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Jackie T

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« on: September 15, 2018, 01:20:35 PM »

I’m the caregiver for my husband who just started dialysis 8 months ago. He was diagnosed with kidney disease 14 yrs ago, but with a low sodium diet and being in good overall health his kidney held out 14 yrs before it decline to the point where he needed dialysis. He does HHD, he works full time so it is more fitting with his schedule. It was rough starting out with dialysis, his body went through an adjustment period so he was getting severe gout attacks after each treatment. I’m glad to say that after about 2 months, the gout went away and all was better. He is on the waitlist for a transplant so we are coping with dialysis until that day come. I’m so glad I found this forum, I read so many posts on here that have invaluable information with trying to understand what is going on when you’re on dialysis. This entire ordeal no doubt is an emotional roller coaster ride not for the patient but for the caregiver as well. It was so so overwhelming at first, but we took it day by day and it got better where we are now adjusted to our new normal. Thank you for accepting me.


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PrimeTimer

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Re: Newbie

« Reply #1 on: September 15, 2018, 04:15:31 PM »

Welcome to ihd! Sounds like you are off to a good start. I did home-hemo for my husband. He goes to the center now. He works fulltime so can understand about the convenience of doing dialysis at home on your own time. Luckily his boss accommodates his dialysis schedule. If you don't know already you can probably ask your clinic for a break (respite care) whenever you need it. My advice; use respite time to take care of yourself.


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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.

kickingandscreaming

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Re: Newbie

« Reply #2 on: September 16, 2018, 04:39:52 AM »


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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16

Paul

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That's another fine TARDIS you got me into Stanley

Re: Newbie

« Reply #3 on: September 16, 2018, 04:54:13 AM »

Hello Jackie. Welcome to the site.


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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!

kristina

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Re: Newbie

« Reply #4 on: September 16, 2018, 09:17:46 AM »

Hello Jackie and welcome to IHD and you are quite right, it is a roller-coaster-ride for the caregiver as well. Since my husband looks after me, I have often noticed that he worries much more about my situation on dialysis than I do and I feel so sorry and often wish I could change the situation and make life better for him ...
Welcome again and best wishes from Kristina.


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Bach was no pioneer; his style was not influenced by any past or contemporary century.
He was completion and fulfillment in itself, like a meteor which follows its own path.
- Robert Schumann -

... Oportet Vivere ...

cassandra

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When all else fails run in circles, shout loudly

Re: Newbie

« Reply #5 on: September 16, 2018, 12:36:54 PM »

Welcome to the site Jackie

Take care, Cas


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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
2020 start Gambro AK96

still on waitinglist, still ok I think

MooseMom

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Re: Newbie

« Reply #6 on: September 16, 2018, 03:40:33 PM »

Welcome!

Just so you know, PrimeTimer is one of our caregivers who has given so much good advice and support to other "newbie" caregivers, so look out for her posts!


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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."

Charlie B53

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Re: Newbie

« Reply #7 on: September 16, 2018, 08:35:54 PM »

Welcome to IHD!

We have a number of 'Caregiver' members that make very valid points that us 'Patients' don't think of from our end of the needle.

All Caregivers are Blessed for their willingness to step up and take care of their Family member.


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Jean

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Re: Newbie

« Reply #8 on: September 16, 2018, 10:25:54 PM »

Welcome to IHD Jackie. You will find a great group of people, both caregivers and patients. Be sure to take care of yourself, so you dont get burned out. For a good laugh, and to relax, you can always come to our political group. ( Just kidding )


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One day at a time, thats all I can do.

justagirl2325

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Re: Newbie

« Reply #9 on: September 17, 2018, 07:28:29 AM »

Welcome Jackie, I too was a caregiver for my husband who did HHD while we both worked full time for 3.5 years. He's now transplanted but my memories of the stress/worry/lack of sleep are still fresh.


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Jackie T

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Re: Newbie

« Reply #10 on: September 18, 2018, 09:15:23 PM »

Hello everyone, thank you so much for the warm welcome. I'm truly grateful to have found IHD, my second family. So glad to know that I can come here for answers, seek advice and share my emotions when things get tough. I'm still learning to navigate around this site so my post might end up in the wrong place.


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