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

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

Sorry it has been a while since I have posted...guess no news is good news right?

Left: Rocaltrol
Right: Sodium Bicarbonate

So I have some news. My numbers have been pretty steady, although I lost a percentage point in kidney function. I am now at 11% and my energy is down a bit. It has been decided that I need to get an iron transfusion. Most iron supplements mess with my IBS and we did try the newest iron supplement that was supposed to be easy on stomach, however the stomach cramps were so bad hubby was threatening to take me to the ER. So no oral antibiotics for me. I did try an oral herbal supplement but it wasn't giving me enough iron to help.

So now I take Imodium (for the IBS), Tylenol Migraine (self explanatory), Gravol (for nausea-use regular at home and the ginger for at work) as well as Sodium Bicarbonate (500 mg) 3 times a day and Rocaltrol once a day.

I also went to the Optometrist to get my eyes checked, hadn't had this done since the emergency visit in 2009. Turns out I have the beginnings of cataracts which is starting to affect my vision. As my eyes are dry I have to use drops twice a day, however that is easier said than done. I actually use an ointment as I can't get the drops in at all. These are not covered by Blue Cross at all. So now I have to go in every year for an eye exam, which is not covered by AB Health. We do have Blue Cross thankfully, although even that doesn't cover all things. Thankfully it did cover a 3 months supply of the Rocatrol ($116.83) paid only $20.26. The Sodium Bicarbonate doesn't appear to be covered, that cost $32.92. The cost for the eye ointment was $10.49 and I am having issues with getting this into the eye as well...frustrating!

I work at the Optic TV Lounge in Southgate (Edmonton AB).

I am enjoying my new job and got the approval from the new clinic, yeah! The other clinic wouldn't approve my working at all. I just have to make sure I don't get over tired is all. So anywho gotta run for now. See picture to the right. I have a lot of fun and it isn't a stressful job. The only thing is that I am tired and my muscles hurt at the end of the day, but I just feel so good after a good day at work. It is so much fun talking about Optik TV all day. I meet some great people. Love it!

Cora

A rally this Saturday rgarding Health Care....

Check out some of these documents that were linked this week...


Hmm got all this from Friends of Medicare. It concerns me that we are having more and more services privatized. I remember when I ended up waiting 4 months for an MRI or I could've paid for it and then got in done in a week. Why should I have to pay for a service that is covered by Medical?

I shake my head at all of this...

Cora

The Alberta Health Services Crisis (caution may be gross for squeamish stomaches)

I thought I should speak on this as it has been in the news a lot this last week...even calling in to question of an MLA's sanity by his own party! Dr. Raj Sherman is an ER doctor who is also an MLA for the ruling Conservative party. Dr. Sherman finally decided to take the government to task over the long emergency room wait times and believe me he is not exaggerating on this. I have numerous examples in my own life on er wait times.

Example 1:
It was June 2008, in fact we missed our 1st year anniversary, I developed what I thought was the stomach flu. I couldn't keep anything down, water, ginger ale, you name it, nothing would stay down. I have 3 days were I really don't remember anything because I was delusional. I finally requested to got to the ER. Not sure why we went to the U of A when we live closer to the Royal Alexandria, however we went. We got through triage at 8:00 pm. I still vomiting, bile mainly. We finally got into the er at 4:00 am.

We still had no idea what was causing the vomiting. Dr. Caldwell was called down, he finally showed at 8:00 am. They did some blood work and urine samples and finally came up with a urinary tract infection which required IV drugs, it was that bad. I stayed in the ER for 3 days as there were no beds available on the wards.

Example 2:
Fast forward to September 2009. I had been on antibiotics for various UTIs 10 times over a 9 month period. I was getting my 11th dosage when it was ordered that it had to be given by IV, oral meds weren't killing the bug. So off to the Royal Alex to start this. We arrived at 8:00 am like I had been told to except they had no idea why I was there (my GP at the time didn't have hospital privileges), so I had to see one of their drs. this was finally completed at 12:00 noon. I got my first dosage and was sent home. Next thing I know I am having diarrhea so bad I couldn't get off the toilet. We ended up calling an ambulance because I couldn't even walk to the car I was in so much pain.

So back to the Alex...we arrived at about 1:00 pm, I wasn't seen until almost 8:00 pm. I had not meds to stop the cramps, nothing. At 9:00 I was in the er and seen. The nurse administered Buscapan which was to help with the cramping, when all of a sudden I could feel my heart racing. I could see my husband just panicking when he saw numbers, etc before I passed out. The gave me something and I woke up to being moved closer to the nursers station, then I was moved to isolation when I was stabilized.

The next morning I was moved to a ward. By the way the ward is only supposed to have 4 people to the ward, there were 5. One was a patient that should have been on the psychiatric floor but there were no beds available. She had been in this room for a month...yes a month! I stayed there for 5 days. There were 2 people that should have been in a long term care facility but were in acute care because there were no beds for them. I was finally able to go home after 6 days in the hospital. I missed my husband and my cats. I just wanted to go home.

So the long and the short of it is that I now have IBS-D (Irritable Bowel Syndrome with Diarrhea dominance. It took 6 months to get it under control it is quite embarrassing if I have flare up away from home as i have no control at all with a flare up.

Example 3:
I am allergic to bees, wasps and hornets. I don't usually carry and epipen because when I have them I usually end up throwing them out because they haven't been used and they cost $100.00 to get just one. So I have gotten stung twice since moving back to AB from BC. Both times I ended up in the ER. Thank fully the first time the ambulance gave me meds right away and all was good. I waited 4 hrs in the ER, not bad I am figuring.

Fast forward to this last summer, I got stung on the Yellowhead Hwy while in our truck. Hubby takes me to the Alex (it was the closest to get to) to be only told that we had a 6 hr wait. We ended up leaving and I took Benadryl to deal with the swelling and we watched my breathing.  It just seems to get worse everytime.

This is what Dr. Sherman was complaining about. I am sure there are countless other horror stories out there as well.

There is the young woman who has breast cancer. The life saving drugs cost $4000.00/month and she has to make a choice to by the drugs which will bankrupt her family or to die?!?! Not a great choice there.

http://www.globaltvedmonton.com/video/index.html?releasePID=dvFjxK7rQAKTaWj7eCfPzKnhW9K16H

There was the woman who lost her battle to colon cancer because she was unable to get into the Cross Institute.

I am thankful for politicians who step up like Dr. Sherman who is now facing his own complications. I am hoping that people with be supportive of Dr. Sherman and speak out about their own concerns about Alberta Health Services. Ours need an overhaul to better serve the people who use it.

(I will be cross posting this to my main blog as well)

Cora

I had an interesting conversation with a colleague lastnight...

I had gone to work after having a nap. I had gone to the dr's and I was right I had another Urinary Tract Infection. I got to work and I was doing fine, but I could feel a fever coming on and general malaise. I finished my shift and spoke with my manager and told her that I just didn't think I could come in today. turned out it was a great idea as I had been up several times in the night to the bathroom so I didn't get a lot of sleep.


My colleague asked me how do I do it? I come to work (Nygard Fashions) and work hard and then go home. I also am involved in my community work (Alberta Ave Community League, Safe Streets, Alberta Avenue Revitalization, EFCL Planning and Development Committee) as well. Sometimes I wonder but I came across a blog today that may have well given me the reason as to why; Angie's blog on the Kidney Foundation of Canada. Angie also has a blog here as well. I have to say thank goodness for the internet. Sometimes I feel as if I am way over my head on all of this.

Sometimes it feels as if I am running her there and everywhere just putting out fires. the Alberta Health Care System is in crisis, which is difficult for a patient who is dealing with one health issue after another. I seem to be dealing with one health crisis after another and unable to see the doctors that I should be seeing. It can be very daunting and scary at the same time.

Cora