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

Thursday, December 16, 2010

So I guess I should let you know what happened at the specialists....

not much other than I had a complete and utter meltdown.  I am not handling my stress very well and have just found out that all the toxins in my body from being in predialysis isn't helping.

I am having difficulties trusting people and so I shut everyone out. I have done it in the past as whenever I let anyone in I ultimately got hurt and it is something I am dealing with right now. Not sure how to deal with my family and the moment...or even who to trust within that family. According to my one mother, I have a "new" and and an "old" family; now that I have this "new" family I don't need to be with the "old" family or some such nonsense.

I really would love to talk about it all but a publication ban on part of the story is in place so I could get arrested for contempt.  Hmmm almost sounds like an idea..lol. Suffice it to say that have a very strange family to deal with and somedays I wish I didn't have to.

This has become my theme song for my life lately...

 Bon Jovi's "Its My Life"


ITS MY LIFE
Uploaded by mmessina1992. - Watch more comedy videos and sitcoms.

Live in Chicago 2007

Bon Jovi - It's My Life (Live In Chicago 2007)
Uploaded by Schutzengerl1205. - Watch more music videos, in HD!
Here are the lyrics...

Bon Jovi's It's My Life
Songwriters: Bon Jovi, Jon; Martin, Max; Sambora, Richard S;

This ain't a song for the brokenhearted
No silent prayer for the faith departed
And I ain't gonna be just a face in the crowd
You're gonna hear my voice when I shout it out loud

It's my life
It's now or never
I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life

This is for the ones who stood their ground
For Tommy and Gina who never backed down
Tomorrow's getting harder, make no mistake
Luck ain't even lucky, gotta make your own breaks

It's my life
And it's now or never
I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life

You better stand tall
When they're calling you out
Don't bend, don't break
Baby, don't back down

It's my life
It's now or never
'Cause I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive

(It's my life)
And it's now or never
I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life!

Monday, December 13, 2010

I am off to see the specialist today.

I am a bit nervous as I haven't seen since March when the whole kidney failure diagnosis happened. I am not looking forward to this at all. I don't like the new nurse and I don't like my doctor....inspires a lot of confidence there huh? I am also still quite tired from the trip although I had an awesome time. I guess I am just tired. Everything is so up in the air right now. I will let everyone know how it went.

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...

Cora

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.

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

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.

Cora

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.

Cora

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.


Tuesday, October 5, 2010

The 2010 Kidney Care Conference: Exploring Alternatives for Kidney Care

The Kidney Foundation is planning a conference for patients and their families.  The conference is also open to healthcare professionals who are interested in attending, but the conference topics are geared towards what patients have asked for and patients may approach you to ask questions.  

Conference details:
Conference date: Sunday, November 14th, 2010
Time: 9:00am to 3:30pm
Location: Chateau Louis Conference Centre in Edmonton, 11727 Kingsway Avenue                
Early bird registration fee: $10 per person before October 14th @5pm
Standard registration fee: $20 per person after October 14th
To register contact: Kim Kearns, Coordinator, Kidney Care Services
kkearns@kidney.ab.ca or T. 780-451-6900 Ext 222
Schedule: Speakers are subject to change
9:00AM   Registration 

9:45AM   Welcome

10:00AM Dr. Robert Pauly - Home/Nocturnal hemodialysis

11:00AM Refreshment break

11:15AM Jeannine Christopherson - Sexual Health & Chronic Illness

12:15PM Lunch

1:00PM   Dr. Verna Yiu - Pediatric research news

1:00PM   Lori Therrien  - Caregiver Support tools & resources

2:00PM   Refreshment break

2:15PM   Ina Clark - Reflexology

3:00PM   Closing & draws


Yeah a conference for patients and families, hopefully I can get some answers here. I feel as if I am alone in this struggle.

Cora

Monday, October 4, 2010

An update....

So I had the surgery 3 weeks ago (Sept 10, 2010), not sure how I am feeling over it. I went to the Renal Insufficiency Clinic to talk with Marnie, the nurse that I have started to build a rapport with only to discover that Marnie is no longer my nurse, it is now Angie. We talked about all my symptoms and I was told that I could have a temporary hemo-dialysis although by the  time it is done I could start the PD. This is all so very frustrating. I really find this whole process distressing. No one is telling me anything and I feel so lost in the whole process.

Cora

Tuesday, August 17, 2010

An update....

I had my ultrasound yesterday. I am in more pain than usual today. I also had mega heartburn most of yesterday as well. Today is the day I go to the Grey Nun's Hospital to talk to them about the surgery. I will update everyone on when that happens.  I got the confirmation call from the transplant team for the 25th of August which is an education workshop (?) session on what is transplant and if it is right for me...should be interesting.

Cora

Friday, August 13, 2010

Feeling really frustrated right now....

I think it is because I am being hit with everything at once...

As you know, Tuesday I go to the Grey Nuns to have my presurgery appointment for the peritoneal dialysis tube placements. I am really trying not to think about it right now. I know it is a good thing, just I get nervous and concerned when I think of it. So trying to think in the NOW.

Then I got hit with two whammies on different fronts. One is from the Renal Transplant team the other was about an ultrasound.

I was expecting information regarding the transplant time but it appears I have to attend some sort of teaching class which is a mandatory "first step" for which I am not automatically put on the list. It is only the start of my workup process. So it is August 25 at 8:30 am at the U of A. Two questions...why so fricken early and why always at the U of A? Doesn't the Royal Alexandria have a renal unit as well.?

I then get a phone call from the ultrasound place. Apparently it is believed that the ultrasound will tell why I am pain. Not sure how, i have had this done before with no answers. I think it is just a waste of time. Again it is on August 23rd at 7:45 AM. Again what is whit the fricken early mornings?Again near the U of A, why? There are perfectly good ultrasound places on the northside (Northgate comes to mind) that would be easier for me to go to. So far it has bee either the U of A or St. Albert. I hate the ultrasounds because I am in so much pain afterwards, usually for a few days.  This is really pissing me off as Dr. Caldwell should be talking with me before making decisions.

I am tired of being poked and prodded without explanation.  I have to have monthly blood work done, for which I got badly bruised.  I am just so frustrated at not having anweres.

Thursday, August 12, 2010

Halve salt to avoid the doctor


Elizabeth McMillan
Northern News Services
Published Monday, August 9, 2010

SOMBA K'E/YELLOWKNIFE - A little bit of salt can cause a lot of problems.
Because of its links to high blood pressure, and in turn strokes, heart disease and kidney disease, Health Canada recently recommended Canadians cut their sodium intake in half.

NNSL photo/graphic

Stanton's employee Gloria Arnburg, left, and food security worker Melanie Keevik, right, discuss cooler space for traditional food in Stanton's Tuk store on Jan. 28, 2010. - photo courtesy of Marc Arseneau
But eliminating salt from food isn't as easy as putting down the shaker before a meal. Only a quarter of our daily intake of sodium comes from what people sprinkle on their meals, according to a report released last month. It's the sodium already in packaged food, not the seasoning put on after, that contributes the most to health problems like high blood pressure.
Melanie Keevik, a food security worker in Tuktoyaktuk with Health Foods North, said often people reach for processed food instead of cooking from scratch and don't think twice about sodium.

"All the canned food, the frozen pizzas, even the wieners and bacon, processed food. It's just so much easier for people to cook than it is for them to make a stir fry," she said.
But she said people should look for healthier alternatives.
"Harvesting your own traditional foods like geese and quail and caribou, and picking your own berries ... it's a better option.

There's no salt on the berries, or on any of that meat," Keevik said. "You add your own (salt) to it later when you're going to eat it, maybe. But there's no added preservatives, artificial this and that."

She said more education about how sodium affects people could help change habits.

"People when they realize what it is that they're consuming, then later on they notice that's too much and they try to cut down. They never realized it before," she said. "People will just eat something and ignore calories, ignore the sugar, the salt."

But like keeping an eye on sugars, "Sodium content is so high in the food that you buy in the stores that you don't even need to add salt to it," she said.

Elsie De Roose, the territorial nutritionist with the Department of Health and Social Services, thinks it's about time people started paying attention to sodium.

"The message is try and make as much food yourself as you can. For all those other good reasons, too - for cost and health. More fruits and vegetables, more cereals, more dairy, more fresh meat."

She recommended people ask their grocery store managers about low-sodium products and check sodium content both when buying food and in restaurants.

In its July report, a Sodium Reduction Group commissioned by Health Canada in 2007 found most Canadians consume 3,400 milligrams of sodium per day, far above the recommended 1,500 milligrams. By cutting the average amount of sodium consumed in half, there would be a 13 per cent reduction - or 23,500 fewer - cases of cardiovascular disease per year. The report translated this into a savings of almost $3 billion in health case costs across the country.

The report recommended most Canadians reduce their sodium intake to under 2,300 milligrams, equivalent to less than a teaspoon of salt, though the recommendations vary for age groups. It also recommended improving the way food is labelled so sodium content is clearer.

De Roose said that would be helpful, as many people may not be aware just how much salt they're consuming.

But even with more information, old habits may be hard to break.

"People are used to sodium and it's in a lot of food products for taste and preservation," De Roose said.
"These days people's lifestyles are so busy, it's hard to give recommendations to people to lower sodium, there's so much in packaged food."

Hmmm food for thought....

Cora

Monday, August 9, 2010

Common Causes of Chronic Kidney Disease (CKD)

There is no single cause of chronic kidney disease. Some forms of the disease may be inherited, while others are acquired.

The two most common causes are diabetes and high blood pressure. Others are glomerulonephritis (nephritis), polycystic kidney disease, urinary tract obstruction, reflux nephropathy, and drug- or medication-induced kidney problems. Bacteria such as E. coli and bacterial infections, such as strep throat, are other culprits.

Other problems can affect the kidneys. Some of these are kidney stones, Alport syndrome, Fabry disease, and Wilms’ tumor.

Click on the links below for more information on some of the causes of chronic kidney disease, or visit the Publications section of this website to download or order brochures from your local Kidney Foundation branch office.

What is Chronic Kidney Disease (CKD)?

Kidney disease describes a variety of disease and disorders that affect the kidneys. Most disease of the kidney attack the filtering units of the kidneys—the nephrons—and damage their ability to eliminate wastes and excess fluids.

Chronic kidney disease (CKD) is defined as the presence of kidney damage, or a decreased level of kidney function, for a period of three months or more. CKD can be divided into five stages, depending on how severe the damage is to the kidneys, or the level of decrease in kidney function.
Usually, kidney disease starts slowly and silently, and progresses over a number of years. Not everyone progresses from Stage 1 to Stage 5. Stage 5 is also known as End-Stage Renal Disease (ESRD). It may also be called end-stage renal failure. It is important to remember that end-stage refers to the end of your kidney function (your kidneys are working at less than 15% of normal), not the end of your life. To sustain life at this stage, dialysis or kidney transplantation is needed.

When the kidneys fail, wastes and fluids accumulate in your body and you need dialysis treatments (to clean your blood either by machine or in your abdomen), or a kidney transplant. Dialysis and kidney transplantation are known as renal replacement therapies (RRT) because they attempt to “replace” the normal functioning of the kidneys.

Sometimes kidney failure occurs rapidly and this is called acute kidney failure. This may be a result of injury, infection, or other causes. For acute kidney failure, dialysis treatment may be urgently needed for a period of time, but kidney function often recovers.

I am in Stage 4 of CKD and entering into Stage 5 as we are preparing for dialysis and transplantation.

Cora

Signs and Symptoms That May Indicate Kidney Disease

Warning Signs

Kidney disease usually progresses silently, often destroying most of the kidney function before causing any symptoms. Therefore, people at risk of developing kidney disease should be evaluated regularly. These people include those with diabetes, high blood pressure or blood vessel diseases, and close relatives of people with hereditary kidney disease.

Sometimes even people with serious kidney disease may not have any symptoms. That is why a blood or urine test may be necessary to check for kidney problems. However, the signs and symptoms listed below may indicate kidney disease and if they are present, a medical assessment to check out the kidneys would be advisable.

  • High blood pressure (hypertension)
  • Puffiness of the eyes, hands and feet
  • Passage of bloody, cloudy or tea-coloured urine
  • Presence of protein in the urine (uremia)
  • Excessive foaming of the urine
  • Frequent passing of urine during the night
  • Passing less urine or difficulty passing urine
  • Fatigue
  • Loss of appetite or weight
  • Persistent generalized itching 
I had no ideas as this was happening most of my adult life. The high blodd pressure was recent and we believe a result of taking Effexor for depression and anxiety.


Important Safety Information for EFFEXOR XR

Suicidality and Antidepressant Drugs

Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, teens, and young adults. Depression and certain other psychiatric disorders are themselves associated with increases in the risk of suicide. Patients of all ages who are started on antidepressant therapy should be monitored appropriately and observed closely for clinical worsening, suicidality, or unusual changes in behavior. EFFEXOR XR® (venlafaxine HCl) is not approved for use in children and teens.
  • People taking MAOIs should not take EFFEXOR XR.
  • All patients taking antidepressants should be watched closely for signs that their condition is getting worse or that they are becoming suicidal, especially when they first start therapy, or when their dose is increased or decreased. Patients should also be watched for becoming agitated, irritable, hostile, aggressive, impulsive, or restless. Such symptoms should be reported to the patient's doctor right away.
  • Before starting EFFEXOR XR, tell your doctor if you're taking or plan to take any prescription or over-the-counter drugs, including migraine headache medication, herbal preparations, and nutritional supplements, to avoid a potentially life-threatening condition.
  • EFFEXOR XR may raise blood pressure in some patients. Your blood pressure should be controlled before starting treatment and should be monitored regularly.
  • Taking EFFEXOR XR with aspirin, nonsteroidal anti-inflammatory drugs, warfarin, or other drugs that affect coagulation may increase the risk of bleeding events.
  • Mydriasis (prolonged dilation of the pupil of the eye) has been reported with EFFEXOR XR. You should notify your physician if you have a history of glaucoma or increased eye pressure.
  • When people suddenly stop using or quickly lower their daily dose of EFFEXOR XR, discontinuation symptoms may occur. Talk to your doctor before discontinuing or reducing your dose of EFFEXOR XR.
  • Pregnant or nursing women shouldn't take any antidepressant without consulting their doctor.
  • Until you see how EFFEXOR XR affects you, be careful doing such activities as driving a car or operating machinery. Avoid drinking alcohol while taking EFFEXOR XR.
  • In clinical studies, the most common side effects with EFFEXOR XR (reported in at least 10% of patients and at least twice as often as with placebo) were constipation, dizziness, dry mouth, insomnia, loss of appetite, nausea, nervousness, sexual side effects, sleepiness, sweating, and weakness.
If you have noticed the bolded/highlighted items are the same signs and symptoms as kidney failure. I also bolded the migraine headache medications as I was using meds for migraines. 

Arg! I am so tired but I can't sleep...

I took a shower because my skin was so itchy...now it is worse.  I just want to just scratch and scratch. Nope not allergies...could be mosquito bites but not all over. Unfortunately this is one of the symptoms of late stage renal failure. I have not been feeling well for a while so when I have a "good day" I end up overdoing it becasue it has been a good day

I HATE THIS! I am usaully a very busy and on the go person, jumping from one thing to the next. Now it seems I walk the dog it is too much. Or I go to celebrate friends achievements (twice in one day) or I just need to grocery shop. I am exhausted for several days afterward. It is frustrating!

Then there are people who are sunshine and lollipops about it and say if you stay positive it will help.  Well screw that! I have had enough of this! I need people that will understand and be patient with me. If I can't do something then don't harass me about. It isn't that I don't want to it is that physically I am unable to and no amount of wishing otherwise is going to make it any better.

I just want to get the dialysis and then a transplant. More on that later.

Cora

Saturday, August 7, 2010

Hmm I hadn't realized that I hadn't posted on what exactly peritoneal dialysis is...

So here is an explanation...

How PD Works

In PD, a soft tube called a catheter is used to fill your abdomen with a cleansing liquid called dialysis solution. The walls of your abdominal cavity are lined with a membrane called the peritoneum, which allows waste products and extra fluid to pass from your blood into the dialysis solution. The solution contains a sugar called dextrose that will pull wastes and extra fluid into the abdominal cavity. These wastes and fluid then leave your body when the dialysis solution is drained. The used solution, containing wastes and extra fluid, is then thrown away. The process of draining and filling is called an exchange and takes about 30 to 40 minutes. The period the dialysis solution is in your abdomen is called the dwell time. A typical schedule calls for four exchanges a day, each with a dwell time of 4 to 6 hours. Different types of PD have different schedules of daily exchanges.
Illustration of a patient receiving peritoneal dialysis.
One form of PD, continuous ambulatory peritoneal dialysis (CAPD), doesn’t require a machine. As the word ambulatory suggests, you can walk around with the dialysis solution in your abdomen. Another form of PD, continuous cycler-assisted peritoneal dialysis (CCPD), requires a machine called a cycler to fill and drain your abdomen, usually while you sleep. CCPD is also sometimes called automated peritoneal dialysis (APD).


Getting Ready for PD

Whether you choose an ambulatory or automated form of PD, you’ll need to have a soft catheter placed in your abdomen. The catheter is the tube that carries the dialysis solution into and out of your abdomen. If your doctor uses open surgery to insert your catheter, you will be placed under general anesthesia. Another technique requires only local anesthetic. Your doctor will make a small cut, often below and a little to the side of your navel (belly button), and then guide the catheter through the slit into the peritoneal cavity. As soon as the catheter is in place, you can start to receive solution through it, although you probably won’t begin a full schedule of exchanges for 2 to 3 weeks. This break-in period lets you build up scar tissue that will hold the catheter in place.
The standard catheter for PD is made of soft tubing for comfort. It has cuffs made of a polyester material, called Dacron, that merge with your scar tissue to keep it in place. The end of the tubing that is inside your abdomen has many holes to allow the free flow of solution in and out.
Illustration of two peritoneal catheters.

Two double-cuff Tenckhoff peritoneal catheters: standard (A), curled (B).

Types of PD

The type of PD you choose will depend on the schedule of exchanges you would like to follow, as well as other factors. You may start with one type of PD and switch to another, or you may find that a combination of automated and nonautomated exchanges suits you best. Work with your health care team to find the best schedule and techniques to meet your lifestyle and health needs.

Continuous Ambulatory Peritoneal Dialysis (CAPD)

If you choose CAPD, you’ll drain a fresh bag of dialysis solution into your abdomen. After 4 to 6 or more hours of dwell time, you’ll drain the solution, which now contains wastes, into the bag. You then repeat the cycle with a fresh bag of solution. You don’t need a machine for CAPD; all you need is gravity to fill and empty your abdomen. Your doctor will prescribe the number of exchanges you’ll need, typically three or four exchanges during the day and one evening exchange with a long overnight dwell time while you sleep.

Continuous Cycler-Assisted Peritoneal Dialysis (CCPD)

CCPD uses an automated cycler to perform three to five exchanges during the night while you sleep. In the morning, you begin one exchange with a dwell time that lasts the entire day.

Customizing Your PD

If you've chosen CAPD, you may have a problem with the long overnight dwell time. It's normal for some of the dextrose in the solution to cross into your body and become glucose. The absorbed dextrose doesn't create a problem during short dwell times. But overnight, some people absorb so much dextrose that it starts to draw fluid from the peritoneal cavity back into the body, reducing the efficiency of the exchange. If you have this problem, you may be able to use a minicycler (a small version of a machine that automatically fills and drains your abdomen) to exchange your solution once or several times overnight while you sleep. These additional, shorter exchanges will minimize solution absorption and give you added clearance of wastes and excess fluid.

If you've chosen CCPD, you may have a solution absorption problem with the daytime exchange, which has a long dwell time. You may find you need an additional exchange in the mid-afternoon to increase the amount of waste removed and to prevent excessive absorption of solution.

Preventing Problems

Infection is the most common problem for people on PD. Your health care team will show you how to keep your catheter bacteria-free to avoid peritonitis, which is an infection of the peritoneum. Improved catheter designs protect against the spread of bacteria, but peritonitis is still a common problem that sometimes makes continuing PD impossible. You should follow your health care team’s instructions carefully, but here are some general rules:
  • Store supplies in a cool, clean, dry place.
  • Inspect each bag of solution for signs of contamination before you use it.
  • Find a clean, dry, well-lit space to perform your exchanges.
  • Wash your hands every time you need to handle your catheter.
  • Clean the exit site with antiseptic every day.
  • Wear a surgical mask when performing exchanges.
Keep a close watch for any signs of infection and report them so they can be treated promptly. Here are some signs to watch for:
  • Fever
  • Nausea or vomiting
  • Redness or pain around the catheter
  • Unusual color or cloudiness in used dialysis solution
  • A catheter cuff that has been pushed out
Equipment and Supplies for PD

Transfer Set

A transfer set is tubing that connects the bag of dialysis solution to the catheter. When your catheter is first placed, the exposed end of the tube will be securely capped to prevent infection. Under the cap is a universal connector.

When you start dialysis training, your dialysis nurse will provide a transfer set. The type of transfer set you receive depends on the company that supplies your dialysis solution. Different companies have different systems for connecting to your catheter.

Connecting the transfer set requires sterile technique. You and your nurse will wear surgical masks. Your nurse will soak the transfer set and the end of your catheter in an antiseptic solution for 5 minutes before making the connection. The nurse will wear rubber gloves while making the connection.

Depending on the company that supplies your solution, your transfer set may require a new cap each time you disconnect from the bag after an exchange. With a different system, the tubing that connects to the transfer set includes a piece that can be clamped at the end of an exchange and then broken off from the tubing so that it stays on the transfer set as a cap until it is removed for the next exchange. Your dialysis nurse will train you in the aseptic (germ-free) technique for connecting at the beginning of an exchange and disconnecting at the end. Follow instructions carefully to avoid infection.
Close-up drawing of patient holding his catheter and transfer set in his left hand and a Y-tube in his right.  Only the patient’s lap and hands are visible.  Labels indicate the catheter, transfer set, disposable cap, clamps, a tube running from the fresh bag of solution, and a tube running to the drain bag.

Transfer set. Between exchanges, you can keep your catheter and transfer set hidden inside your clothing. At the beginning of an exchange, you will remove the disposable cap from the transfer set and connect it to a Y-tube. The branches of the Y-tube connect to the drain bag and the bag of fresh dialysis solution. Always wash your hands before handling your catheter and transfer set, and wear a surgical mask whenever you connect or disconnect.
Drawing of a male patient sitting in chair, performing peritoneal dialysis exchange.  Labels indicate fresh bag of dialysis solution, clamp, transfer set, disposable tubing, and drain bag.

During an exchange, you can read, talk, watch television, or sleep.
The first step of an exchange is to drain the used dialysis solution from the peritoneal cavity into the drain bag.  Near the end of the drain, you may feel a mild “tugging” sensation that tells you most of your fluid is gone.

The first step of an exchange is to drain the used dialysis solution from the peritoneal cavity into the drain bag. Near the end of the drain, you may feel a mild “tugging” sensation that tells you most of your fluid is gone.
After the used solution is removed from your abdomen, you will close or clamp the transfer set and let some of the fresh solution flow directly into the drain bag.  This flushing step removes air from the tubes.

After the used solution is removed from your abdomen, you will close or clamp the transfer set and let some of the fresh solution flow directly into the drain bag. This flushing step removes air from the tubes.
The final step of the exchange is to refill the peritoneal cavity with fresh dialysis solution from the hanging bag.

The final step of the exchange is to refill the peritoneal cavity with fresh dialysis solution from the hanging bag.

Dialysis Solution

Dialysis solution comes in 1.5-, 2-, 2.5-, or 3-liter bags. A liter is slightly more than 1 quart. The dialysis dose can be increased by using a larger bag, but only within the limit of the amount your abdomen can hold. The solution contains a sugar called dextrose, which pulls extra fluid from your blood. Your doctor will prescribe a formula that fits your needs.

You’ll need a clean space to store your bags of solution and other supplies. You may also need a special heating device to warm each bag of solution to body temperature before use. Most solution bags come in a protective outer wrapper that allows for microwave heating. Do not microwave a bag of solution after it has been removed from its wrapper because microwaving can change the chemical makeup of the solution.

Cycler

The cycler—which automatically fills and drains your abdomen, usually at night while you sleep—can be programmed to deliver specified volumes of dialysis solution on a specified schedule. Most systems include the following components:
  • Solution storage. At the beginning of the session, you connect bags of dialysis solution to tubing that feeds the cycler. Most systems include a separate tube for the last bag because this solution may have a higher dextrose content so that it can work for a day-long dwell time.
  • Pump. The pump sends the solution from the storage bags to the heater bag before it enters the body and then sends it to the disposal container or drain line after it’s been used. The pump doesn’t fill and drain your abdomen; gravity performs that job more safely.
  • Heater bag. Before the solution enters your abdomen, a measured dose is warmed to body temperature. Once the solution is the right temperature and the previous exchange has been drained, a clamp is released to allow the warmed solution to flow into your abdomen.
  • Fluid meter. The cycler’s timer releases a clamp to let the used dialysis solution drain from your abdomen into a disposal container or drain line. As the solution flows through the tube, a fluid meter in the cycler measures and records how much solution has been removed. Some systems compare the amount of solution inserted with the amount drained and display the net difference between the two volumes. This lets you know whether the treatment is removing enough fluid from your body.
  • Disposal container or drain line. After the used solution is weighed, it’s pumped to a disposal container that you can throw away in the morning. With some systems, you can dispose of the used fluid directly by stringing a long drain line from the cycler to a toilet or bathtub.
  • Alarms. Sensors will trigger an alarm and shut off the machine if there’s a problem with inflow or outflow.
Drawing of patient sleeping in bed.  A peritoneal dialysis cycler is on the dresser beside the bed.  Labels indicate the heater bag sitting on top of the cycler, two bags of fluid beside the cycler, a drain line running from the cycler to the bathroom, and parts of the cycler, including the pump and fluid meter.

Cycler. A cycler performs four or five exchanges overnight, while you sleep.

Testing the Effectiveness of Your Dialysis

To see if the exchanges are removing enough waste products, such as urea, your health care team must perform several tests. These tests are especially important during the first weeks of dialysis to determine whether you’re receiving an adequate amount, or dose, of dialysis.

The peritoneal equilibration test (often called the PET) measures how much sugar has been absorbed from a bag of infused dialysis solution and how much urea and creatinine have entered into the solution during a 4-hour exchange. The peritoneal transport rate varies from person to person. If you have a high rate of transport, you absorb sugar from the dialysis solution quickly and should avoid exchanges with a very long dwell time because you’re likely to absorb too much solution from such exchanges.

In the clearance test, samples of used solution drained over a 24-hour period are collected, and a blood sample is obtained during the day when the used solution is collected. The amount of urea in the used solution is compared with the amount in the blood to see how effective the PD schedule is in removing urea from the blood. For the first months or even years of PD treatment, you may still produce small amounts of urine. If your urine output is more than several hundred milliliters per day, urine is also collected during this period to measure its urea concentration.

From the used solution, urine, and blood measurements, your health care team can compute a urea clearance, called Kt/V, and a creatinine clearance rate (adjusted to body surface area). The residual clearance of the kidneys is also considered. These measurements will show whether the PD prescription is adequate.
If the laboratory results show that the dialysis schedule is not removing enough urea and creatinine, the doctor may change the prescription by
  • increasing the number of exchanges per day for patients treated with CAPD or per night for patients treated with CCPD
  • increasing the volume of each exchange (amount of solution in the bag) in CAPD
  • adding an extra, automated middle-of-the-night exchange to the CAPD schedule
  • adding an extra middle-of-the-day exchange to the CCPD schedule
For more information about testing the effectiveness of your dialysis, see the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) fact sheet Peritoneal Dialysis Dose and Adequacy.

Compliance

One of the big problems with PD is that patients sometimes don’t perform all of the exchanges prescribed by their medical team. They either skip exchanges or sometimes skip entire treatment days when using CCPD. Skipping PD treatments has been shown to increase the risk of hospitalization and death.

Remaining Kidney Function

Normally the PD prescription factors in the amount of residual, or remaining, kidney function. Residual kidney function typically falls, although slowly, over months or even years of PD. This means that more often than not, the number of exchanges prescribed, or the volume of exchanges, needs to increase as residual kidney function falls.

The doctor should determine your PD dose on the basis of practice standards established by the National Kidney Foundation Dialysis Outcomes Quality Initiative (NKF-DOQI). Work closely with your health care team to ensure that you get the proper dose, and follow instructions carefully to make sure you get the most out of your dialysis exchanges.


Conditions Related to Kidney Failure and Their Treatments

Your kidneys do much more than remove wastes and extra fluid. They also make hormones and balance chemicals in your system. When your kidneys stop working, you may have problems with anemia and conditions that affect your bones, nerves, and skin. Some of the more common conditions caused by kidney failure are fatigue, bone problems, joint problems, itching, and restless legs.

Anemia and Erythropoietin (EPO)

Anemia is a condition in which the volume of red blood cells is low. Red blood cells carry oxygen to cells throughout the body. Without oxygen, cells can’t use the energy from food, so someone with anemia may tire easily and look pale. Anemia can also contribute to heart problems.

Anemia is common in people with kidney disease because the kidneys produce the hormone erythropoietin (EPO), which stimulates the bone marrow to produce red blood cells. Diseased kidneys often don’t make enough EPO, and so the bone marrow makes fewer red blood cells. EPO is available commercially and is commonly given to patients on dialysis.

For more information about the causes of and treatments for anemia in kidney failure, see the NIDDK fact sheet Anemia in Kidney Disease and Dialysis.

Renal Osteodystrophy

The term “renal” describes things related to the kidneys. Renal osteodystrophy, or bone disease of kidney failure, affects up to 90 percent of dialysis patients. It causes bones to become thin and weak or malformed and affects both children and adults. Symptoms can be seen in growing children with kidney disease even before they start dialysis. Older patients and women who have gone through menopause are at greater risk for this disease.

For more information about the causes of this bone disease and its treatment in dialysis patients, see the NIDDK fact sheet Renal Osteodystrophy.

Itching (Pruritus)

Many people treated with peritoneal dialysis complain of itchy skin. Itching is common even in people who don’t have kidney disease; with kidney failure, however, itching can be made worse by uremic toxins in the blood that dialysis doesn’t adequately remove. The problem can also be related to high levels of parathyroid hormone (PTH). Some people have found dramatic relief after having their parathyroid glands removed. But a cure that works for everyone has not been found. Phosphate binders seem to help some people; others find relief after exposure to ultraviolet light. Still others improve with EPO shots. A few antihistamines (Benadryl, Atarax, Vistaril) have been found to help; also, capsaicin cream applied to the skin may relieve itching by deadening nerve impulses. In any case, taking care of dry skin is important. Applying creams with lanolin or camphor may help.

Sleep Disorders

Patients on dialysis often have insomnia, and some people have a specific problem called sleep apnea syndrome. Episodes of apnea are breaks in breathing during sleep. Over time, these sleep disturbances can lead to “day-night reversal” (insomnia at night, sleepiness during the day), headache, depression, and decreased alertness. The apnea may be related to the effects of advanced kidney failure on the control of breathing. Treatments that work with people who have sleep apnea, whether they have kidney failure or not, include losing weight, changing sleeping position, and wearing a mask that gently pumps air continuously into the nose, called nasal continuous positive airway pressure (CPAP).

Many people on dialysis have trouble sleeping at night because of aching, uncomfortable, jittery, or restless legs. You may feel a strong impulse to kick or thrash your legs. Kicking may occur during sleep and disturb a bed partner throughout the night. Theories about the causes of this syndrome include nerve damage and chemical imbalances.

Moderate exercise during the day may help, but exercising a few hours before bedtime can make it worse. People with restless leg syndrome should reduce or avoid caffeine, alcohol, and tobacco; some people also find relief with massages or warm baths. A class of drugs called benzodiazepines, often used to treat insomnia or anxiety, may help as well. These prescription drugs include Klonopin, Librium, Valium, and Halcion. A newer and sometimes more effective therapy is levodopa (Sinemet), a drug used to treat Parkinson’s disease.
Sleep disorders may seem unimportant, but they can impair your quality of life. Don’t hesitate to raise these problems with your nurse, doctor, or social worker.

Amyloidosis

Dialysis-related amyloidosis (DRA) is common in people who have been on dialysis for more than 5 years. DRA develops when proteins in the blood deposit on joints and tendons, causing pain, stiffness, and fluid in the joints, as is the case with arthritis. Working kidneys filter out these proteins, but dialysis is not as effective. For more information, see the NIDDK fact sheet Amyloidosis and Kidney Disease.

Adjusting to Changes

You can do your exchanges in any clean space, and you can take part in many activities with solution in your abdomen. Even though PD gives you more flexibility and freedom than hemodialysis, which requires being connected to a machine for 3 to 5 hours three times a week, you must still stick to a strict schedule of exchanges and keep track of supplies. You may have to cut back on some responsibilities at work or in your home life. Accepting this new reality can be very hard on you and your family. A counselor or social worker can help you cope.

Many patients feel depressed when starting dialysis, or after several months of treatment. Some people can’t get used to the fact that the solution makes their body look larger. If you feel depressed, you should talk with your social worker, nurse, or doctor because depression is a common problem that can often be treated effectively.

How Diet Can Help

Eating the right foods can help improve your dialysis and your health. You may have chosen PD over hemodialysis because the diet is less restrictive. With PD, you’re removing wastes from your body slowly but constantly, while in hemodialysis, wastes may build up for 2 or 3 days between treatments. You still need to be very careful about the foods you eat, however, because PD is much less efficient than working kidneys. Your clinic has a dietitian to help you plan meals. Follow the dietitian’s advice closely to get the most from your dialysis treatments. You can also ask your dietitian for recipes and titles of cookbooks for patients with kidney disease. Following the restrictions of a diet for kidney failure might be hard at first, but with a little creativity, you can make tasty and satisfying meals.

The National Kidney Foundation has a brochure on Nutrition and Peritoneal Dialysis, which gives general guidelines on calorie and nutrient intake. See the “Additional Reading” section for contact information.

I know it is a lot of information to read...imagaine how I felt hearing it :)

Cora

Another post from my main blog....

I went to see my nephyrologist this morning....

I got news I wish I hadn't got...my creatine levels (measures protein taht is uses to develop muscle mass, the by-product creatincine is what is measured) are up again, which means kidney function is down. Back in march I was at 16%, when i went in to get a special x-ray done I was at 15 % and now I am at 14 %. What does this mean? It means that I am looking at dialysis and/or transplant almost immediately. I have already gone to the PD (Peritoneal Dialysis) Clinic at the U of A Hospital. Now I am being referred to the transplant unit.

So I have two types of transplants to look at: cadaver and live. Cadaver is an organ from someone who has already passed away and we are most aware of this one as most organ transplants depend on this. However with a kidney, peopel can survive with one all their lives. In fact I have done quite well with only one and it was only in the year that it went downhill.

My hope is that friends would be interested in looking at organ donation.  This is a scary time for me as I look forward to celebrating my 3rd wedding anniversary, I am pretty sure this is not what DH signed up for you know. He knew I had kidney issues but they were stable at the time...now they are not.

Wow I was not prepared for this at all.

Cora

Another post from my main blog....

An Health Update.....

Okay...last Wednesday I posted a cryptic status on Facebook, (link will only work for those who are on friend list) regarding a doctor's visit.  I needed time to process the information and to talk with close family and friends before posting the information.  Some of you know that I have been battling kidney disease for a number of years and in fact had a nephrectomy (kidney removal) 11 yrs ago.  I have been monitored for a number of years by a specialist and my GP.  Well for some reason, not sure why and we could speculate all we want, however back in 2007 my kidney was function between 50 and 75% (depended on blood pressure).  My kidney is now functioning at 16%.  I am looking at dialysis in a matter of months, not years as well as looking at a transplant in years as opposed to decades. 

I appreciate everyone giving me the space that both of us needed in order to deal with the initial shock of this latest news.  I now know why I have been so tired and unable to deal with a whole lot.  I, again, am asking for some patience and understanding as we make decisions as to treatment and how to proceed.  We need all the support we can get through this.

I know it never rains but pours...thank you again.

Cora
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Originally Posted on my other blog....


Well I went to the PD (Peritoneal Dialysis) Clinic to determine if I am eligible for it. turns out I am a good candidate for the procedure. so now it getting Dr. Caldwell to "hear" me o this. He wants to wait until I have only 10% function...I am now at 15%. The big thing to get used to would be doing dialysis 4 times a day. Oh and the dialysis nurse knew my godfather Ike Brydlt. That was a shocker :) Ike did more for kidney transplant (live non-relative donation) more than I was aware of.

You see back when I was 17 or 18, I woke up one morning to his picture splashed all over the morning newspaper (the Edmonton Sun). You see Ike had placed an add for a kidney as he was on hemodialysis, PD was not thought of or it was in its infancy. I am talking 1982-1983 here. I didn't even know that he was that sick as no one had ever told me. I think I remembered being shocked and angry. Shocked because he looked horrible and angry that he could do that, just advertise for a kidney like he could buy one ore something.

Now I am glad that he had the courage to do the story that he did. it brought organ donation and dialysis to the forefront. Now it is almost routine to be able to do a non-relative, live kidney donation and there is the peritoneal dialysis which makes thinks so much better for renal patients who are dealing with kidney failure.

One thing that did get explained to me, was once a patient gets a kidney infection, it is really difficult to get rid of the infections. So my repeat infections were not my fault. i wasn't doing anything wrong at all. Just that the because the kidney has so many tubes, nooks and crannies as it were, that it is hard to get rid of an infection once one has developed. Add in that it took 3 months for the first infection to be diagnosed. My doctor thought I had pulled my back muscles because I was working as a nanny at the time and I was lifting a one year old a lot.

It was finally my boyfriend, who convinced me to get a second opinion and that was when I found out it was a baaaaaaad kidney infections.

So here is hoping we can get things done. I am hoping we can convince Dr. Caldwell sooner rather than later as I will need 4 weeks to heal after the catheter is put into the peritoneal (the "belly") cavity.  Wow sponge baths fora month...hubby brightened up on that thought...lol. The pain has been getting me down as well has almost no energy. I want my life back! So i am hoping this works :)

Cora

Friday, August 6, 2010

Some insight into what happens when the kidney is failing...

Symptoms of Advanced Kidney Failure:
  • Loss of appetite
  • Nausea and/or vomiting
  • Fatigue/sleepiness
  • Skin is really itchy
  • twitching (can be like restless leg syndrome as well)
  • a metallic taste in the mouth (doesn't help the loss of appetite situation)
These are signs of far advanced chronic kidney disease (CKD). They often indicate that the person is accumulating dangerous amounts of waste products because the kidneys are not working to excrete them. Patients with these symptoms are often in need of dialysis (artificial kidney treatments).

I have absolutely no control over how tired I am or how I feel day to day.There are days where I literally can only eat saltines (the unsalted ones, I know an oxymoron if I have ever heard one...lol) because that is all my stomach can handle. Add in the IBS-D it is pure hell.

I have had people say just ask God (Higher Power) to take it all away and it will go away.  Man how I wish that could happen! The only thing I can really ask for is a way of dealing with the fear and anxiety to be lifted or lightened so i don't spiral into a deep depression. I am only 45 and have much in my life right now.

Cora

Thursday, August 5, 2010

I was watching Global News and there was a story about a fellow from Australia having a bucket list.

 Someone was wonderful and found me the link to the website...100 Things.com.au. It is a great site, check it out. So I decided to write my own bucket list.


Here is my bucket List...

  1. To participate in an inquiry over what happened in the Downtown Eastside of Vancouver. This was a big part of my life and I want answers.
  2. I would love to meet Sharon Osbourne. She is a strong lady and not afraid to go foe what she wants. I mean she is married to Ozzy who must be a difficult person to deal with. I have always admired her and really enjoyed her on celebrity Apprentice.
  3. Bret Michael's is another person I would like to meet. The front runner of Poison has had to fight a lot of health issues. He fought a great fight on Celebrity Apprentice as well.
  4. I want to write a book about my life and my struggles and intersperse it with knitting and crochet patterns.
  5. I would love to sky dive.
  6. To travel all over Europe and the UK, to enjoy the time of my life.
  7. To reconcile with my children (we have had a real tough go of it).
I will add more as I figure out what I want for my bucket list.

Cora

Sunday, August 1, 2010

Great article on Sodium Intake....

Canadians' sodium intake leaving a bitter taste

Posted By TYLER BALL, FOR THE WHIG-STANDARD

Posted 2 days ago
Canadians can save $2 billion in health-care costs if they reduce their consumption of salt by one-third, says a study released Thursday by the Sodium Working Group, a government-backed research effort.
Michael Adams, a member of the working group, said sodium reduction is one of the biggest challenges to the country's health, especially since over 77% of it comes from the manufactured food we eat, and not out of a shaker. 

"It's already in the food," said Adams, a professor in the department of pharmacology and toxicology at Queen's University. 

"It's insidious, it's sneaking up on us. We don't even know its there." 

Excess sodium is a cause of heart attacks, strokes, congestive heart failure, kidney disease and stomach cancer, killing between 10,000 and 15,000 people and costing the health-care system at least $2 billion annually. 

"Measurements suggest that Canadians are consuming 3,400 milligrams of sodium per day," said Adams. "The recommended amount is closer to 1,500 mg per day, which is quite a difference."
The researchers recommend that Canadians reduce their intake to 2,300 mg per day by 2016.
"(It's) not all the way down to the recommended amount, but a good compromise," Adams said.
Adams hopes Canada can follow a model successfully implemented in Finland and the United Kingdom, where the government asked for a reduction of salt in processed foods and manufacturers obliged.
"(It's) a system-wide approach that has benefited people enormously," he said. 

"Finland (did) it quite a long time ago and they've shown a remarkable improvement in the incidence and prevalence of cardiovascular disease."


However, the recommendation is voluntary. No manufacturer will be forced to reduce the salt in its products but Adams said the market will call for it. 
"Once there's a behaviour that has educated people into wanting this, every single company should be abiding by this reduction," he said. 

"All consumers ... need to be made aware so they can provide the feedback to reinforce this behaviour."
Health Canada will track the progress of manufacturers on a website, and recommend the most salt-conscious producers. 

The sodium working group wants the reduction to appear in every aisle of the grocery store, not just in foods that are traditionally sodium-rich. 

"No longer will you have to only just pick out certain foods ... all foods will have a reduction in salt," he said, adding it won't be easy, due to the versatility of salt and the many ways it's used in food production.
"It's there for flavour reasons, for manufacturing reasons and bacterial reasons," said Adams. "It's not just for the simple flavour enhancement that many people think." 

"To remove it is not trivial." 

Another problem is the way consumers have acquired a taste for salt because of its prevalence. 

"(Producers') fear is people are going to say, 'This doesn't taste very good', " he said. "This is why the target is 2016, it's not tomorrow, (so) we can do a gradual reduction." 

Hopefully this will wean consumers away from salt. 

"I would argue that six years is actually a long time for adjusting your diet," said Adams, "(but) if we can meet that target for 2016, then all the power to us." 

"At least, let's get onboard with this strategy." 

tball@thewhig.com

I agree on all levels since being told to reduce my sodium intake to 1300-2000 mg/day, I have noticed a huge craving for all things salty. Most days are okay but their is the odd day it is super difficult. Why have companies been allowed to put in the amounts of sodium that they do for so long? We have to have certain amount of sodium, potassium and phosphorus but for the renal patient to much is  NOT a good thing as the insufficient working kidney cannot process these complex minerals (hubby is shuddering at this usage as he his a chemist/physicist). So we are looking at reductions by 2016 and they are voluntary...hmm.


Let me know what you think.


Cora