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)

Wahoo! Finally some GOOD news!

My surgery is scheduled! I go in May 24th for the actual surgery at the Grey Nuns Hospital. On the 25th I go to the Aberheart to the PD Clinic to have them look at the wound, clean it and change the dressing then on the 28th I start my PD classes from 9-4. So Happy!

Also on the 28th I am seeing Roger Waters and the Wall so it should be a fun time :) I am going to need to relisten to The Wall So i remember what it is about...lol.

This is the song I remember from the 1980's when I was in high school...poor Mr. Chapman, we drove him crazy playing that song! We Don't Need No Education (Offically called Just another Brick in the Wall).

Thanks for all the support everyone :)

Oh and for the record, I had told the renal clinic at the Grey Nuns about the adverse reaction to local anesthetics...2 yrs ago! It was in my medical chart...the one that my specialist obviously hadn't read.

Cora

When I hear the song "I'm Going to Love You Through It"...

this is what I am picturing...

This is what I see with my DH even when I am feeling like giving up he is there. Remember just to hold on and get passed that tough spot. Reach out even if it is to just blog about it. I am actually not sure how many people actually read this blog...but I hope it helps just one even if that one is me.

I hope your hear that too :D

Thanks

Cora

I don't ask for good vibes to be sent out to universe too often...

but I am asking today. I have my appointment today at the Grey Nuns Hospital to do the consultation to have the catheter excised for my tummy, so I can start PD. I am hoping that we can co-ordinate it all. I was quite anxious lastnight and didn't sleep well.

Think I will be listening to Danielle Lowe today, dang I wish I had bought her album when I had met her. She is soooo good!

I am scared to death and so unsure about all of this. Trying to take it all in stride...not really working though :) I just wish that this would all settle...I need to get back on the transplant list, etc. There is a wonderful Rick Tippe song called "Keeping The Faith". It has always been one of my favorite songs and now it brings on more meaning for me. Again, it is has to do with cancer but the feelings are the same.

I am so thankful to my husband who is just amazing :D I don't say it enough but I love you honey. Thank you for being there through it all. Thank you for being my side through it all. thank you for staying strong and for being there even when I wanted to give up and crawl into a hole. You are the best my sweety :)

Cora

Another quick update...

Wondering if my post about everything going on caused a ruckus? I heard from Susan on Wednesday...what a complete turn around. I now have an appointment for a consultation at the Grey Nuns Hospital, at 2:30. We are going to be discussing the best way to excise the catheter, which is a far cry from "Not going to happen unless you use the local anesthetic" comments. So I will be starting my dialysis just not when I thought I would. Looks like it will be sometime in May or possibly early June.

Yeah!

Cora

Arg...I really hate AHS!

So I heard back from the Renal Insufficiency Clinic to "discuss" my situation. Well the short news is, unless i give in on the local  anesthetic, it is a no go. I gave a suggestion, an epidural (I know this works as I had it for both kids), apparently that is a no go. Dr. Passani has said that they will not book an OR for me either, as no "reputable" surgeon will do a "very minor, 5 minute surgery" under a general anesthetic.

Also we can't do the the hemodialysis as the catheter is also done under a local anesthetic. So that is it...guess I will be waiting until I am so sick that I can't go on and I am hospitalized. I am so done! Tired of fighting the system. I have no more energy to give to this.

Oh and I am listed as noncompliant, so they have given up on me. The noncompliance is around blood work. I have the veins of a 90 yr old. They are small and deep, add in the fact that I am in renal failure does not make it easy to get blood. I have had bruising so bad I have been asked if I have been in a fight! Never mind that the lab tech is having to poke me more than once. Which add to my stress level. I actually have panic attacks waiting and often leave just in tears. The last lab took 2 techs to do my blood; one to hold the needle in the place and the other to hold the vial at a lower level, so that it would fill using gravity... definitely doesn't evoke confidence to get my blood done.

So that is it. I will be going on as much as I can.

Cora

Finally heard from the Renal Insufficiency Clinic R: the PD stuff.

Yes life has knocked me for yet another loop...here are my choices:

1. Have the "minor" 5 minute procedure under the local with a mild anti-anxiety medication like Ativan
2. Wait for an OR in order to book time for said "minor, 5 minute" 1/4 cm incision with no stitches operation.
3. Do nothing.

Hmm, not great options right? I am so pissed right now! I am tired of being treated as a number. As a one size fits all plan. I am me, I do NOT do well under a local, never have actually. Ativan is like candy for me, again it doesn't do anything. The second option was offered but with such derision on Susan's part. I think she just thinks I am wanting to waste time and money, not my intention. I am trying to make things easier on everyone especially me...THE PATIENT!

I could just wait until I am so sick that I would then have to admitted to hospital, then they would HAVE to deal with me. So frustrating...I really wish I was back in BC where I had a good healthcare team, one that got me and helped to alleviate my anxiety not add to it. At least in BC I had a GP in addition to my dentist, eye doctor and renal specialist. Here it is all piecemeal.

Health care is being used as a election promise, depending on what you are needing depends on who you should vote for. It shouldn't even be election issue, it shouldn't even be on the table. It should be just fixed. There are many ways to do so yet it hasn't been done. I hate Alberta right now! I want to be back in BC not here...so sad!

Cora

Ok, still have no idea as to what is happening as of yet.

I hope I hear today as this is very frustrating. What we need in Alberta are clinics that actually work together, as the current system isn't working.

I would love to see a clinic where it is one stop shop, so to speak. Where your GP and Specialist are all in one place. Right now I am going all over for me renal care. U of  A for the PD clinic, Royal Alex for the Rean Insufficiency Clinic and on and on. When you are dealing with a life threatening illnes it would be nice to have to run all over the city for care.

Cora

Another Update....well more of a rant actually ;D

Well as you all know I am supposed to starting my dialysis on the 30th, well now I am not so sure that will be happening (still waiting for a call from my nurse). The PD Clinic called yesterday to confirm everything. One of the things I had been wondering was when they would be doing the surgery to pull the catheter out so I can use it. Well apparently its the first day, under a local anesthetic. I wish I had been told that earlier as I have issues with locals, just ask my dentist...sigh.

When I get dental work, I need 4 shots around the tooth plus one in the roof of my mouth if the tooth being fixed is the in the top of the mouth or 5 shots in the bottom of my mouth. Then i need at lest one or two more half way during the procedure as I absorb the anesthetic to fast.

So I explained this to person who called. She spoke to her supervisor who said to talk to my renal specialist, so I called them. They called me back, saying they just missed the supervisor, so I have to wait until today to find out what next. then I was asked why they were dealing with it. This isn't something they normally deal with.

By the way my husband has been sooooo supportive. I am so fortunate to have him in my life, thank you sweetie you know who you are :)

So again everything is up in the air...

In the meantime I have found some songs that give me solace....

I absolutely adore Danielle Lowe, she is a local girl from Edmonton, AB. She is amazing! I know this song refers specifically breast cancer, however anyone facing a life threatening illness will relate to the emotions in this song.

This one is just amazing by Reba McEntire-The words just hit me in that place.

Ok so now I wait..Thanks for letting me vent!

Cora

Went to the Renal Insufficiency Clinic yesterday...

This time Hubby went went with me (at my request). We got some great ideas in how to deal with my diet. Cannot believe what I have to avoid as far as food to avoid that is high in phosphorous.

Here is a good explanation from the Mayo Clinic...

The kidneys help regulate the level of phosphorus in your blood. If your kidney function is impaired, eventually you'll likely have elevated phosphorus levels (hyperphosphatemia). In turn, the elevated phosphorus decreases the level of calcium in your blood, which can lead to bone disease.

Often, 800 to 1,000 milligrams (mg) of phosphorus a day is the limit for someone who has kidney disease. Most healthy adults may eat double this amount.

Nearly every food contains some phosphorus, so you can't eliminate all phosphorus from your diet. Generally foods high in protein (some meats, dairy products, beans, legumes, nuts and seeds) are higher in phosphorus. Therefore, unless you're receiving kidney dialysis, you'll be asked to eat smaller quantities of them. Whole grains also are higher in phosphorus, so choose refined ones.

Example of Vegetables I am allowed to eat or have to avoid..

Avoid                                                             Permitted

Peas (fresh green, split, black-eyed), beans (black, garbanzo, lima, kidney, navy, pinto) or lentils	Green peas (canned, frozen), green beans or wax beans
Starchy vegetables: corn, parsnips, pumpkin or sweet potato	Starchy vegetables: potato, rutabaga or winter squash
Other vegetables: artichokes, asparagus, broccoli, mushrooms, peapods (cooked) or spinach	Other vegetables: cabbage, beets, carrots, celery, cucumbers, eggplant, lettuce, peppers, onions, tomatoes or summer squash

So it is noted that potato is permitted but it is also high in potassium which the kidney has a hard time processing as well. Interesting though that I cannot have cooked broccoli but I can have raw broccoli in small amounts.

Potassium guidelines for choosing foods

Fruit I can eat and fruit to avoid (list is from the Kidney Foundation of Canada)

Meat, Milk, Grains and Other Items I am allowed to eat and which to avoid.

 

Vegetables I can eat and which I need to avoid.

So I will be starting dialysis within the next month. I need to do training first and then I will be doing it on my own. My diet won't be as restrictive as it is now.

Cora

World Kidney Day 2012

World Kidney Day is March 8, 2012. It is sharing with International Women's Day this year.

http://www.worldkidneyday.org/

Sorry it has been a while...

Last Friday, 10 days ago, I got hit with a bug. I was at knitting group when I suddenly got the chills. I was waiting for hubby to pick me up from Starbucks at Northtown Mall, across from Northgate, when I started to feel cold. I thought it was due to this Starbucks having a drive thru and it was starting to get cold outside.

While we were driving home we decided to go out to eat, we were both tired and didn't feel like cooking, so we went to Boston Pizza. I could not warm up, so we got our dinners to go, paid and headed home. By the time we got home I was running a fever. The next morning I felt like I was trying to cough up a lung! So I called into work on the Sunday and said I am just too sick to make it in. I was floored!

So Wednesday, hubby took me to the ER at the Royal Alexander Hospital. It actually wasn't a bad wait, we got there around 7:45 pm and got into the ER around 10:45 pm. The staff were great. The Dr. came in and listened to my chest, couldn't hear anything so sent me for x-rays. I had urine tested along with blood work. When the doctor came back he said he was suspicious that it could be pneumonia (confirmed the next day) but he was also worried about my creatine levels, they were at 500, not good. A couple of months ago they were at 300. We were out of there by 4:30 am. I must say the staff there are great!

I have to say, I am thankful to my loving husband who has been there through it all. He is the best :D

The Renal Insufficiency Clinic called the next day, I have an appointment on March 22 at 11:00 am. If my numbers don't rebound by then I start dialysis.

I will let you know more on the 22nd.

Cora