guys,

RichardMEL, my ears don't burn lol I'm too serious most of the time.

Poppylicious, that is really interesting. 'My' sister-in-law's FB says she's from Lichfield... Would that explain the 'Mom' thing? Hahaha you're like me, I only really use the 'mother' title if she embarrasses me enough! :)

Sugarlump, it's so awesome you can still act like a big kid :)
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Cheers, Ant :)
Sugarlump
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10 years on and off dialysis
« Reply #44 on: August 27, 2013, 12:22:47 AM »
Ant ... never let dialysis get the better of you
The trick (and I know it's not easy) is to make it fit round your life and not fit your life around dialysis... :beer1;
Sometimes this means you have to break a few rules and dangle on the edge (in moderation)
Sometimes you can't but make it work for you.
Adapt and evolve are my motto's ...
And never ever lose your sense of humour.  :rofl;  :rofl;  :rofl;
Remember it is your life and you are in charge  :2thumbsup; Take control. Enoy it. Live it!!!!!
Logged
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 :)
Lexxtech18
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Be good to yourself when nobody else will.
« Reply #45 on: August 27, 2013, 05:31:21 PM »
Hahaha yes I'm American. I say "mom" or "mommy" or "ma"! And the nephrotoxic medication was Amphotericin B, it's an anti fungal medication.
« Last Edit: August 27, 2013, 05:33:16 PM by Lexxtech18 » Logged
Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
RichardMEL
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« Reply #46 on: August 27, 2013, 07:07:29 PM »
Quote from: Sugarlump on August 27, 2013, 12:22:47 AM
Ant ... never let dialysis get the better of you
The trick (and I know it's not easy) is to make it fit round your life and not fit your life around dialysis... :beer1;
Sometimes this means you have to break a few rules and dangle on the edge (in moderation)
Sometimes you can't but make it work for you.
Adapt and evolve are my motto's ...
And never ever lose your sense of humour.  :rofl;  :rofl;  :rofl;
Remember it is your life and you are in charge  :2thumbsup; Take control. Enoy it. Live it!!!!!

Really sound advice from a young lady who knows from (alas) lots of experience.

You dod dialysis to live NOT live to do dialysis :)
Logged


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!
kclapham
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« Reply #47 on: August 27, 2013, 09:03:37 PM »
Quote from: Lexxtech18 on August 22, 2013, 06:46:25 PM
I'm 25! I feel so old!! lol I've been having kidney problems since 2 years old (most likely congenital), 2 transplants and going on 9 years of dialysis now. :) It's been quite an adventure. I feel like I have more life experience than most 60 year olds!

Hi Lexxtech18,

Just thought I would put my two cents in and say Hi. I actually know Ant as we live in the same city. I have been on dialysis for about 18 years (I am 33). I feel for you but its really nice to see younger people coming forward to tell their stories.

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AntNZ
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« Reply #48 on: August 28, 2013, 02:37:55 AM »
Hey kclapham - fancy seeing you here :D

Hey RichardMEL and Sugarlump,
Great advice - I will try to take that on board :)

Lexxtech18,

Anti-fungal medication caused a demise in your kidneys? That is horrible! Same reason, I think, we're told not to take Nurofen/Iburofen.
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Cheers, Ant :)
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