I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: cill1920 on July 01, 2013, 11:09:34 PM
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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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Welcome, Cilla! :welcomesign;
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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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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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 :welcomesign;
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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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Welcome, Priscilla! :waving;
I'm sorry you needed to find this forum, but glad that you did!
Aleta
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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 :o bummer thought WA would be alot cooler than sacramento now!! I live in elk grove. I will be roaming the boards for sure :2thumbsup;
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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 :secret; what is the face to face support like in your town?
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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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:welcomesign;
Working full-time? I'm impressed with anyone who can manage that and D, too!
jbeany, Moderator
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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. :welcomesign;
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:welcomesign; 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
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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. :stressed; Thank goodness for IHD! :2thumbsup; :cheer:
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Hi :2thumbsup; I'm in Sacramento! There are many of us believe me. I go to a clinic in Rancho Cordova. Welcome!
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Welcome :welcomesign; glad you are here.
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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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:welcomesign;