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Author Topic: It all changed on a Thursday morning…  (Read 1129 times)
CissyKay
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« on: December 15, 2015, 05:08:14 AM »

When my husband phoned me to tell me that he had collapsed in the parking lot of his workplace and couldn’t move due to crippling gout, I knew something was wrong – horribly wrong. He’d been feeling crap for months (years?), puking at night and every morning, blinding headaches, tiredness – in hindsight, every symptom one could possibly attribute to kidney failure.
By the time we got him to the doctors, the worst was confirmed: end stage renal failure. Not stage 3, or possibly 4, no diet and drugs to try and keep the ship afloat a while – as soon as we could get him to a major centre, he went straight into theatre to have a catheter inserted into his neck and dialysis started that same evening. The word ‘reeling’ doesn’t even come close.
It’s now a few weeks later and we’re battling to establish the return some sort of normality in our lives. Hubby goes for dialysis three times a week and I’m just trying to keep sane and the household afloat (and the kids’ hair from becoming dreadlocked – their general neglect has been a heartbreaker). I don’t have a terribly good support system (my own fault – I battle to ask for help) and at times (often!) it all seems too much.
Luckily I’m going on leave now and will hopefully regroup during the holidays. The kids, job, running around, paying bills, keeping track of diet and drugs, cooking, shopping, worrying, picking up dog poo – it becomes a bit much, doesn’t it?   

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SooMK
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« Reply #1 on: December 15, 2015, 05:32:07 AM »

I'm so sorry for the impact on your family that kidney disease has made. Even when you know it's coming it's a shock but when you are blindsided like this and are just trying to get a grip on your new reality--I can't imagine. Welcome to IHD. I hope this forum can begin to be part of your support system.
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
Darthvadar
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« Reply #2 on: December 15, 2015, 06:32:03 AM »

 :welcomesign; to our community...

Great to have you on board...

Come in and visit often... We'll be here for you....

Darth... Moderator...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
Vt Big Rig
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« Reply #3 on: December 15, 2015, 06:55:18 AM »

Welcome to our little family.......

I was lucky (?) enough to be able to plan for the disruption of my life with some warning I would need dialysis.  I am sorry it has had such a major impact on you all of a sudden.

Eventually and unfortunately it will become the new "normal" for you.

If you have questions or need support please ask. Many of the "family" on here have gone through the same journey and can help.

Good Luck
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
kickingandscreaming
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« Reply #4 on: December 15, 2015, 07:03:35 AM »

Welcome CissyKay.

I am somewhat new here myself, having recently been through a similar crash as your husband.  But I knew it was coming. Some day.  That helps some.  I had just been through 2 weeks of what I thought was the flu, but turned out to be pneumonia. One night I found my legs and feet swollen in a way I had never seen before. Fortunately, I was due to see my Nephrologist the next day for our regular appointment.  She took one look at me and my test results and sent me to the hospital for a neck catheter, to be treated for pneumonia and to begin hemodialysis. 

Overnight, my life was thrown into chaos. So I can relate to what you must be going through and I'm so sorry it is happening.  Three weeks later I am settling into a rhythm (one that I never wanted to be in) and living the brain- and soul-deadening (for me) life attached to a machine 3 days/wk.  It is a shock to the system, but as with all shock, it is time limited.  This too shall pass, and will be replaced with a new normal.  You have now entered the country of kidney disease and the sub-culture of people who must somehow make peace with this new reality.  I wish your family the blessing of adaptability.  There is a lot of support on this forum, especially for those of us who can't or won't ask for help.
Best to you.
Kicking
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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
Michael Murphy
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« Reply #5 on: December 15, 2015, 08:43:50 AM »

The bad thing about ESRD is it just doesn't effect the patient it strikes at the whole family.  Three days a week is draining on the patient and it impacts all of you.  As you care for your husband and children please take the time to care for yourself.  This disease sucks if you know it's coming.  It must be a kick in the groin to arrive witnout warning.  As time goes by it will be easier for your husband if he stays on hemo and has a fistula installed after it matures the sessions will become more effective.  The really good news is there are several lines of research involving cloning and artificial implantable kidneys which may make this easier.  When you have questions this place is wonderful for finding answers and support.  Good Luck
« Last Edit: December 15, 2015, 07:43:15 PM by Michael Murphy » Logged
Hootie
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« Reply #6 on: December 15, 2015, 10:04:44 AM »

Hubby will get care he needs in center for now. Best thing you can do is take of yourself. Only then can you deal with kids and support hubby. YOU are the most important one. Find a stress reliever in a positive way! You will be fine. We all have had to deal with the ESRD in some form. I would say it gets a little easier along the way. Never easy though.
First stages of dealing with the disease are the toughest. As others have said its a family disease as it affects all.
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
CissyKay
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« Reply #7 on: December 15, 2015, 10:54:58 AM »

Thank you, all. It's a huge relief to admit to the horror of life as we know it, destroyed. And people say the weirdest things, things they wouldn't say if he had cancer and was undergoing chemo, or had a heart attack and had a bypass. It's like kidney failure isn't really understood, but that might just be my neck of the woods? Not to mention my daughter: "So mommy, if daddy dies, can we get a new puppy?" Good thing there's always something to laugh about. Most of the time, anyway. Once again, a million thanks.
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Michael Murphy
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« Reply #8 on: December 15, 2015, 12:38:38 PM »

Every where I've been my dialysis becomes the out of sync focus when it comes up,  the one that makes me crazy is when I say I can't do something because I am going to dialysis then they say "oh, I am sorry". And I reply what for you did not give it to me.
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del
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del and willowtreewren meet

« Reply #9 on: December 15, 2015, 06:16:47 PM »

Welcome to the site CissyKay  :welcomesign;  You will find lots of support here. 
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Don't take your organs to heaven.  Heaven knows we need them here.
cassandra
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When all else fails run in circles, shout loudly

« Reply #10 on: December 16, 2015, 04:51:52 PM »

Welcome to the site CissyKay

    :welcomesign;

Stay strong, it'll get 'better' some day, 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
       still on waitinglist, still ok I think
Simon Dog
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« Reply #11 on: December 17, 2015, 07:24:28 AM »

ot to mention my daughter: "So mommy, if daddy dies, can we get a new puppy?"
Is this because you are an obstacle to getting a puppy now, or because the puppy would replace you in the family?
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CissyKay
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« Reply #12 on: December 19, 2015, 10:45:12 AM »

Haha, Simon Dog - no, we have 2 dogs and 2 cats already but my daughter wants more. The standard excuse is always that we don't have enough space - in her 7-year-old mind, with Daddy gone (heaven forbid) a lot of real estate will be freed up.
« Last Edit: December 19, 2015, 10:58:50 AM by CissyKay » Logged
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