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« on: June 12, 2019, 06:01:32 AM »

Hi everyone. I first want to thank you for sharing your knowledge and experiences. My husband started dialysis a year ago and is hoping for a transplant. I joined the group to gain insight on supporting him in his journey, which for him is emotionally taxing.  Also I joined for support for me to understand what he is feeling. Even though I am a nurse, I have learned the patient is the best source of information. I hope to learn from you what is the best way I can help him and to keep myself from going crazy. God bless you all and thank you. Mary
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« Reply #1 on: June 12, 2019, 06:58:06 AM »

Welcome to the group.

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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When all else fails run in circles, shout loudly

« Reply #2 on: June 12, 2019, 08:08:43 AM »

Welcome to the site Mary, I'm sure you'll find what you're looking for.

Keep taking care, Cas

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #3 on: June 13, 2019, 02:37:07 PM »

Hi Mary and Welcome to IHD!

We have a number of caregiver members here much for the same reason, to learn how to better support their loved one to manage treatment.

His diet and fluid control is critical to preventing excessive exhaustion and cramping from having to take off suck large volumes of water during treatments.

This is most likely the hardest leasson to learn as so many of us have such thirst it is very difficult to control.

For me, I use a Lifesaver, they really help stilulate saliva and wet my mouth and throat.  A single small ice cube can work for a while.  When I do give in and drink it is most often only a single mouthful of ice water, set the small glass down and get out of the kitchen.  Otherwise I am tempted to take another mouthful, and there are those time that I do.

Wet foods, soups and steamed veggies add up in the fluids rapidly.  Pretty much the same with med-rare meats.  There is a lot of water hidden in meats, and fish.  It all needs to be considered in our daily intake.

Smaller people these fluids add up quicker when you figure as a 5 of body weight.  I am 200 lbs, 3 liters are about the max I can allow to be taken off or my legs begin to cramp, and cramp again almost every 2 hours in my sleep.  Which makes me have to immediately get up and walk to make them relax so I can go back to bed, only to cramp within the next 2 hours asleep.  So you can see why I try so hard to stay well under a 3 Liter gain between treatments.

It ain't always so easy, but the tougher I am with myself the easier treatments are later.

Any questions or thoughts Please be sure to make more postingsd.

We are here for you Both!

Take Care,

Charlie B53
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« Reply #4 on: June 13, 2019, 06:20:49 PM »

Welcome, I am my husbands former care partner he was on dialysis 3.5 years but had a transplant 1.5 years ago.
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