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Author Topic: Update  (Read 3041 times)
pianoflute2
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« on: April 20, 2015, 05:47:03 PM »

So we found out last week that Daniel is more likely to need a transplant. We find out preliminary results this Friday, and for sure two weeks from Friday. He really just wants to get the transplant and get it over with so he can move on with his life, but, from what I know, because he has an autoimmune disorder he has to be in remission for a year before he can have the surgery.
And I've been having a heck of a time. I was in the ER yesterday for a headache that still hasn't gone away, a migraine, I've tried everything up to Lortab which they gave me at the ER. But I can barely sleep or eat and it's making it almost impossible to take care of Daniel. Lucky for me he's doing more on his own everyday, and our mom is taking more time off work. Also I've got a surgery that I need, but I have to go back to Florida to get it, my brother lives in Utah. Well, thank you guys for all your support! I hope you're having a great day.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: May 01, 2015, 11:00:31 AM »




     :grouphug;


Stay strong, and if poss, make some time for yourself,

Love, 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
PaulBC
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« Reply #2 on: May 01, 2015, 11:31:48 AM »

I saw this update earlier and meant to respond. I will keep your brother Daniel in my thoughts. Nobody should have to go through his situation at all, but it's shocking to think of having to deal with it at that age (and being 15 is no picnic even if you're healthy if my memory serves me).

He has every right to be angry, confused, in denial, or any combination thereof. At the same time, I do hope that he develops a good set of coping mechanisms, because he's going to need them. We're 6 months into dialysis, 4 of them on PD. The transplant is probably inevitable, but it can wait for now. I don't know where we'd be it weren't for my iron girl daughter, handling it better than any of us.

What I would say to your brother is that now is the time to move on with his life. The transplant may be the best treatment, but it is not a cure, and nobody has a year to spend just waiting around.

I hope you are back home safely and getting the rest you need. Please keep us updated.
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