Welcome One and All!

I started this blog to chronicle the my life as a renal patient. I started having issues back in 1983. I had an infection that hadn't been treated as an infection; it had been treated as pulled muscle as I had been working as a nanny at the time. Life went on and then I dealt with a series of infections of infections which resulted in 4 minor surgeries from 1985 to 87. Than I had 3 kids; dealing with minor infections along the way. This culminated in discovering in 1998 that I was in what the call Chronic Renal Failure, my right kidney was imploding, the left was starting to go as well.

I finally had the right kidney removed in 1999, which resulted in complications. I almost didn't make it. When I moved back to Edmonton from BC, I started seeing a nephorogist, Dr. Caldwell, from the U of A. In 2007 I had 75% renal function, fast-forward to today I have 13% and it is getting worse.

I decided I needed a place to share what I am going through for a variety of reasons:

1) to get out of my head and work through the anxiety and fear that I am feeling.

2) that somehow my ramblings can be of help to others.

3) most of all to share my journey with others and to help me share with my own family.

Great Sites for Information

Kidney Foundation of Canada

Kidney Foundation of Canada

National Kidney Foundation (USA)

National Kidney Foundation (USA)

(I will Post more as I find out more information.)

Here are some great foums and educational sites...

Kidney School
Kidney School
Kidney Friends Forum
Kidney Friends

Also there are some groups on Facebook:
Canadian Kidney Connection
Canadian Kidney Connection

Ontario’s Renal Community
Ontario’s Renal Community

I will add more as they come in. Cora

Tuesday, November 30, 2010

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...


Saturday, November 27, 2010

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.


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)


Friday, November 26, 2010

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.


Here is an interesting article from the Edmonton Journal on marriage and kidney donation.

What an interesting article...I have been married for almost 3 1/2 yrs, together for a total of 5. I now have DH come with me to all my appointments with my nepherologist especially after the dressing down he gave me way back in March. If he can he also comes with me to speak with my nurse at the renal insufficiency clinic. He is also acutely aware of what is going on with me at all times. I am in the process of getting all the testing for a kidney transplant, although to be honest it scares the crap out of me. More so than doing the dialysis. So I wonder what this means for us?

As I deal with the many stressors in my life: work, family and friends; some of which are good. Just because they are great doesn't mean that they aren't stressors. It makes me wonder where things are going...not sure where I am going with this all. I guess I am feeling a bit down today, fighting another infection which is frustrating as hell. I had to miss a shift today because of it. I was running a low grade fever. Was up and down all night using the bathroom. I am not even sure if I am on the right antibiotics, time will tell though.


This is not the first study to show that marriage seems to go along with better health. Historically, studies have found that married people as a group tend to be healthier than singles -- though recent research suggests the health advantage of marriage may be fading.

Photograph by: Photos.com, canada.com

People who get married appear to enjoy better health overall -- and may even be more likely to receive a kidney transplant when they need one, a new study reports.

Researchers found that people with kidney failure who were married or divorced (or separated) were more than 50 per cent as likely to be placed on a waitlist for a new kidney as never-married people. Those who were married were also 28 per cent more likely to receive the organ, relative to single people on the waitlist.
These findings make sense, Dr. Laura Taylor of the Johns Hopkins University School of Nursing told Reuters Health -- "being married tends to give you team support."

Many people on the waitlist for a new kidney are on dialysis, she said, which means they have to follow a complicated diet and medication regimen, and keep up with many appointments. A partner can help them with all of that, Taylor explained, keeping them healthier overall. That, in turn, makes them eligible to join the waitlist, and when an organ becomes available, they're in good enough physical shape to receive it.
With a partner to help, "you remain as healthy as possible on dialysis," said Taylor, who did not participate in the study.

This is not the first study to show that marriage seems to go along with better health. Historically, studies have found that married people as a group tend to be healthier than singles -- though recent research suggests the health advantage of marriage may be fading.
Still, people with spouses tend to live longer, be less depressed, and suffer less from cardiovascular disease. Every year, an average of 90,000 Americans develop kidney failure, at which point they must begin dialysis or receive a kidney transplant -- and if they receive a transplant, married patients tend to fare better than single transplant recipients.

To investigate whether marriage is linked at all to the odds of receiving a new kidney in the first place, the researchers looked at information collected in the U.S. national kidney failure database, focusing on the 3,650 people whose records included information about their marital status.

Approximately 56 per cent of those with kidney failure were married, while 14 per cent were divorced or separated, and 30 per cent were either widowed or had never married.

The authors were unable to include information on single-sex relationships, whether single people had unmarried partners or the quality of marriages, they note in the American Journal of Transplantation.
It's not clear why married or divorced people may fare better when it comes to kidney transplants, study author Dr. Muhammad Khattak of Beth Israel Deaconess Medical Center and Harvard Medical School told Reuters Health in an e-mail.

Previous research has shown married people often have better access to healthcare, and better health overall, which may render them "more qualified candidates for renal transplantation." Although this study focused on kidney transplant, it's possible the same trend is true for other organs, he added.

Of course, it's also possible that healthier people may be more likely to get and stayed married, in which case marriage itself offers no benefit to getting a transplant, noted Khattak, also based at the University of Massachusetts Memorial Medical Center.

Twenty per cent of donated organs came from so-called live donors -- living people who agreed to give up one of their kidneys. Here, too, being married can help, Taylor pointed out, since spouses may offer to donate a kidney. And even if a husband is not a match for his wife, they can enter a kidney "swap," Taylor explained, in which the husband gives his kidney to someone unrelated, which "sets off a chain reaction of donation swapping," and the wife receives a kidney from someone else.

Even people who are divorced may still be close with their spouses and the friends from when they were married, giving them a "complex social network that can be relied on," she added.

Obviously, "we cannot advise people to marry they need renal transplant in the future," said Khattak. However, unmarried people and their doctors can try to ensure they receive quick referrals, good psychosocial support, and education about their health, Khattak said.

"There is nothing a single person can do or not do in terms of moving up the list besides staying healthy," added Taylor.

SOURCE: American Journal of Transplantation, online November 10, 2010.