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Author Topic: Another one bites the dust!  (Read 2718 times)
Donna360
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« on: December 26, 2010, 06:40:48 AM »
Hi everyone.

Well where do I start? I've been t1 diabetic for the last 30 years and I've known for the last 8 years that my kidneys are slowly divorcing me. At last count (8 weeks ago) my egfr was 23. Can't remember the other numbers but I am back at the neph clinic this Thursday. I've been told for the last 24 months that I would need D in the next 12 months and I've still managed to hold off. Having said that I do believe this time next year i will be on D as my numbers now change every time I go to the clinic.

I feel like crap now and tend to sleep at every available opportunity so God knows what i will be like when I actually need D. I am hoping to have heamodialysis at home and I have a dialysis nurse coming out to my home in a few days time. My favourite saying is "shit happens" and you will see me write this a lot. Having said that I do try and remember that things could be a lot worse.

I feel mentally prepared for it but I am sure I'm not really. To be honest, I just want to fast forward a couple of years so that i know i can cope with it. This forum is fantastic and looks like it covers everything I need to know.

I think you are all amazing and I wish you all the very best for the future xxx
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boswife
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us and fam easter 2013
« Reply #1 on: December 26, 2010, 06:50:53 AM »
Welcome  :welcomesign; and your right this is a fantastic site!!!  i am actually at this moment sitting outside in the dark at the D 'center'  where my hubby is dialysizing and where did i check into??.........to "ihatedialysis)  lol   WE are actually in training for home hemo with the NxStage machine, but because of the holidays, we are incenter today, with me doing his needles but them doing the D.  So anyway, it's really good to see you here and you will be so happy you found it.  It has given me more than i can believe in reasurance.  I do know what you mean about the fast foreward stuff too!!  i 'sort of' have that feeling about my training for nxStage.  I just want to know we'll cope..  So, welcome to the 'club' it's not so bad you'll see in time :-)
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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
MooseMom
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« Reply #2 on: December 26, 2010, 10:02:07 AM »
Hi Donna!  I pretty much know just how you feel.  I am pre-dialysis also.  Like you, I've looked seriously into home hemo with NxStage because I know for a fact that longer, slower and more frequent dialysis is far better for your overall health.  I have fsgs and have been watching my renal function slowly deteriorate.  My egfr was in the 20's for 5 years, but earlier this year, it dipped below 20 and has been declining a bit since.  I am on the transplant list; is this something you might consider?  I know exactly how you feel about wanting to fast forward time but at the same time wanting it to slow down so that D will never arise.  I figure that if other people can cope with NxStage then I can, too.  Welcome to IHD!  I know we can help each other out...people here are more than willing to give you advice, information and most of all, encouragement.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
looneytunes
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Wishin' I was Fishin'
« Reply #3 on: December 26, 2010, 12:14:19 PM »
Hello Donna, good to meet you and welcome to our gang.  This site is great for learning from other folks who "walk the walk" but also we try to support each other when the going gets tough.  Glad to have you here.   :welcomesign;
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"The key to being patient is having something to do in the meantime" AU
Joe Paul
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« Reply #4 on: December 26, 2010, 12:36:31 PM »
One thing about dialysis, is it is a slow journey to recovery. Take your time, as time flies faster then we realize some times. One day at a time for now, you will be fine, welcome to our forum, your friends here at I.H.D.
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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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #5 on: December 26, 2010, 06:03:26 PM »
welcome!

xo,
R
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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?
Chris
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WWW
« Reply #6 on: December 26, 2010, 09:07:54 PM »
Hi Donna :waving;
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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?
Jean
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« Reply #7 on: December 27, 2010, 01:05:44 AM »
   :welcomesign;  to IHD Donna, glad you found us.
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One day at a time, thats all I can do.
Donna360
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« Reply #8 on: December 27, 2010, 12:33:55 PM »
Thanks everyone. Transplant is definitely on the cards for me and my nephrologist has already said I am an ideal candidate for a joint kidney and pancreas transplant. Scary and exciting at the same time! The average waiting time for a kidney in the UK is 3 years but I'm not so sure about a double transplant. There are currently over 7000 people waiting for a kidney but less then 300 waiting for a joint kidney / pancreas.

Like I said in my first post - shit happens.
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murf
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« Reply #9 on: December 27, 2010, 01:31:33 PM »
Big welcome. Believe it or not, you will actually feel better with dialysis.
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Started Hemodialysis Anzac Day 2005
Patiently waiting for a transplant
Started PD New Year 2010
Taken off transpalnt list, Jan 211
Razman
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« Reply #10 on: December 27, 2010, 02:38:06 PM »
  it's great that you joined.  My  eGFR is  25  so I know what you are thinking about as you look forward at the years to come.  You've found a great site to get information and support from others that understand.   Please stay in touch.
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Desert Dancer
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« Reply #11 on: December 28, 2010, 08:13:14 AM »
Quote from: Donna360 on December 26, 2010, 06:40:48 AM
I feel like crap now and tend to sleep at every available opportunity so God knows what i will be like when I actually need D.

Donna, you'll probably feel 1,000 per cent better like many of us have...

Quote from: Donna360 on December 26, 2010, 06:40:48 AM
I am hoping to have heamodialysis at home and I have a dialysis nurse coming out to my home in a few days time.

... especially if you're doing home hemo.

 :welcomesign;
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
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