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Hello from Sacramento
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Topic: Hello from Sacramento (Read 5505 times)
cill1920
Newbie
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Posts: 4
Hello from Sacramento
«
on:
July 01, 2013, 11:09:34 PM »
I have a love - hate relationship with my cycler. My name is Priscilla and i am a dialysis patient, PD more specifically. I have now been dependent on this for about 3 months now. Its been quite an adjustment to say the least! So my kidneys got screwed, due to renal reflux neuropathy, its a congenital thing. I am on the transplant list. At night i hook up for 9 hours and by day i work full time as a clinical social worker. I am looking forward to meeting and talking with people who are also on dialysis snd have some inkling of what i am going through.
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MaryD
Elite Member
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Posts: 1010
Re: Hello from Sacramento
«
Reply #1 on:
July 02, 2013, 12:44:19 AM »
Welcome, Cilla!
We all have a love/hate relationship with dialysis. I do CAPD (manual) because the thought of alarms going off through the night really bugs me.
Again, welcome.
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Grumpy-1
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Make me the person my dog thinks I am
Re: Hello from Sacramento
«
Reply #2 on:
July 02, 2013, 03:14:57 AM »
Welcome Cilla I too was on a cycler for about 3 years (infections required removal) but going back to PD soon. I was doing 8 hours on the cycler plus manual exchanges during the day. I'm guessing it will be the same when I return. While the cycler routine is not the greatest, it does give us more freedom in being able to work, travel, and such. Hang in there and continue to check in to the forum often. It is nice place to vent, rant, or rave. As you say all of us here are going through the same thing as you. PLUS the caregivers that are here give an addition insight to their feelings and I must say they deserve a big hug for ALL they do for us. You said you been on the cycler for 3 months, how long have you been on dialysis? Come back often, and welcomt to the family. Grumpy
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Make me the person my dog thinks I am
Rerun
Member for Life
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Going through life tied to a chair!
Re: Hello from Sacramento
«
Reply #3 on:
July 02, 2013, 07:12:13 AM »
Hi Cilla, and welcome to IHD. I'm so glad you found us. I lived in Sacramento for 7 years. I had my transplant at first and then lost it. I love Sacramento but had to move home to WA State because I was by myself there. I still have a house in Natomas that I'm renting out. I loved it there with the Delta Breeze which was stronger than a breeze most the time. Plus it was WARM and I could sweat and drink more. It is HOT in Spokane this week so I'm living it up.
I hope you enjoy this site.
Rerun, Moderator
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Joe
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Re: Hello from Sacramento
«
Reply #4 on:
July 02, 2013, 09:39:14 AM »
Hi there Cilla, and welcome to IHD! I, too, am on PD using the cycler as well as a manual in the afternoons. We do know how you feel and are more than willing to share our experiences with you. Look forward to 'seeing' you around the boards.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
willowtreewren
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My two beautifull granddaughters
Re: Hello from Sacramento
«
Reply #5 on:
July 02, 2013, 01:55:42 PM »
Welcome, Priscilla!
I'm sorry you needed to find this forum, but glad that you did!
Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011.
cill1920
Newbie
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Posts: 4
Re: Hello from Sacramento
«
Reply #6 on:
July 03, 2013, 11:12:05 PM »
Thank you all so much for your warm welcome!! I have been on dialysis now since april. I started out doing manual which was ok but sooo tedious and difficult to do while working, however i did have a little more control. while the machine works best in my case, i can see the advantage of sticking with manual. I find my self cursing and moaning at the bloody alarms especially when it goes off at three am. Or 15 mins. Before my actual alarm goes off
bummer thought WA would be alot cooler than sacramento now!! I live in elk grove. I will be roaming the boards for sure
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cill1920
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Re: Hello from Sacramento
«
Reply #7 on:
July 03, 2013, 11:20:52 PM »
Though i must say, i feel like i am the only person in sacramento on dialysis?! Logically, i know that is not true-but either i havent found them or support groups in sac dont exist other than the couple of hospital sponsered run by social workers/nurses(i know!) Which is nice -but i want to find the support group run by the ones who know it best
what is the face to face support like in your town?
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lmunchkin
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"There Is No Place Like Home!"
Re: Hello from Sacramento
«
Reply #8 on:
July 07, 2013, 10:29:42 AM »
Welcome Cill. So glad you found IHD. I feel this is the best support group PERIOD! As a spouse to one on D, this site is a Godsend. We found it after years of D, but we were told about it & have been here ever since. We don't do facebook or tweet. We are simple people just loving life, the ups & the downs. That's life!
We started out doing PD, then In-center & now home hemo (NxStage). Nxstage has proven to be the best for our situation. Hope you find what is comfortable for you. PD was a good option too. Anything done at home is "Sweet" as far as we are concerned. But some like the In-Center too!
Again welcome & God Bless,
lmunchkin
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present. NxStage at home
jbeany
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Cattitude
Re: Hello from Sacramento
«
Reply #9 on:
July 07, 2013, 11:28:05 AM »
Working full-time? I'm impressed with anyone who can manage that and D, too!
jbeany, Moderator
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"Asbestos Gelos" (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter". A term used by Homer for invincible laughter in the face of death and mortality.
Sydnee
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Re: Hello from Sacramento
«
Reply #10 on:
July 07, 2013, 11:37:56 AM »
Face to face support in my town? That's a joke, there is none. Ed has been on PD for a year now and in center almost 7 months before that. But I guess that is why this is such a good place.
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After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14
Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
Mother to Gehlan 18, Alison 16, Jonathan 12, and Evalynn 7. All still at home.
www.donate2benefit.webs.com
papacat
Jr. Member
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Re: Hello from Sacramento
«
Reply #11 on:
July 08, 2013, 01:09:29 AM »
cill1920
Welcome to IHD. I have learned a lot here. I have been on a PD cycler for about 5 months. I used to get many alarms and pain throughout the night. That changed dramatically when I switched to 80% Tidal. Now I am surprised every day when I get up and realize I slept through the night without waking up. My PD nurse was the one who showed me how to change the therapy. I live in the Bay Area and work fulltime. The only support group I know of in the Bay Area meets at Stanford Hospital.
papacat
«
Last Edit: July 15, 2013, 11:09:03 PM by papacat
»
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cill1920
Newbie
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Posts: 4
Re: Hello from Sacramento
«
Reply #12 on:
July 14, 2013, 10:45:29 PM »
Wow i am surprised that even in the Bay there is little face to face support. Well then for sure that is a sign i need to start a group in Sacramento.
Thank goodness for IHD!
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Marebear
Newbie
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Posts: 6
Re: Hello from Sacramento
«
Reply #13 on:
December 12, 2013, 06:55:13 PM »
Hi
I'm in Sacramento! There are many of us believe me. I go to a clinic in Rancho Cordova. Welcome!
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Shaks24
Sr. Member
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Re: Hello from Sacramento
«
Reply #14 on:
December 12, 2013, 08:28:39 PM »
Welcome
glad you are here.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
G.Lively
Jr. Member
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Posts: 66
Re: Hello from Sacramento
«
Reply #15 on:
December 13, 2013, 04:07:37 PM »
I can almost see Sacratomato from my living room window. I'm in the mountains east of Chico. Everybody in Chico is on dialysis.
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Once upon a time I got sick. I got cancer, cancer, cancer, and cancer. Then I had renal failure, dialysis, chronic bronchitis, pulmonary embolism, gall bladder attack, macular degeneration, and a whole bunch of stuff. I'll show you my scars if you show me yours.
I am not on dialysis any longer. I am one of the lucky ones to have survived that ordeal. So I left the forum thinking only those who are on dialysis should speak out. However, the Head-Mama invited me back. I will discuss anything you wish. You should expect some corny jokes from me along the way.
Gerald Lively
Bambino_Bear
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Re: Hello from Sacramento
«
Reply #16 on:
December 13, 2013, 07:01:01 PM »
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I am a caregiver to my wonderful husband, He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go.
He had a transplant in November 2019.
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