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Author Topic: Spouse/Partner doing Home Hemo-Dialysis  (Read 2099 times)
motreasures
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« on: January 14, 2011, 12:47:02 AM »

Hi All!

I've been lurking for a while...thought I would join in on the conversations. 

I am the spouse of a wonderful man who has ESRD.  We do Home Hemo-Dialysis and I consisder myself to be his partner in keeping him as healthy as he can be so his quality of life is the best it can be.  We recently learned that he has a mass on his left kidney and the whole kidney needs to be removed.  It's scheduled for the beginning of February.  We won't know if the mass is cancerous until a few days after his kidney is removed.  Nor will we know if it has spread to other parts of his body until then.  We're hoping for the best case scenario; it's either benign or a cyst, then he remains on the transplant list.

I'm hoping to learn from other's experiences.

Mo
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MooseMom
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« Reply #1 on: January 14, 2011, 01:04:12 AM »

Mo, :cuddle; :cuddle;  I can't imagine the worry you two must be feeling.  Cancer on top of ESRD would be a difficult thing to cope with, and I am hoping that is not the final diagnosis.  Most growths are benign, so I have a lot of hope for you.  Please do let us know what happens, OK?

It's great that you are doing home hemo with your husband; it will keep him much healthier than if he was on inclinic hemo.  I know it must be hard work.  Once I start dialysis, my husband is going to train with me to do home hemo, too.  We know it will be a challenge but we take great comfort in hearing stories like yours of other couples who have managed it.  I really look forward to hearing more about your experiences.  For how long has your spouse been on dialysis?  Is he doing as well as you both hoped?

Welcome to IHD!  So very glad you've joined!
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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."
Poppylicious
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« Reply #2 on: January 14, 2011, 09:48:36 AM »

 :welcomesign; Mo!
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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.
Rerun
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Going through life tied to a chair!

« Reply #3 on: January 15, 2011, 05:10:30 AM »

Hi Mo and welcome to IHD.  I'll be praying that the mass is not cancerous.  I'm so glad you found us.  This site is great!!

Rerun, Moderator     :welcomesign;
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Desert Dancer
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« Reply #4 on: January 15, 2011, 06:00:45 AM »

Hi, Mo and  :welcomesign; to IHD! How are you and your husband liking home hemo?

Fingers crossed for you here that the mass is just a cyst!  :pray;
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
1sickbob
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« Reply #5 on: January 17, 2011, 05:40:52 AM »

Hi Mo...back in 1999 the doctors thought I had kidney cancer as all my tests came back as would someone with kidney cancer.  They then decided to wait, and my numbers got better.  A year later they once again were bad, and they thought they had missed their window of opportunity to get the kidney out before it spread.  I had the kidney removed, it looked nothing like a kidney when they got it out and there was a huge hematoma on it and everythign was benign.  But since it was not functioning any longer, they did the right thing to get rid of it.
My other kidney lasted 10 years after this as we watched it slowly deteriorate.  Thankful the time we did get however..now its COME ON TRANSPLANT!  hahh

Bob
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Waiting for the call...can't come soon enough!
Rerun
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Going through life tied to a chair!

« Reply #6 on: January 19, 2011, 12:44:31 PM »

 :bump;
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motreasures
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« Reply #7 on: January 26, 2011, 12:46:02 AM »

Hi All! 

I've been AWOL for a bit...life stuff and getting ready for my Hubbie's upcoming surgery.

Thanks so much for the welcomes!  It's great to come to a friendly place where people understand what we're going thru. 

Bob, thanks for the encouraging news.  We hope for the best but as you undoubtedly know, it's those dark moments when you worry about the worst...seeing your post help me get back on the hopeful track.  :thx;  Here's hoping you get a transplant soon!   :beer1;

Desert Dancer & MooseMom, we started home hemo this last September after 10 months of Darrell traveling over an hour away for treatments 3x a week.  We knew before he ever started dialysis that we wanted to do home hemo, but the closest clinic to offer the training is 2.5 hours away and they were just beginning so we had to wait for an opening to train as they were training one couple a month.  I must say, as the "care-giver," it's more work than I thought it would be initially.  However, I'm still glad we're doing it at home.  There are some adjustments to life as we knew it in terms of doing dialysis 6 days a week (though we probably do it closer to 5 days) versus the longer 3 days in clinic treatments.  Also, for us, it's still about 4 hours of total time from gathering supplies, priming, getting on the machine, then getting off treatment and waiting for his buttonholes to clot & cleanup.  I wouldn't change whether we did it at home or not...I just wish we weren't told it would be 2-2.5 hours.  I believe you can prepare yourself for anything as long as you have all the information.  Silly me. ::)

I wish I had known about this forum before we started...I think I would have been less panicky every time the alarm went off in the first three weeks of dialysis at home.  LOL   We are by no means complacent during the setup and treatment, but much more calm & confident in handling any issues/alarms that come up.  And if for some reason, the treatment seems to be jinxed with some issue after another...we've learned to do a rinse back and shut it down and start fresh the next day rather than get frustrated with each other and the machine.  There's so much more I could write, but my guess is that somewhere here, others have been very thorough in their feedback.  I'll be happy to add to the content.

Rerun, thanks for the prayers & bump  ;D

Hi Poppy!

I look forward to hanging out some, here.  And I'll definitely keep you posted. 

Have an awesome day, All!
Mo
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #8 on: January 26, 2011, 03:11:25 AM »

welcome Mo!!!!
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Cordelia
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« Reply #9 on: January 26, 2011, 06:43:54 AM »

Hello and  :welcomesign;
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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
rocker
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« Reply #10 on: January 26, 2011, 09:25:50 AM »

Lots of home hemo partners here...
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