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Author Topic: Where are they now?  (Read 34792 times)
MooseMom
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« Reply #25 on: April 12, 2013, 09:07:46 PM »

That's OK, Chris.  If she wants to contact us and tell us how she's doing, I'm sure she would do so.  It's enough for me to know that you have had some recent contact with her.
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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."
Mizar
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« Reply #26 on: April 13, 2013, 05:11:19 PM »

IHD Family. I was on this Site for Three Years, " Mizar "  I did not Post very much, but I checked the Boards Daily. They kept Me Grounded, in the Time that My Husband, was on Dialysis.  All I ever wanted to do, in the Time, I was on here, was to give, Positive and Strength Messages, to those, going Through, the same thing.  My Life, has Changed.  There is a Dialysis Clinic, at the end of My Street.  I Think of You All, when I pass it.
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boswife
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us and fam easter 2013

« Reply #27 on: April 13, 2013, 08:41:20 PM »

oh i so remember you and that punkens face :)  Im so glad you came on and i pray that all is well with you.  What a life huh..
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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
fearless
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« Reply #28 on: April 13, 2013, 11:26:16 PM »

hey Cariad, bless you for missing me!
I was doing home hemo from March 2012 until just last week.  It really took over my life and I didn't want to even think about dialysis when I wasn't actually on the machine, I kinda got away from IHD.  But I always think about you, MooseMom and a half dozen other people who have been absolutely invaluable to me in my coping with dialysis and trying to make it survivable.   I hope that you all are well and soldiering on as the mighty warriors that you are.

I admit that nowadays I only come in if i have a question or need help, while before i was trying to spend the time to share any help i could give for people on PD, since I had spent so many years on that therapy.

No matter how much or how little time I spend here, I am never far away in spirit, because even now, the only people who can really understand are other people who are or who have been on dialysis.

Everybody needs to feel like there's someone in the world who understands.

SO MUCH LOVE TO YOU ALL!!!  SO MUCH GRATITUDE TO YOU ALL!!!  and so many imaginings for a different world where we are all sitting together in a garden of fragrant and beautiful flowers, and our bodies are strong and we breathe so comfortably in  them, and we all laugh and eat delicious food together, and run through gorgeous fields of meadowsweet..... :guitar:
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amanda100wilson
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« Reply #29 on: April 14, 2013, 08:00:46 AM »

Fearless, are you still doing dialysis or have you had a transplant?  curious, because you say that you were doing home hemo until last week?
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
glitter
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« Reply #30 on: April 14, 2013, 08:39:35 AM »

I miss Boxman too, he has not been here for a long time I think.
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
MooseMom
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« Reply #31 on: April 14, 2013, 05:05:05 PM »

Fearless, are you still doing dialysis or have you had a transplant?  curious, because you say that you were doing home hemo until last week?

Fearless, I've been wondering about this, too!
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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."
MooseMom
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« Reply #32 on: April 14, 2013, 05:06:20 PM »

IHD Family. I was on this Site for Three Years, " Mizar "  I did not Post very much, but I checked the Boards Daily. They kept Me Grounded, in the Time that My Husband, was on Dialysis.  All I ever wanted to do, in the Time, I was on here, was to give, Positive and Strength Messages, to those, going Through, the same thing.  My Life, has Changed.  There is a Dialysis Clinic, at the end of My Street.  I Think of You All, when I pass it.

There you are, Mizar!  I hope you are doing well.  Please visit more often.  We miss you and that beautiful little boy's face!
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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."
fearless
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« Reply #33 on: April 15, 2013, 09:23:04 PM »

amanda, moosemom, I am still on dialysis.  9.5 years and NOT lovin' it.  I changed doctors and clinics AGAIN - so I could do in-clinic- nocturnal.  I have to drive an hour each way, but it's still better than daytime extended, and all the complications and problems I had to handle on my own (trying to make sure my care partner had as little to take on as possible: it was too much for me)  I'm trying to adjust to the nocturnal in-clinic, but I've had migraines and I certainly have NOT slept.  I will probably try to get some medication to help with that.  I only did a few nights of 8 hours, and then I had to switch to 6 just to get through it.  If I get some sleeping meds I might try 8 again, but for me also, since I'm totally dependent on the dialysis and drugs for all those pertinent body functions, I'd like to get stabilized for a while - since every time I change therapies it takes a while to figure out how everything needs to change til I find an equilibrium again.  I've been on the transplant list 3 years now.  (here's hopin')  In general, I've been kinda up and down emotionally since switching back to the clinic: I feel really good on my days off because I just totally detach from that whole scene.  On clinic days: I start to feel a little agitated as soon as I get up, and getting through the treatment is not easy physically, but so far the extra hours away from the whole dialysis thing, labs, supplies, etc.  is good.  I suspect the anemia will kick in soon because I'm losing more blood in the clinic machines and there's been no increase in epo (lag time from initial labs) but: one day at a time....and my doctor seems pretty cool: essential for tolerating dialysis.

you asked!   ;D
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Rerun
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Going through life tied to a chair!

« Reply #34 on: April 16, 2013, 06:23:56 AM »

You are not alone.... I'm not on Facebook.

    :cheer:
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MooseMom
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« Reply #35 on: April 16, 2013, 09:42:14 AM »

fearless, thanks a lot for giving us such a complete update!  I can really see how home dialysis can take over your life especially if you are keen to do everything on your own so as not to "burden" someone else if at all possible.  I wish more people had the option of in-clinic nocturnal; I wish you didn't have such a long drive both ways to access it, but I'm glad to hear that at least that option is open to you.  I can hear the relief in your "voice" that you don't have all of the bits and pieces that come with dialysis staring you in the face every day.  We need to balance our physical needs against our emotional needs, and I hope that nocturnal will work well for you.  It's great to hear that you feel so well on your days off!  That's a huge step in the right direction!

Let us know if you start using some sleep meds and if they work for you.

I can understand why you may have wanted to get away from IHD for a while.  I've done the same thing.  So, I'm really glad you've posted and have given us a bit of an update.  Thanks for doing that.
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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."
amanda100wilson
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« Reply #36 on: April 16, 2013, 04:45:54 PM »

thanks for the update.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
AnnieB
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« Reply #37 on: April 16, 2013, 06:34:04 PM »

I know I haven't been on the site in awhile....part because I was caught up in the process of moving, and part because I've been going through denial. However, I will be meeting with my neph this Friday. My labs keep wavering between stage 4 and stage 5. I started to check into the different facilities in the area, and will be going to an informational meeting at a Davita site that offers both PD and in-center nocturnal the first week in May. I've also begun to make arrangements with a surgeon to either have a fistula created or a catheter placed, depending on which way seems best. Last, I called the transplant center here - they told me that my neph would have to give me a referral, so I am going to ask him to do that for me when I see him so I can get started in the process of getting on the list. I was told it generally takes about 3 years for someone with my blood type (O) for that to come through.

I have been thinking about all of you, and wondering how everyone has been doing...

Anne   :waving;
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MooseMom
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« Reply #38 on: April 16, 2013, 08:01:10 PM »

Hey there, Anne!  It's nice to "see" you.

That time wavering between stages 4 and 5 is very scary.   :cuddle;  It's very brave of you to climb out of da Nile and start looking around at different facilities.  It took me years to screw up the courage to do that, so well done you.  It's great that you've found a place that offers the modalities that appeal to you.  I'll be very interested to know what your impressions are after your May meeting at Davita.

Sounds like you will have a lot of news to share with us in the upcoming months!
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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."
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #39 on: April 21, 2013, 04:22:41 PM »

Here's a cute video with our girl rsudock http://www.wkyc.com/life/programming/Live_on_Lakeside/article/292507/442/Josh-Womack-and-Rachel-Sudhakaran-Kidney-Walk-4113
That was a beautiful interview!  Thanks for sharing it!
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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! :grouphug;
boswife
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us and fam easter 2013

« Reply #40 on: April 21, 2013, 06:07:41 PM »

great video and thanks for sharing!!!  I miss her, shes the sweetest girl and so suportive.  all the best to her and her bro. 
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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
Sugarlump
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10 years on and off dialysis

« Reply #41 on: May 05, 2013, 05:01:34 PM »

Just thought I'd drop in and say hi (in case ANYONE remembers me???) I had a transplant December 2010 (same week as Rich) though it only lasted 12 months sadly.
Back on HD and have been quite poorly for last 6 months. But still around... Still giving em hell...
A big hi to those I used to talk to, hope you are well.
 :waving;  :waving;  :boxing;
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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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« Reply #42 on: May 05, 2013, 09:27:01 PM »

 :bump; tyefly??? Anyone? Anyone? Anyone?
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Chris
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WWW
« Reply #43 on: May 06, 2013, 01:06:40 AM »

 :waving;  Hi Sugarlump.
 
I'm not sure if I have tyefly on facebook, real names get confusing at times.
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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?
CebuShan
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« Reply #44 on: May 06, 2013, 05:36:51 AM »

How about Needlephobic? He used to call me once in a while but after my cell phone broke (still haven't replaced it!) I haven't heard anything.
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
MooseMom
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« Reply #45 on: May 06, 2013, 09:41:59 AM »

Just thought I'd drop in and say hi (in case ANYONE remembers me???) I had a transplant December 2010 (same week as Rich) though it only lasted 12 months sadly.
Back on HD and have been quite poorly for last 6 months. But still around... Still giving em hell...
A big hi to those I used to talk to, hope you are well.
 :waving;  :waving;  :boxing;

Of course I remember you!  Remember going to Denny's when you were visiting Chicago?

I'm really sorry to hear that your transplant didn't last longer.  Have you relisted?  Would you be interested in another transplant?

Thinking of you! :cuddle;
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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."
cariad
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What's past is prologue

« Reply #46 on: May 06, 2013, 10:44:16 AM »

Just thought I'd drop in and say hi (in case ANYONE remembers me???) I had a transplant December 2010 (same week as Rich) though it only lasted 12 months sadly.
Back on HD and have been quite poorly for last 6 months. But still around... Still giving em hell...
A big hi to those I used to talk to, hope you are well.
 :waving;  :waving;  :boxing;
I've been wondering where you were, darling! I just can never remember who's been on my mind when it comes down to posting here. It's like going to the library, can never recall what books I want to read. (I've started keeping lists for that.)

So sorry about the transplant! Glad to hear you're still keeping everyone around you on their toes! Try not to be such a stranger, come back and see us whenever the mood hits you.  :beer1;
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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
Sugarlump
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10 years on and off dialysis

« Reply #47 on: May 06, 2013, 11:41:06 AM »

Just thought I'd drop in and say hi (in case ANYONE remembers me???) I had a transplant December 2010 (same week as Rich) though it only lasted 12 months sadly.
Back on HD and have been quite poorly for last 6 months. But still around... Still giving em hell...
A big hi to those I used to talk to, hope you are well.
 :waving;  :waving;  :boxing;

Of course I remember you!  Remember going to Denny's when you were visiting Chicago?

I'm really sorry to hear that your transplant didn't last longer.  Have you relisted?  Would you be interested in another transplant?

Thinking of you! :cuddle;

Hello Moosemum xxx  :waving;
Course I remember meeting you in Dennys Diner when I visited Chicago. That was a great trip. Was so full of hope then for my transplant but sadly not meant to be.
Have been poorly for about a year now and not back on transplant list as yet. My sister got tested but she wasn't a close enough match (because of my antibody situation I need
a perfect or almost perfect match...
I struggle on with haemo but am considering another trip to USA maybe in October. I loved it so much, have to come back, maybe for Vegas ???
How's things with you?

 8)  8)  8)
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 :)
Sugarlump
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10 years on and off dialysis

« Reply #48 on: May 06, 2013, 11:42:46 AM »

Hi to Chris and Cariad  :waving; x
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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 :)
AnnieB
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Posts: 578


« Reply #49 on: May 06, 2013, 03:17:45 PM »

Well, I went to the Davita clinic and talked with their dietitian and PD nurse about options. After a lot of thought, I've decided to go with in-center nocturnal and have scheduled an app't with the vascular surgeon for the end of May to have him check out my veins for the best location - then will probably have the actual surgery in June. Do people have any thoughts about position for the access? It seems a lot of people have them on their wrist - but can you get them higher up so they won't be as noticeable?  ???
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