Tuesday, January 17, 2017

The Latest

I have added an extra fill bag (Extraneal) and for awhile it was weird because I don't manual drain anymore but eventually I got used to it.  I still have to drink enough or I don't drain properly...this is always a struggle for me but I'm working on it. My sugars are low so I'm trying to eat more but all my other levels are in control again and I restarted Spironolactone so hopefully my BP will come back to reasonable. So I am OK! :) I'm just hating the cold most days but I will survive. :)

Wednesday, November 23, 2016

New Changes

So...I added more fluid after last clinic (but still just 2 bags at 4 cycles) and then after new clinic it seemed to be working but since my bloodwork I am having some issues. Monday I start a new bag of something or other that will be inside until i hook up at night again (and will drain then) and hopefully it will help.
Not having functioning kidneys anymore makes things more difficult. In addition my potassium is still low so I'm starting a potassium pill in a day or two and my iron is low so I have to take a shot every 5 days instead of once a week and in Dec I will be going to have an iron infusion to help this situation...so I'm a bit stressed but I'm just trying to breath and figure it out.
I'm not working, creating or Christmasing at all today...just reading comp and thinking about what it would feel like to be warm! lol (soooo cold!! I hate winter time!!)

Tuesday, August 9, 2016

New Check In

Every day is a new day.
Every moment will pass.
I am just going along living day to day. Reading, writing (world building), drawing, watching shows...watching a lot of shows lol.
I changed from 3 cycles to 4 but still only two bags and so far it's ok. I may have to add a day dwell later on but until then...I'm trying to appreciate my time.
I COULD get a little more exercise...it's a problem for me because I HATE being tired (which I am a lot and am in transition to one shot per week of my aranesp for that) but I'm still thinking about it lol...we did go for a walk a couple of weeks ago (family picnic) and I went for a swim (well more like a wade) but having the option is GOOD and I do appreciate that. I was VERY tired afterwards and had to nap in my hammock for a bit but it was a GOOD day and I'm happy we did it! :)
Living for small moments! :)

Monday, October 5, 2015

Checkin In

Dialysis has been going ok (for ONE whole YEAR!!) but maybe time to change it a little...doing a 24 hour test to check and be sure then maybe programming my machine to update.
Otherwise, I'm just living life. Trying to write and paint and BREATH.

Saturday, October 11, 2014

Night Cycler

Getting ready:



Well, it's been a couple of weeks. Every night around 10 I hook up to the machine. Sometimes I have alarms but so far they are from my exit care site and the dressing pinching the tube which means I have to "fix" it and carry on. and other than that it fills, dwells and drains 3 times every night.
I'm handling it but sometimes I'm scared about it. Every day is a new day fraught with worry, stress and trouble but I try hard not to worry about any of it. I'll deal with it when it hits me but I always have to be careful and mindful and pay attention and I think sometimes that is a real difficulty for me. I HOPE that I can stay on top of it. Is it the day when I can look back and say isn't it amazing the care I take of myself? I don't think it's today...I have ideas about what could happen and I freak myself out way too much if I think about them so I try not to. ONE DAY AT A TIME. Sometimes even a moment at a time if that's how you get through it. But...I am still alive and so far am still ok so I have to be grateful for that.
I'll post a couple of pics to show off my machine...and keep on keeping on.

Friday, September 19, 2014

Tube in

On Wed. I had my tube sorted but for now until Mon it is covered up! My tummy is itchy but it's ok otherwise...