Wednesday, February 14, 2018

The Adventure Continues...

Well, I finally got to the surgeon and was told I can go back on PD but apparently there are lots of hurdles to jump through before that can happen. Was supposed to go to Orillia on Thurs. this week but apparently I need Iron so I have to have 3 more sessions of Hemo dialysis and then NEXT week can go to Orillia and PLEASE GOD after that I can go back on PD...I feel like they want me to stay on hemo and I'm arguing the point. I want to try PD until I can't and I'm gonna have to get mean and aggressive if they want to argue with me!! day at a time and today I'm TRYING to fix my comp which had a ransomware program attacking it and has decrypted all my files :( bahhhh if it's not one thing it's another!!
Still here.
Still fighting!!

Saturday, January 27, 2018

Still having adventures!

Went for dialysis today and it worked for a bit and then it just quit so I didn't actually have my dialysis...they put some stuff in the line and said go back to orillia at 10am mon to see if they can get it to work...OR get yet another line installed! Out! Can you just please put me back on PD??? So we'll see what's up mon....

Friday, January 26, 2018


Well, I have not checked in here for a long while and I was going along doing my thing for awhile and then...
I had a bowel blockage in a hernia under my belly button and as of Dec 16th 2017 I got sick to my stomach and it only got worse from there! I checked into Bracebridge hospital on the 18th (not by choice but I had to because I was very sick) and I was instructed to bring my cycler in there and do my dialysis there until Orillia could get me transferred. On the 19th I was given a tube in my nose to help suck out the stuff in my belly and help stop the puking all day. Unfortunately the tube bothered me and I still puked a time or two (excessive yuck in my belly :( ) Then on the 20th I was transferred to Orillia hospital . That evening I had emergency surgery to correct the hernia and blockage (they said they were going to take out my PD catheter and I would have to switch to Hemo dialysis) but when they did the surgery it was a simple problem and they did NOT remove the catheter after all. So I had staples in my  belly, a PD catheter still attached and then they installed a permanent access line for Hemo dialysis in my chest and sent me down for 3 hrs of dialysis. At this point I still had the tube in my nose and I still hadn't eaten anything ...I hadn't eaten anything but a few crackers since Sat the 16th. I can't remember if it was the 22nd or the 23 when they started giving me liquids and I had chicken broth, jello, and tea and the chicken broth tasted like heaven! (It was just standard chicken broth you chicken broth...) but I hadn't eaten in a LONG time by then so it tasted pretty darn good!!
I think actually they started liquids on the 23 because in the night of the 22nd my nurse let me take the tube out of my nose and I had already had two 3 hr sessions of dialysis by then so having the tube out made me feel a hundred percent better!
So I was there until Xmas eve and I had another session of Dialysis and then they allowed me to go home for Xmas!! I was very weak and didn't do any of the things that I planned for Xmas but I was at HOME with my boys and couldn't have been happier to be anywhere else!
Even pop and Denise came by to see us and say hi!
Since then I have been going back and forth to Orillia for dialysis 3 times a week. I was waiting to be able to go to Huntsville which is closer but they had to know things were all good first before they could send me. My access line was NOT very good though and as of Jan 11, 2018 I had another surgery to replace it. Without checking it I started dialysis in Huntsville on Sat Jan 13, 2018 line worked!! I have been going there Tues, Thurs and Sat every week and hopefully after I see the surgeon again in Feb. I will be able to go back on PD again.
In the meantime this is just a speed bump in the road (or if you like an adventure) and it too will pass!
After ALL of that I must just say that I am grateful to be here, alive and still kicking!!

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 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'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.