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Author Topic: Newb in the house!  (Read 4227 times)
ProStreetCamaro
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« on: October 16, 2014, 01:29:43 PM »
Quick intro here. Wife has been on nxstage for 2 years 4 evenings a week. Just thought I would join up and say hey and possibly be able to help somebody if I can. We have done it so much it is like clockwork at this point. That does not change the fact that it is starting to get old at this point but what is one to do but keep on chugging along? She has always had issues with weight and god bless her it certainly is not because of the way she eats (struggles to lose weight even at 800 calories a day) so needless to say she is struggling to try and drop weight to get on the list and also so they will test her and me and 4 of her friends and her sister. Hopkins is certain out of that many people somebody is likely to be a decent match.  Her kidney failure was VERY strange. It was caused by sarcoidosis which hopkins told us is extremely rare. What is even more strange is her kidneys still filter out most things except creatinine and phosphorus. She still goes to the bathroom like normal also. Her sak is 306 or else the other saks were making her potassium drop to far because her kidneys still process potassium. Anyway just dropped in to say hey!


Oh also I mentioned this site to Nancy her nurse and she said she was Epomans nurse in Seattle I think it was? She knew all about this place.
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Jean
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« Reply #1 on: October 16, 2014, 03:54:41 PM »
Welcome to IHD. We can always use some one who has some knowledge, even tho we have a LOT of them. Read the posts and enjoy and post if you want to.
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One day at a time, thats all I can do.
cassandra
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When all else fails run in circles, shout loudly
« Reply #2 on: October 16, 2014, 04:33:21 PM »
Welcome to the site ProStreetCamaro

      :welcomesign;


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
Rerun
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Going through life tied to a chair!
« Reply #3 on: October 17, 2014, 07:28:52 AM »
Hi, so glad you joined!  That is weird to have to go through dialysis when the kidney is still "mostly" working.  Hope she gets a transplant soon.

Reurn, Admin   :welcomesign;
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ProStreetCamaro
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« Reply #4 on: October 17, 2014, 07:53:17 PM »
Quote from: Rerun on October 17, 2014, 07:28:52 AM
Hi, so glad you joined!  That is weird to have to go through dialysis when the kidney is still "mostly" working.  Hope she gets a transplant soon.

Reurn, Admin   :welcomesign;

Thanks for the warm welcome folks! Her kidneys are pretty strange. I think Hopkins might have done a case study of her. They mentioned it but im not sure if they did or not.
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PrimeTimer
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« Reply #5 on: October 17, 2014, 10:24:38 PM »
 :welcomesign; Welcome to ihd, ProStreetCamaro! My husband uses the new NxStage System One "S" Cycler. I'm his care-partner and do all the setup and run the machine. Also partake in some of the cursing, particularly during Red Alarms. We've only been doing home-hemo since December but learning a heck of a lot from this site. Your name makes me feel nostalgic, almost brings tears to my eyes.
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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.
ProStreetCamaro
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« Reply #6 on: October 20, 2014, 07:25:44 PM »
Quote from: PrimeTimer on October 17, 2014, 10:24:38 PM
:welcomesign; Welcome to ihd, ProStreetCamaro! My husband uses the new NxStage System One "S" Cycler. I'm his care-partner and do all the setup and run the machine. Also partake in some of the cursing, particularly during Red Alarms. We've only been doing home-hemo since December but learning a heck of a lot from this site. Your name makes me feel nostalgic, almost brings tears to my eyes.


It has become very rare for us to get any alarms. The more you do it the smoother and more routine it becomes. I get home between 1 and 2pm and setup the machine right away and let it run until she gets home and is ready to start. We try to start by 6 at the latest and that puts us getting done around 9pm (her treatment lasts 2 and a half hours). By letting the cycler run for a few hours makes the snap and tap much easier. It usually only takes one round to get it cleared of air bubbles.

Ahhhh and here is the reason for my name




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PrimeTimer
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« Reply #7 on: October 20, 2014, 07:31:20 PM »
Oh boy...THE CAMARO!   :'(
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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.
Michael Murphy
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« Reply #8 on: October 21, 2014, 07:09:05 AM »
Love the car  :bow;  I am also blessed with a partial working set of kidneys that eliminate all the fluid and most of all the phosphorus and potassium I eat. 
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ProStreetCamaro
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« Reply #9 on: October 21, 2014, 11:30:10 AM »
Quote from: Michael Murphy on October 21, 2014, 07:09:05 AM
Love the car  :bow;  I am also blessed with a partial working set of kidneys that eliminate all the fluid and most of all the phosphorus and potassium I eat.

You are lucky like my wife. It sure makes the treatments that much easier and less hard on the body.



You guys might like this video. I used my action cam and recorded a short cruise down to a local cruise in.


http://youtu.be/6eyMV0D96og?t=47s
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