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Author Topic: THIS is how you remind me of what I really am...  (Read 13819 times)
carla13
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« Reply #50 on: April 19, 2011, 12:31:05 AM »

Hey Sugarlump,

Just read this thread, hope things work out for you, so worrying when things don't go the way you want them to...

Noticed you were in the UK, whereabouts where you transplanted?

Hugs x

Carla
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Sugarlump
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10 years on and off dialysis

« Reply #51 on: April 19, 2011, 12:56:13 AM »

East Anglia that flat place!!!
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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 :)
carla13
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« Reply #52 on: April 19, 2011, 01:15:15 AM »

Hey,

East Anglia huh? England's a**e? Sorry, couldn't resist, I'm from the North West, which has areas that SHOULD be referred to as England's A**e!! :rofl;

Keep us updated on your progress!

hugs,

carla
x
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Poppylicious
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WWW
« Reply #53 on: April 19, 2011, 03:00:33 AM »

Awww, Sugar.  Many, many *huggles* for you and Sidney. 
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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.
Sugarlump
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10 years on and off dialysis

« Reply #54 on: April 19, 2011, 03:09:35 AM »

Thanks Pops not over yet but wish it could have been better news. I nearly fell asleep at the wheel on A14 yesterday morning, following behind a lorry and started to nod off in boredom...that scared the f*** out of me ( never mind the biopsy) falling asleep behind the wheeel at 70 miles an hour is never a good idea!
Miracles do still happen (in Hong Kong x)  ::)
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 :)
Brightsky69
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« Reply #55 on: April 19, 2011, 12:01:45 PM »

Sugar - I hope things improve tremendously for your kidney.  :pray;
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
Sugarlump
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10 years on and off dialysis

« Reply #56 on: April 26, 2011, 12:24:44 AM »

I cant go on anymore
The steroids have made me totally lloopy
All my new friends hate me
Just want to lie down and get it over forever
Sorry folks probably the strangest goodbye ever but can't go on
pretending anynore
Sugar xxx
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 :)
Chris
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« Reply #57 on: April 26, 2011, 12:42:58 AM »

Wish I had some advic other than hang in there it will get better, but that's over used. Call doctor and let them know what is going on, this does not sound good. It is not the normal you, so a dosage change or something maybe neded or eliminated. You can contact me if you want, I'm up most of the time
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?
Poppylicious
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« Reply #58 on: April 26, 2011, 07:42:14 AM »

I hope you've taken Chris's advice and contacted the doc.  I can't offer you anything but *huggles* at the moment, but I'm thinking of you. 

 :flower;
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.
Brightsky69
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« Reply #59 on: April 26, 2011, 04:30:01 PM »

 :'(  Dont give up.
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
Sugarlump
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10 years on and off dialysis

« Reply #60 on: April 27, 2011, 05:57:08 AM »

Thanks for your best wishes.
The doc did come out to me and has took one of my tablets off the list as the culprit but I despair of all these drugs fighting each other.
I lived to see another dawn though didn't sleep last night except few hours of daylight. Now being hassled to have an angiogram to look at renal artery to transplanted kidney which has significantly narrowed.
Me? I just want to pack my bags and run ...Australia...Hong Kong...California...Chicago...Colorado falls to name but a few... and never stop
running

Such a lonely life being a transplant patient... :'(
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 :)
Chris
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« Reply #61 on: April 27, 2011, 09:45:07 PM »

Take a ruler aand draw a straight line on either side to see where you might go. As for the look n see of the renal artery, I would have that done unless you are eager to go on dialysis. Hang in there, take one day at a time and soon it will be a month, then a year.
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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Posts: 2160


10 years on and off dialysis

« Reply #62 on: April 28, 2011, 12:12:30 AM »

Thanks Chris its easy to get overwhelmed by sense of panic ....hold my hand for a moment  :cuddle;
Thats what I need Thanks x
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 :)
Des
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« Reply #63 on: April 28, 2011, 02:18:16 AM »

Hi,

I have been so wrapped up with my own problems that I have missed this thread - I just want to say that I know "hang in there" is not really a chear to live by but what else can we do but just go on day by day?

I am thinking of you and I hope that you can get all of this resolved SOONER than later.

Just wanted to let you know that I know what you are going through ( at least a little)  :grouphug;

 :flower;
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Sugarlump
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10 years on and off dialysis

« Reply #64 on: April 28, 2011, 10:42:52 AM »

Thanks Des
Testing me more than i ever thought i could be tested right now.
But hanging on for grim death
Really worried about angiogram 2 people have told me about dangerous side effects that i may have heart attack first.
i am really big coward  :embarassed:
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 :)
RichardMEL
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« Reply #65 on: April 28, 2011, 12:58:05 PM »

i'm  a  big  coward  too! If  the  procedure  is  needed  to  help  you  overall  then    you  need  it.  as  or  side  effects  they  affec  everyone  differently  or  not  at  ll.  just  look  at  how  everyone  has  different  responses  to    preds.
Remember  you  are  at  a  low  point  now  for  several  reasons and  that  will  add  to  your  anxiety.  Be  heartened  that  you  have  come  this  far  shows  you  have  much  more  strength  than  you  give  yourself  credit  for.
Things  will  improve!
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!
albiecl
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« Reply #66 on: April 28, 2011, 05:03:13 PM »

Best of luck to you Sugarlump, I'm in the UK too so I'm sending you as many positive thoughts as I can from London.  Sounds like it has been a very difficult time for you.  Hope everything works out in the end x  :grouphug;
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Sugarlump
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10 years on and off dialysis

« Reply #67 on: April 29, 2011, 03:19:35 AM »

i'm  a  big  coward  too! If  the  procedure  is  needed  to  help  you  overall  then    you  need  it.  as  or  side  effects  they  affec  everyone  differently  or  not  at  ll.  just  look  at  how  everyone  has  different  responses  to    preds.
Remember  you  are  at  a  low  point  now  for  several  reasons and  that  will  add  to  your  anxiety.  Be  heartened  that  you  have  come  this  far  shows  you  have  much  more  strength  than  you  give  yourself  credit  for.
Things  will  improve!
Thanks Rich I have Tiffany and Leila with me today which is helping me stay in touch with reality and keeping me sane.
Hope you are doing ok too and that the high dose preds aren't making you hyper I had them on Day5 post transplant, made me
shaky. Can't be that bad if your flirting with the patients/nurses :)
Keep me posted.
Sugar x
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 :)
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #68 on: May 13, 2011, 03:30:08 PM »

sugar girl thinking of you and holding your hand!!!
 how are things?
xo,
R
Logged

Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Sugarlump
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10 years on and off dialysis

« Reply #69 on: May 14, 2011, 05:01:47 AM »

Feel very disassociated with the whole thing right now ... as if its happening to someone else and that ignoring it might make it go away...
I know the truth is it won't but need time to deal with all the issues ... Need feeling as lively these days perhaps I should up the steroids again.
My dancing with the hoover days are well and truly over!
 :bandance;  :bandance;  :bandance;  :bandance;  :bandance;  :bandance;


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 :)
boswife
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Posts: 2644


us and fam easter 2013

« Reply #70 on: May 14, 2011, 07:27:52 AM »

It's good to see you sugar  :grouphug;  Are things heading somewhere good yet?  :pray;  I wanna see you happy Sugarlump...wishing you wellness!  :pray;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Chris
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« Reply #71 on: May 14, 2011, 02:35:51 PM »

So your the one on YouTube dancing with the vaccum cleaner! :sarcasm; :rofl; :rofl; :rofl; :rofl;
 
Hope you feel better soon.
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?
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