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Cordelia
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« Reply #25 on: February 11, 2011, 04:50:44 PM »

 :grouphug; :grouphug; to you
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
looneytunes
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Wishin' I was Fishin'

« Reply #26 on: February 13, 2011, 07:59:27 PM »

OLB...how are you holding up?  I'm thinking of you two.   :grouphug;
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"The key to being patient is having something to do in the meantime" AU
texasstyle
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« Reply #27 on: February 14, 2011, 10:46:07 AM »

I am not currently employed outside the house but at home, I am working ALL the time. It's soooo hard (like the others have said) being a caregiver. My best friend sometimes makes me remarks about me not working (which I am able to do) and sometimes I get a little hurt. If they only knew. His siter kinda gets it but his daughter doesn't. She's just not around enough to see how it is. She has children and I understand she is busy. It's all up to me. 3 days ago he injured his back and who is there w/ him? Me. We are there when they are sick, when they are weak, when they are cranky, when they don't feel like dialysis, when they need their special meals. We are there when (and if) they're congestive heart failure starts taking it's toll. We are there through all the medications, the medical bills, the paper work, the medical phone calls, everytime they are in ER, ICU, or regular hosp. We clean up when they throw up, when they have diarrahea, when they are occassionall dizzy after dialysis. We are there to pick up slack because they are not able to do exactly what they could before. We are there to constantly worry about them. e are there to check to see "if they breathing" at night or evrytime they're napping. And my friend thinks I sit around doing nothing all day lol. I know you feel alone but you're not. You may not have much support where you are but you have it here. It can be draining on the caregiver and you need to let a little loose too. Most importantly: take care of YOURSELF.
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caregiver to husband using in-center dialysis 4 years
billybags
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« Reply #28 on: February 14, 2011, 11:49:01 AM »

texasstyle, could not have said it better. Hubby has been in hospital with a heart attack since Friday, scared the shit out of me. So it has been stressful, tiring going backwards and forwards to hospital but the good thing is they have sorted him and I got him home to-day. Remember to say this to your self every morning, I get a laugh with it. Say GOOD MORNING, LET THE STRESS BEGIN and it frigging does. Thinking of you both.
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Poppylicious
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« Reply #29 on: February 14, 2011, 01:33:04 PM »

I am not currently employed outside the house but at home, I am working ALL the time. It's soooo hard (like the others have said) being a caregiver. My best friend sometimes makes me remarks about me not working (which I am able to do) and sometimes I get a little hurt. If they only knew. His siter kinda gets it but his daughter doesn't. She's just not around enough to see how it is. She has children and I understand she is busy. It's all up to me. 3 days ago he injured his back and who is there w/ him? Me. We are there when they are sick, when they are weak, when they are cranky, when they don't feel like dialysis, when they need their special meals. We are there when (and if) they're congestive heart failure starts taking it's toll. We are there through all the medications, the medical bills, the paper work, the medical phone calls, everytime they are in ER, ICU, or regular hosp. We clean up when they throw up, when they have diarrahea, when they are occassionall dizzy after dialysis. We are there to pick up slack because they are not able to do exactly what they could before. We are there to constantly worry about them. e are there to check to see "if they breathing" at night or evrytime they're napping. And my friend thinks I sit around doing nothing all day lol. I know you feel alone but you're not. You may not have much support where you are but you have it here. It can be draining on the caregiver and you need to let a little loose too. Most importantly: take care of YOURSELF.
Damn it tx! This made me cry.  I spend so much time insisting that I'm not a 'caregiver' that I don't think I truly realise that actually I am. 

*sigh*
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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.
RichardMEL
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« Reply #30 on: February 14, 2011, 04:34:17 PM »

Good post TS. Well written. It is not an easy lot to bear for the caregiver - specially when you also feel so helpless to do much more for the patient than what you already to, and probably also feel unappreciated half the time for what you DO do which often goes taken for granted or unnoticed.

We appreciate all that you, and all the other wonderful caregivers, do.
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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!
silverhead
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« Reply #31 on: February 14, 2011, 04:53:31 PM »

Texasstyle, I think I  Love you, Happy Valentines Day!.  I read your post and each and every item was exactly what I experienced with Sharon, especially stopping by her bed in the middle of the night to make sure she was still breathing......
« Last Edit: February 14, 2011, 04:54:41 PM by silverhead » Logged

Do not argue with an idiot. He will drag you down to his level and beat you with experience.
boswife
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us and fam easter 2013

« Reply #32 on: February 14, 2011, 07:02:06 PM »

Yes TS  you said it true... Dont think it could be more clear..  kinda in a loss for words, just want to knod and say 'yes'. 
And to   OLB, i send prayers for comfort. 
And to all of us, patients, and caregivers, i wish for peace, and content in what we do have.  whew,,,
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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
paris
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« Reply #33 on: February 14, 2011, 07:09:53 PM »

OLB, keeping you both in my thoughts and prayers.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
texasstyle
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« Reply #34 on: February 14, 2011, 08:06:11 PM »

See how NOT alone you are? I know it still feels like it probably. It's darn frustrating when there's no one to talk too either. VENT out your stuff!  It's not good to keep it in. One day at time is what we do.
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caregiver to husband using in-center dialysis 4 years
vcarmody
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« Reply #35 on: February 16, 2011, 02:37:00 PM »

Well said texasstyle.  OLB, I have been thinking about you everyday, wish there was something I could do to make it easier... were here to support you in anyway we can.   :grouphug;
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Caregiver to husband Chris, NxStage 11-2009
looneytunes
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Wishin' I was Fishin'

« Reply #36 on: February 16, 2011, 08:14:38 PM »

OLB...wondering how you both are....please let us hear from you.  Lots of prayers and good thoughts going out for you two.   :grouphug;
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"The key to being patient is having something to do in the meantime" AU
karrye
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If Life give you Limes, make lemonade instead.

« Reply #37 on: February 23, 2011, 05:06:40 AM »

 :grouphug;

Hang in there.  Believe me there is silver linings...you just have to wait until the clouds thin out a bit!  Here is a cute joke for you:

What do you call a burglar in armor?

A thief in a knight!  lol

Sorry, but I have to have some humor or I would go insane.

karrye
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Caregiver to husband:
Had surgery April 25, 2011 to bring fistula nearer to top of the skin.
Had staples removed from surgery on fistula May 3, 2011
Who started dialysis 1st week of December 2010.
Complete kidney failure November 30, 2010.
Surgery for 95% blockages in his right carotid and jugular February 22, 2011
Heart attack -- January 24, 2011
Chemotherapy -- September 2009 to April 2010
Colon Cancer -- April 2009
Colon removed --August 2009
Diagnosed with diabetes, Summer of 1996.
looneytunes
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Wishin' I was Fishin'

« Reply #38 on: February 25, 2011, 12:00:14 PM »

OLB...still thinking of you two and praying for you.   :grouphug;
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"The key to being patient is having something to do in the meantime" AU
looneytunes
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Wishin' I was Fishin'

« Reply #39 on: March 02, 2011, 06:17:23 PM »

OLB..haven't heard from you.  Hoping things are still ok there.   :pray;
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"The key to being patient is having something to do in the meantime" AU
ODAT
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Nala - Mom's Cat

« Reply #40 on: March 11, 2011, 01:17:36 PM »

There's is no way a person can say they understand how it is to be alone unless they have been for a length of time. I wish I could understand how my mom feels being alone so I can help do things and say things that might make it easier. She has always had people around. Six kids, plus babysitting, then working and grandkids. We all have our times to be with her. Mine is every Wednesday and every other Saturday. Of course, I see her more often due to parties and just wanting to see her.

I also know that mom sometimes gets complacent and wants to reach out and call someone, but is too tired. I've never been alone and when I find myself alone in my house, I know it doesn't compare to what someone who is truly alone feels because I know it won't last.

Being alone at any age, healthy or not, by your choice or not, is difficult. I know when my son went to PA for a job, he was alone for 3 months. He didn't know anyone and came home every weekend. I know he "grew into himself" during that time. You do have lots of time to think that's for sure.



 :cuddle;
« Last Edit: March 11, 2011, 01:21:43 PM by ODAT » Logged

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