ARG...frustrated update.

PD Cycler

Ok well as you all probably know the twin bag PD was not going well. So I was finally switched to the cycler. the first 2 days as I was getting used to it, it seemed to be working very well. Well its not. I am not draining nearly enough liquid as i was in those first 2 days.

So I call the after hours number...now I need to go back to the twin bags and do 4 full exchanges and the fifth time I only drain and not fill so that I can get some sleep tonight.

Since I am putting in 6 L my output should be close to that if not more and i am not. I was in the negative this morning. So, so frustrating. If we can't get the PD working than I am going to be going onto hemodialysis...not my first choice or favourite choice.

Thought I would update as I had sent out some rather cryptic tweets lastnight about alarms that were happening every 2 hrs.

Cora

Update

On Monday. November 26, I am doing training on how to work the machine to do overnight pd treatments. I am less than pleased with the twin bag exchange. It is NOT going well at all. Hoping I can find a way of getting this to work as I don't want to go onto hemodialysis. I will endeavor to try to keep y'all up-to-date on what is happening.

Cora

Kidney Pattern....

Knitted Kidney

I came across a really cute knitted pattern for a set of Kidneys and Ureters on Ravelry. I am planning on translating the design to crochet as I would really like these for me. I will make the pattern free on Ravelry and here once I have figured it out.

Cora

Am I prepaed for an emergency...

I don't often think about this but with our crazy weather maybe I should. On Pinterest I cam across this picture.

72 hr emergency supplies

However I need to think along the lines of what I need. I am currently doing the twin bag dialysis (PD) however we are planning on switching to the machine at night. So if the power goes out I will need to make sure i have enough twin bags for several days of dialysis, along with food I can eat. will be interesting. I will need to look at this further.

Yahoo! The dialysis is working!

So last week I went in and we tried again, For whatever reason it started to work! Now I just my IBS-D to settle down...lol. I can't believe my energy level right now. I was so tired at the beginning and now I see a light at the end of the tunnel. I actually walked in the Pride Parade on Saturday and wasn't tired :) I actually kept up with the pace of the parade! I think I can even now walk the dogs again without tiring out within 2 blocks...yeah!

Cora

Latest Update....

All went well with the surgery although I still quite sore. we have hit a glitch in the dialysis though. The fluid is going in no problem, but isn't draining. My IBS-D is an issue. As long as it is out of control, has been for 2 yrs now, I will have issues. We have taken a break and I go back on Monday. In the mean time I am supposed to take Colase (a stool softener) and Benefibre for the fibre. So we shall see.

Here are some pictures of the catheter that I tool on Monday. Sorry the pictures may not be of the best quality. It was hard to take them with one hand.

Catheter-pic 1

Catheter-Pic 2

Catheter-Pic 2

I will let you know how it goes on Monday.

Cora

Just a quick update....

Surgery went well, although I am still very sore...didn't help that Saturday night we almost got into an accident on the way back from the Da Camara AGM BBQ. Idiot cut us off because he was in too much of a rush to wait for the bus to turn onto 82 st from 118 ave...so I am a bit more bruised as a result.

Fast foreward to today...went to the PD Clinic at the Aberhart Centre to learn how to do this dialysis...boy is there a lot to learn! So  am doing okay...a bit emotion as reality hit like a ton of bricks. So we started after I grabbed a coffee and something to eat. I woke up at 8:15 when I should've been on the trian...oops. I hadn't slept well which happens.

So we started to solution in my abdomun (sp?), which went fine...draining was whole other ball of wax, let me tell you! As you all know I have been dealing with IBS-D. So i go through bouts of constipation and diahraeh  (sp?), unless I can eat my high fibre diet which helps to even out things. Well the last 2 years been told, no way!

Now I have been asked why their was none of the "history" in my files...to which I responded with a lot fo anger and frustration, I had had enough and wasn't taking anymore crap from the health system. I am used to having control over all the decisions that go along with informed choices. Non of which I have had in the last 2 yrs. I fell like Dorothy in The Wizard of Oz...."I don't think we are in Kansas anymore Toto." Although in my case I would be talking to Leo or Scrappy...lol.

So after having an x-ray so we can see what is going on, if anything, so I havet o go back in the morning, this time with the hubby, who has to take time off of work, because this woman has had ENOUGH! So tommorrow I see my nurse, dietician, Dr. Passani and the social worker. I bthink they are worried because of what I said in the. Officce.  So we shall see what happens tomorrow.

Tonight I am going to enjoy the Wall-Roger Waters is in town for the next two nights...yeah!

Cora

(PS will come back and fix the errors whenn I can access my home computer)