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Author Topic: Struggling!  (Read 1875 times)
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« on: August 26, 2016, 04:56:15 PM »

Hi how are you all? It's nice to know there are other partners out there looking for support and answers...I often struggle as I know I need to be strong and supportive for my partner as he is the one going through this disease however sometimes reality sinks in and it's hard to stay positive about what the future holds...recently we were told that pd isn't working and he may need to switch to hemo which he doesn't want to do we were told if his treatment doesn't start working he won't make it to May next year and of course due to poor health we are suspended on the transplant list....I sometimes find it difficult to stay positive as I don't really have a support network as he doesn't want his family to know how sick he is which I find difficult.
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When all else fails run in circles, shout loudly

« Reply #1 on: August 26, 2016, 05:32:30 PM »

Dear Kas I'm really sorry you find yourself in this situation now. I'm not the carer, and I know it's hard for my hubby. I don't think you have to be positive all the time. Sometimes I wish my hubby wasn't so positive, cos sometimes it just isn't. But he's there for me, and I hope I'm there for him, cos I know it's hard for him too.

Why doesn't your husband want his family to know how sick he is? Does he realise how much harder that makes it for you?
And what about your family? Can you maybe talk to them?
Are the any local Kidney patient Associations you could go to?

And than the switch to hemo. It's not the end of the world you know. Have you been to a clinic or someone on home hemo to see how people are doing on that?
I've been doing HD in-center for 16 and home hemo for 4 years, too many ops, and way too much life in hosp, but I'm glad to be alive.

I hope you get some more practical support/advice from some of the lovely people on the site soon.

Lots of love, luck and strength, 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
Blake nighsonger
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« Reply #2 on: August 26, 2016, 08:00:24 PM »

 thank you.........------- People in A.A. have get together like this site to help stay(Sober ...well balanced).They also have Alanon for people who care or love them~~parents, wives,etc., for drunks. Wish this disease only effected the patient , but like that one it can have a rippal effect .  So glad  this site sopports the caregiver. So similar is this approach of one  care giver helping the other. on day at a time.  See you made my realize to give A hug more often . thanks        ,,,,
« Last Edit: December 20, 2016, 07:40:47 PM by Blake nighsonger » Logged
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« Reply #3 on: September 01, 2016, 02:26:22 PM »

When my father got cancer, he also didn't want to tell anyone about his illness or the (not good) prognosis. It does make it so difficult at times. When it finally got to the point he couldn't cover it up anymore and actually started telling people, almost everyone had it figured out anyway. It's hard to keep something like that a complete secret.

I've also done hemo, and it's really not too horrid - mostly tedious and repetitive. I wouldn't sign up for it as a hobby, but dang if I didn't start to feel a lot better after a few sessions and my levels started to get back to almost normal.

surprise kidney failure - oct. 2015
emergency hemo - oct. 2015
switched to pd - dec. 2015
transplant list - apr. 2016
Michael Murphy
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« Reply #4 on: September 01, 2016, 03:57:27 PM »

The thing about hemo is that it ain't that bad but it's a every other day sentence to in my case 4.4 hours of tedious boredom.  Some times I feel a little washed out afterwards but most of the time I am fine after a session.  I survive because of my iPad, books, movies, games, and Internet access helps kill the time.but the key part is when I am done I feel better.  Every one hates dialysis, but I love the life it gives me.  I am content with my life on hemo I love swimming in the lake during the summer.
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