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/