Saturday, October 11, 2014

Night Cycler

Getting ready:

Ready:

Dialysis

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...

Thursday, September 11, 2014

What Can I EAT?

At this point I don't have much of an appetite anyways but I am so frustrated every time I go shopping. This week I bought grapes, berries and make the usual turkey sandwiches and that's pretty much it. I feel hungry but don't have much that interests me to eat. :(
I did manage to eat 2 eggs in toast but really as they have been for a long while they are YUCK!!
I think I might just go out and buy a dozen donuts and make myself sick!!!
(not really) ...I just wish I liked food better right now.

Wednesday, September 10, 2014

Aranesp

Thurs. Aug 14, 2014
Thurs. Aug. 28, 2014
Thurs, Sept. 11, 2014

Thursday, August 28, 2014

Still Getting Through It...

It's soon going to be my birthday and I'm having a party. Nothing fancy obviously but a few friends and some good food. Most exciting I'm having margaritas! :D
I'm still ok. Most days are hard but I try not to worry about it or think about it too much.
It will be what it will be. I struggle to remember that and take each day as a gift and a treasure (which is sometimes difficult for me). I don't know if I'll make it back to clinic or maybe past it again and just waiting for the next one or if things will go bad and I'll have to go to the hospital and start dialysis but whatever happens will be ok.
Today I am sure that it will. I like my Drs. and nurses and I'm sure they will all take good care of me so somehow I'll handle it.
I will be ok.

Tuesday, August 5, 2014

Clinic

Well I am home from clinic and trying to digest the latest news.
I know that my kidneys are failing and it will be soon time to start dialysis but I really thought I would have more time. :(
I have dropped to 12% function and over the next 6 weeks will somehow have to get my head ready to handle the reality that I live in.
It's not easy.
I want to wait until hubby is off work to go through this but I don't know if I'm going to make it until then.
We will see.
Whatever will happen will happen. I am sure I can handle this and I'm gonna figure it out. It might be hard sometimes though and I'm sure the monthly appts to dialysis will get stressful but somehow I'm gonna find my way.
In the meantime I am trying to get my head ready!!

Friday, August 1, 2014

Waiting

I'm tired.
I go to clinic on Tues. and we'll see if I have dropped more function but I think maybe I have because even with my shots I'm tired and really have no energy to do much.
Hopefully this weekend we'll go to mom and dad's to see Michelle and have a visit and that will be fun but it will also be tiring.
I just wonder how long it will be until I have to start dialysis and how much time of being tired and without energy I will have to endure? I have so many jobs to do and no energy or desire to do any of them. :(
I really just wish that I can hold on until after hubby is off for the winter because we will have a week of training for dialysis to go through and I need him to be with me and learn how to take care of me :S
It could be that long or longer even and sometimes it gets difficult to deal with.
I am very isolated. Usually this doesn't bother me. I remember back when I used to work and I was forever getting sick with other people's germs. Isolation keeps me healthy. Sometimes though it's frustrating. Sometimes when I have the energy Gib and I go for a walk but even that I avoid...even though I KNOW that I should do it anyway...I look fine. I look good even. The more weight I lose I even look better but it's because I hardly eat and really don't enjoy it much either...How much of it can I endure? I MISS food and I miss things being delicious...I don't really even remember the last time I actually TASTED something good...everything is really pretty blagghhh and that is pretty hard to endure too. I always liked food. I always liked making new goodies for our parties and now I pretty much have no idea. Pretty much don't care much either cause I can't really enjoy it anyway :( but...I will keep on keeping on...
I need NEED need to drink more. My nurse says at least 6 cups a day and I know some days still I just can't do it :( it's very very hard. You would think the pain of gout foot would keep me drinking but instead I forget and then the foot starts again and I have to drink more than 6 cups to straighten me out. I wish I was better at all of this, I wish it was easier than it is. :( But again, I will keep on keeping on...because I have to figure it out. Somehow...
I think I'm supposed to learn something from all of this and I don't really know what that is. Right now all I know is that I'm tired. I have been many kinds of tired in my life and many of them have been much more difficult than this although this is a very slow, draining, long-term process and is so slowly gradual that I don't even really realize how bad I feel. I am just tired. Tomorrow I'm sure I'll feel better...

Aranesp

Thurs. July 3, 2014
Thurs. July 17, 2014
Thurs. July 31, 2014

Monday, June 23, 2014

June 20, 2014 ~surgery date

early morning surgery...there by 8am and going into surgery after 10am
then around 12:45 I was waking up and shortly after on my way home...




Aranesp~

June 5, 2014
June 19, 2014

Sunday, June 1, 2014

Aranesp~

Thursday March 27, 2014
Thursday April 10, 2014
Thursday April 24, 2014
Thursday May 8, 2014
Thursday May 22, 2014

ALL taken.

Thursday, May 15, 2014

Clinic

Back from clinic. All signs good. New catheter appt set for June 21st if all goes well...I lost 20 lbs -8 kg!! hopefully a little more if I can too...
All Levels good! :)

Monday, April 21, 2014

Time...

Taking one day at a time and trying to figure out what I'm gonna do with my time...

Wednesday, April 9, 2014

Well...

I have had a stroke and am working on getting better.
I am ok at this time and we'll continue to fight forward.
I got LUCKY because it could have been much worse so ill keep thinking positive!!

Wednesday, March 26, 2014

Pre Admit Appt ~03/25/2014

Had my preadmit appt at hospital for surgery on the 4th of April.
Had to have bloodwork and ECG and a pregnancy test! LOL OMG!!
I'm not worried but it made me giggle....
I'm ok. I'm trying not to stress and worry and keep positive thoughts.
Will be in hospital approx. 4-5 hrs over the day and mom is going to take Gibby after school for the weekend so I don't have to stress and worry about him or anything else while I heal up.
It's going to be FINE!!! ...and hubby not back to work yet either so he will be here to take care of me while I rest and recuperate! :D

Aranesp~03/20/2014

Second shot early.

Aranesp~03/13/2014

One shot early.

Clinic ~03/11/2014

Clinic appt. got some idea when my surgery will be...and most levels ok.

Tuesday, March 4, 2014

Emergency App

Installed an emergency contact and med app on my new phone today! Oh yeah and did my fasting bloodwork this morning for clinic next week! 

Sent from my BlackBerry 10 smartphone on the Rogers network.

Thursday, February 27, 2014

The 5 Stages of Kidney Disease


For those of you who may be curious or want to know.
Mine is brought about from PKD (polycystic kidney disease).
I am in stage 4.

Aranesp~ 02/27/2014

Taken today as well. Thank God because my energy has been very, very low. :S

Aranesp~02/13/2014

YES I did take it...I remember getting Gib to bring it to me in bed along with other meds I had forgotten :S
during my 2 weeks of sickness from a cold...

Monday, February 10, 2014

Bumps on the Path

It would seem that my journey towards dialysis is not going to happen as smoothly as I would like after all.
I was supposed to go tomorrow for a pre-admit appt at the hospital and then surgery on Fri. (Valentine's Day) but as of last Tues. I am SICK with a nasty cold and I don't believe I'm going to be ready for surgery by the end of the week. :(
soooo...next appt will be sometime in April...think positive and NOTHING is going to upset the apple cart between now and then...oh and that I AM going to survive this stupid cold!!
There are times when I wonder because I'm not a very happy camper. :(
I WANT time...for the catheter to be buried, to heal and to be READY whenever I DO need it.
At this rate I'm going to need it before it's ready!!
Of all the times to get a cold (when I have NOT caught one for a LONG, long time now) but it's the time when I MOST don't need to have one!!
SOOO frustrating!! Thanks universe, but I'm really done with roller coaster rides!! So...if you wouldn't mind backing off for awhile and not "helping" me that would be GREAT!!

Aranesp~01/30/2014

yes i have taken this shot!

Thursday, January 16, 2014

Aranesp~01/16/2014

Phew! Clinic yesterday and taken my shot today...back on track even tho I missed Dec. appt.  and had no Aranesp left at all!! ;) all good...

Clinic Appt.

Finally had my clinic appt. and discussed bloodwork. A few changes in meds because of a couple of levels slightly off and have been referred to surgeon for my catheter surgery...waiting for him to call with surgery date. Apparently yet again I have a UTI (which i'm guessing is actually infection from a burst cyst because I DIDN'T know at all!!) however, am taking some antibiotics to clear this up.
So it kind of explains the general unwellness I have been feeling for a week or so and hopefully will get back on track again by next week! ;)
Other than that BP good, potassium, phosphorous and sugars all reasonable. It was calcium a little off and made a couple slight changes to fix it.
Doing ok!

Thursday, January 2, 2014

NEW YEAR

My intentions for the new year are just to continue doing whatever I can do to keep healthy, eat right, get some exercise (need to work on this the most), and continue to persevere in health and in writing.
I'm NOT giving up and I'm not gonna just lay down and die either!
My body doesn't work as well as it used to so I do actually have some limitations but I still have my MIND, HEART and SOUL and since I believe these are most important I guess I really have all that matters!
I will try to focus and keep myself on track in a more regular way this year!!

Aranesp~01/02/2014

First shot of the year and last shot in my possession...need to make a clinic appt SOON!
But YES, I have had my shot! ;)

Wednesday, January 1, 2014

Stressing?

Christmas is over and we're into the new year today already and I have nothing really at the moment to be stressing over and yet every day for the last 3 or 4 I've been getting headaches :S
I'm kind of tired of ailments, money issues, stress and worry and I see no end in sight.
All I can do is keep doing the best I can and hope for a better tomorrow but today my head hurts and I just don't see it. :(