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World Kidney Day
02/03/2014




World Kidney Day 
this year is on March 13th!

http://www.worldkidneyday.com/

World Kidney Day aims to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.
Get involved!

Celebrated on the second Thursday in March, the mission of World Kidney Day is to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.

World Kidney Day is very important to me personally because I was born with urinary reflux that led to my eventual kidney failure. My family had no idea about kidney diseases as there is no history of it in my family. You don't even give it a second thought until it affects someone close to you. This is why everyone should be tested. Better to be safe than sorry. Keep your blood pressure in check, your weight under control, keep active, drink lots of water, and get regular check ups.

Check out this video by Paul Shay, the National Executive Director of the Kidney Foundation of Canada.

http://www.youtube.com/watch?v=d7vdPo8vdK4

 

If I can't qualify as a Living Donor, why should I register to be an Organ and Tissue Donor?
18/10/2013

So many people do not realize that even with health issues that you can still donate your organs upon leaving this life. If your lungs are not good, you can still donate many other organs as well as tissues. Even if you have AIDS you can still register to be an organ donor as people who have AIDS are also in need of organ donation. Even if you register to be an organ donor, it doesn't necessarily mean your organs and tissues will be donated, but you offer this gift of life in case there is a need for this gift.

What about religion?
Well most religions are FOR organ and tissue donation. The only one that is against it is the Japanese Shinto religion. If you have questions about your own religious or spiritual practice and organ donation, speak with your religious or spiritual leader.

What about my age?
Everyone is a potential organ and tissue donor, regardless of their age. The oldest Canadian organ donor to date was over 90 years of age while the oldest tissue donor was 102. Ultimately the ability to become an organ and tissue donor depends on several factors including the health of the organs and tissue at the time of death.*
*(taken from the Kidney Foundation of Canada's page on organ donation)

Does organ and tissue donation affect funeral services? Can I have an open casket?
Recovery of donated organs and tissue is carried out with surgical skill, respect, and dignity, and does not change the appearance of the body. It does not interfere with funeral practices and no one will know about your gift of life unless your family tells them.*
*(taken from the Kidney Foundation of Canada's page on organ donation)

So where can I register to be an organ and tissue donor?
The Kidney Foundation of Canada has an excellent page covering this for every Province and Territory in Canada:  www.kidney.ca/organ-donation-registries

 

The Kidney Walks are upon us!!
11/08/2013

Throughout the year there are many walks for kidney awareness. Depending on our region they could be in April, May, June, August, September or October. The way to know is to check out http://kidney.ca/walk and select your Province or Territory.

Did you know that 1 in 10 Canadians are affected by Kidney Disease? Did you know that you cannot live without kidneys or some artificial kidney (dialysis)? Do you know how many things can lead to Kidney Disease such as High Blood Pressure, Obesity and Diabetes?

Other conditions that affect the kidneys are:

  • Glomerulonephritis, a group of diseases that cause inflammation and damage to the kidney's filtering units. These disorders are the third most common type of kidney disease.
  • Inherited diseases, such as polycystic kidney disease, which causes large cysts to form in the kidneys and damage the surrounding tissue.
  • Malformations that occur as a baby develops in its mother's womb. For example, a narrowing may occur that prevents normal outflow of urine and causes urine to flow back up to the kidney. This causes infections and may damage the kidneys.
  • Lupus and other diseases that affect the body's immune system.
  • Obstructions caused by problems like kidney stones, tumors or an enlarged prostate gland in men.
  • Repeated urinary infections.
  • Long-term use of medicines that can damage the kidneys. Examples include nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil), and certain antibiotics.

Kidney Disease still is not well enough known. We need to reach out to people to make them aware and to get them checked by their doctors. So let's band together, walk together, support each other and educate the masses.

There are many ways to reach people to tell them about your walk. There are many blogs and social media sites such as Facebook and Twitter as well as Youtube and Vimeo. I know for my area The Kidney Foundation of Canada allows you to make a walk page where you can put in details of the walk or tell your story. For example here is mine for this year: http://kidney.akaraisin.com/windsor13/AngiesTeamKidneyConnection

So start your walk page today, get people together and spread the word! We are all in this together.

 

 
 
April is Organ and Tissue Donor Appreciation Month!
11/04/2013

In fact April even has a week called National Organ and Tissue Donation Awareness Week which this year is April 21-28, 2013.

So I wanted to encourage everyone in Canada to register as an organ donor in your part of the country and share this information with your family. 

So how do you know where to register? 

Well the Kidney Foundation of Canada has a list of organ donor registries here: www.kidney.ca/organ-donation-registries 

Here is a very easy to navigate map - just click your area and it brings you to the information: 
www.organ-donation-works.org/english/organ-tissue-donation

And here you can find answers to frequently asked questions about organ donation: www.kidney.ca/page.aspx?pid=389

Find out the facts! Here are Organ and Tissue Donation - Myths or Facts from the Canadian Society of Transplantation website:  http://www.transplant.ca/pubinfo_orgtiss.htm 

Myth: I am 70 years old and too old to donate anything.
Fact: If you want to donate your organs and tissues after death, you should consider yourself a potential donor regardless of your age or medical history. There are no absolute guidelines when it comes to age, and your medical condition at the time of your death is more important than your past history.

To be an organ donor, you must die in a hospital with your body supported by a ventilator. With a ventilator, oxygen is circulated in the blood so organs can be used for transplant. Neurological determination of death must be completed and the family’s consent obtained before organ donation can occur. Organs that can be donated after death include the heart, liver, kidneys, pancreas, lungs, and small bowel. Living donors can also provide a kidney or part of their liver. On rare occasions, living donors have donated a portion of their lung or small bowel to relatives who were waiting for a transplant.

If you die at home or in the community, you cannot donate your organs. Tissues, however, can be donated because blood circulation is not required. Almost everyone can donate tissues within certain time limits after death. Tissue donors can be referred from chronic care facilities, emergency departments, any patient floor in a hospital, and even from funeral homes. Tissues that can be donated include corneas from eyes, heart valves, bones and skin. Bone marrow is retrieved only from living donors.

Myth: If doctors see my signed donor card they won’t work as hard to save my life.
Fact: Doctors who care for seriously injured patients are not involved with the transplant process. Their only concern is to save lives. Organ donation is only considered after all attempts to save your life have failed, death has been declared, and your family has been consulted regarding your wishes.

Myth: Funeral plans will have to be changed to accommodate organ donation.
Fact: In most cases there will be no need to change funeral arrangements. Organ donation is a surgical procedure that takes place in an operating room. An open casket is still an option following donation should the family wish.

Myth: The donor’s family will be charged the extra costs involved in organ donation.
Fact: In Canada, organ retrieval is covered by the health-care system. There is no cost to the donor's family for this surgical procedure. The family, however, is still responsible for funeral arrangements.

Myth: Having "organ donor" noted on your driver's license or carrying a donor card or provincial health card is all you have to do to become a donor.
Fact: While a signed donor card and a driver's license with an "organ donor" designation are legal documents, organ and tissue donation is always discussed with family members prior to the donation. For that reason, it is very important that you discuss your wishes with your family. At the same time, find out their wishes. Have this discussion – save a life!

Myth: I wear glasses so I can’t donate my eyes.
Fact: Poor eyesight does not prohibit eye donation. Only the cornea, the clear front covering of your eye, is used for corneal transplantation. The sclera (white part of the eye) can be used for research (if you wish) to aid in future treatment of eye diseases. Each month, more than 200 eyes are donated to the Eye Bank of Canada 

Myth: My religion prohibits donation.
Fact: Most of the major religions either openly support organ and tissue donation, or support the individual’s choice at his or her time of death

Myth: Transplants are experimental and rarely successful.
Fact: Generally, transplantation success rates are excellent – between 80-95 per cent of patients are doing well one year after their transplant. Overall, transplant recipients enjoy an excellent quality of life , and are able to work, attend school, travel, and play sports. They are encouraged to engage in all activities that anyone would participate in. 

 

World Kidney Day 2013 Across Canada
11/03/2013

I am always so busy this time of year trying to spread awareness about kidney health and educate people on kidney disease. World Kidney Day is a day I look forward to every year as the whole world on the same day celebrates for the same reason: celebrating life and educating about kidney disease and how to prevent it. Not all cases can be prevented but many caused by diabetes, poor diet and lack of exercise and high blood pressure can lead to kidney disease which can be prevented. 

This is why I am excited the official WorldKidneyDay.org has revamped their website and included a world map! Everyone who submitted their event to that site is listed. 

Check it out! My city's event is on there too! 

http://www.worldkidneyday.org/events/map/?filter_country=Canada&filter_year=2013

World Kidney Day across Canada


Also if you want more information it is on the Kidney Foundation of Canada's website here: http://www.kidney.ca/2013worldkidneyday

So why is World Kidney Day so important?

By focusing on acute kidney injury (AKI), the World Kidney Day Steering Committee hopes to raise awareness of AKI and stimulate discussion, education and policy development leading to improved prevention and treatment of this major kidney disease across the globe.*

So now let me ask YOU, what are YOU doing for World Kidney Day and how are YOUR kidneys?  Think it could never happen to you? Go ahead and take this Kidney Disease Risk Survey: http://fluidsurveys.com/s/KidneyDiseaseRisk/

Also check out the "Am I at Risk?" pamphlet you can read here or pick up at your local office: 

http://www.kidney.ca/document.doc?id=242

* Taken from Kidney Living - Winter 2013 edition which can be seen here: 
http://issuu.com/kidney/docs/kidney_living-winter_2013-_web_-english)

 

Why are Kidney Walks or "Give the Gift of Life" Walks Important to Me?
22/06/2012

There are many walks across Canada throughout the year to raise awareness about kidney disease, educate on how diet and exercise play a role in keeping your kidneys healthy, support kidney research on better care, raise funds for more research, materials and support for patients, and more. Just like so many people do not know all that kidneys do, they also do not know all that The Kidney Foundation of Canada does. 

I love to take part in the walks as much as I can and every year The Kidney Foundation of Canada improves things to make the online donations, as well as the information, easier for people to understand. 

Check them out to see when one is in YOUR area: 

British Columbia
www.kidney.ca/bcwalk


Northern Alberta and the Territories
www.kidney.ca/nab/walk


Southern Alberta
www.kidney.ca/lethbridgewalk


Manitoba
www.kidney.ca/manitoba/RRGS2012


Saskatchewan
www.kidney.ca/sk/walk


Ontario
www.kidneywalk.ca/


Quebec
www.kidney.ca/quebecwalk


Atlantic Canada
New Brunswick, Prince Edward Island, Nova Scotia, Newfoundland and Labrador)
www.kidney.ca/atlantic/walks

 

There are many ways to spread the word about the walk, and many reasons to take part even if you don't have or know anyone with kidney disease. Did you know that you are at risk if you even have high blood pressure or high cholesterol, or are not active, or overweight, or have diabetes? Do you know what puts you at risk? Come out, find out and learn a lot! Do you know someone with kidney disease and want to support their walk? Check out their area, find their page and join their team or sponsor their walk. All the money goes toward research, improvements in care and peer support, and so many other things. 

I can't wait 'til my walk (which is mid-September). I already made a team page and encourage others to get ideas from mine to personalize their own page: Angieskidneyconnection

 

Kidney Stories of Hope Inspires and Raises Awareness across Canada!
12/03/2012

As the Kidney Foundation of Canada tries to raise more awareness about kidney disease and prevention, they are also trying to get people involved. I especially like the "Kidney Stories of Hope campaign". Not only does it raise awareness about experiences with kidney disease but it also inspires people going through it themselves to share their story. The more stories shared, the more the public becomes educated about kidney disease. 

To start your own story, think of something unique and inspiring from your experiences. What do you want to tell the public? Do you just want to share how you have overcome the struggle of kidney disease and encourage others to not give up, or rather you may want to inspire others to register as organ donors? There are many things to write about that can make a difference. But how this campaign is unique is you have a change to win $500 CDN. Also new this year you can even submit a video testimonial instead of written. This should appeal to those who are better at talking about it rather than writing. 

Another unique thing this year with the "Kidney Stories of Hope campaign" is that you can involve your favourite social media sites to get friends and family as well as perhaps coworkers involved to support your story and raise funds for the cause. To start just go to http://www.kidney.ca/storiesofhope and read more about this wonderful opportunity to make a difference and support a cause.

 

Raising Awareness in Small Communities
05/08/2011
This time of year many cities across Canada are having their Gift of Life Walks or else preparing for them. All you have to do is look on the Kidney Foundation website for where the walks are in your location, and what are the dates and times. You can also go to www.kidney.ca/walk to see what website is for your Province (I will be walking in the Ontario one at Colasanti's on Sept 18th). Raising awareness about these walks is easy, however encouraging donations is another story. In larger cities it seems easier but in smaller communities it is harder to get the word out. Some people just have the knack for it but others see all doors close on their face. How do you get people involved in something they are not interested in until it affects someone they love or themselves?

I can relate to that oh so well… Whenever I get donations for the walk in my area the majority come from my website and oddly enough, most are from Americans and people on Facebook. There are a few Canadians but hardly anyone from my family or any of my friends. But why is this? Does this mean they just don't care? Of course not. It’s just that in smaller communities it is harder to come up with the money, and donations  are usually small, only $5 here and there. But a fellow kidney recipient who just had her transplant this year taught me that sometimes it is the area you are canvassing as well as how you come across. Walking with her I did do better and the generosity of people really impressed me. It is important not to get discouraged.

There is another thing about the walk that I hear every year. It is that they don't get a shirt unless they raise a certain amount (was $50 last year in my area). This year at least in my Province it was raised  $100. Their gripe wasn't about donating, it was about the minimum amount that was required. With gas prices and job cuts in the area, times are hard yet they all wanted to wear a shirt because the more people wear the same shirt, the more onlookers will realize we are walking for a cause.

This is just the view of how some see things in a smaller community. Everyone wants to raise awareness but it is hard to get a shirt if you have to raise a minimum of $100, and some people may decide not to walk this year. We don't want to discourage them. This year to get people to the walk who were not going to attend I offered them my shirt even though it will be a little baggy on them. Also there is the idea where they can design their own shirts. This is not only fun but interesting. But some still feel that if everyone wears the same shirts that it is more obvious what cause they are walking for.

We also need something that stands out more. When going door to door for donations for the walk, we need to have the same type of system as March Drive does. With March Drive you have your volunteer badge and your handy little blue folder with the information inside of it.  With the Kidney Walks we only have a piece of paper (if printed from the website) or the brochure that was mailed to us if we are on the mailing list. Many people, at least the ones I have come across, are very suspicious of scams and only give to the March Drive or don't donate at all. They are afraid they are being scammed.

So what are my ideas?
  • I am not good at going door to door so I get someone else to come with me. It keeps me from being too shy.
  • I wear the shirt I got from the previous year's walk (yes I have 3 so far so if my family doesn't raise enough I will let them wear one, even though they’re kinda on the big side for them)
  • I make sure that the form is printed on a good printer, or go to the Kidney Foundation office directly and ask for a brochure. Also I have everything on a clip board to make it easier for donors to put their name if they want a tax receipt mailed to them, and I have paper underneath for notes, such the address on houses that don't want solicitations.
  • I send out emails to family and friends (make sure it is not their work email addresses) to tell them about the walk and invite them to come out. Then at the bottom I add a link to my fundraising page and say if they are interested in donating for my team they are welcome to.
It would be nice to be able to print out posters or something and put them up on light poles but currently there are none (Since writing this up I finally found them farther down on the Ontario Walk page: http://www.kidney.ca/Page.aspx?pid=1410).  I want to get the word out because so many people are not aware of the walks, and even if by this time of year they have already contributed to so many other causes or simply don't have the money, I would at least like to get them out to attend the walk events. The more people show up, the more awareness we would generate due to word of mouth.

My mother didn't want to come out in the past because she felt that it was only for those who have kidney disease, but I got her to come out one year and now she says she will tell people at her work about it. This is excellent! I hope she does! This just shows how people still are not aware of what these walks are for and that EVERYONE is invited! Even if you don't raise any money just come out and support us!

There are also videos on YouTube about the walks! Even if they are from past events the videos are still a means to spread awareness!(see below)

Sometimes I put links to the videos in the emails I send out. Emails are important to me since I live in a small community right on the border near the United States. The problem with this is that most of the channels in my city are from the States, so many people in my city are not even aware of the walks so we have to try that much harder. Some people are lucky and have a lot of family and friends who care about the cause and really they are the ones that carry the rest of us who can't reach our goals. But that doesn't mean we don't care. A lot of us do and the more people we can get to walk the better! Do all you can to raise awareness and any new innovative ideas can be shared with your local Kidney Foundation on ideas to raise more awareness.

Even making your own self-promotional video for your walk helps reach people and gives you something to share with family and friends. Here are some inspiring videos from the Kidney Foundation of Canada:

2011 Give the Gift of Life Walk PSA 2011:




"Be a part of something bigger" (2011 promotional video):




2010 Walk:

So lace up your shoes and come on out and support the Kidney Foundation of Canada today and make a difference in the lives of those with kidney disease!

 

The Call: A kidney is available for you! Do you want it?
21/04/2011

I was doing pretty good on hemodialysis and by my 2nd year on the machine I was pretty accurate with calculating my fluids and coming off the machine right on target with my dry weight. The difference between dry weight and wet weight is that dry weight is supposedly your true weight where as wet weight is that plus all the fluid you have on you that kidneys would normally remove. My potassium was always good as well but I had trouble with my phosphorus. I had given up milk but I still found it hard. I took Tums as my phosphate binder because I had trouble with the size of the phosphate binder pills. I also had to be on four blood pressure pills and take Eprex (epoetin alfa) to keep my hemoglobin from dropping.

Still, over all I was stable and dialysis had just become a normal part of my life. In fact it had become quite routine for me. Wake up in the morning, weigh myself, figure out how much I can drink with my pills, put Emla cream on my arm and cover it with cling wrap and call the taxi cab. Then when the cab was here I would walk out the door with my bag that I bring with me to dialysis with a blanket and headphones and a book and stuff, and be on my way. At dialysis I would weigh myself, set up the tubing and calculations on my machine and then when it was set I would go into the washroom and wash off my arm. The nurses often had trouble with my fistula and we were unable to properly initiate buttonholes because of how much mine rolled. Probably the worst part of dialysis was that. Not the pain as the Emla cream really did help me, but when they missed my arm would be sore right to the nerve for the whole night. Sometimes they didn't miss and it was like a nerve was hit. I wanted so bad to move my arm but I couldn't. I couldn't wait for a transplant but at the same time it had been 6 years on dialysis (both peritoneal and hemo) so I didn't expect it to be any time soon. I had heard at a Symposium in 2002 that the wait for a kidney when you are type O+ was 8 years on average. This was now 2007 so I expected the wait might even be longer than that now. So when I got the call I was not expecting it.

In fact, I was sleeping. I heard the call from the hospital but wasn't really paying attention. I thought it was something about my appointment and I felt I could call them when I woke up. They called my mom's place but she was sleeping as well. Then they called me again and this time I answered because I figured it must be important for them to call back. When I got the call I was surprised - they asked me if I was sure I wanted the kidney because it was not perfect. I won't go into details but it wasn't about the match but other circumstances. I had waited so long that I thought "if I turn it down they might thing I don't really want it" so of course I said yes. After all, I waited a long time and I didn't know how much longer it would take for another match to come along. It was an "extended criteria donor": I never heard that term in my hospital, but that was the term I heard when it comes to donors over the age of 60. My kidney was from a man who was 61 when he passed. Being in my 30's was surprised I would be getting a kidney that was 61 but looking back now I am glad I got that kidney. It was an experience and I learned a lot from it.

I got the call on Sept 29th 2007 and I had the transplant Sept 30th 2007. We went there right away but because of the time it just worked out that way. At first the kidney didn't work and my blood pressure was very low. They said there was lack of blood going to the kidney so it was essentially starving. They told me it was ATN. My hospital had a room with Internet so when I was able to get out of bed I went and researched that and found out that it stood for Acute Tubular Necrosis. I was relieved to read that it is normal for the kidney to work after 4 to 6 weeks when it has ATN so I waited patiently.
 
My scar was smaller than my first transplant and I was surprised since this kidney was larger than the one I had in 1990. Someone told me that the size of the doctor's hand or just the doctor's preference makes all the difference. Some doctors like access more and others try to think about the patient's looks and feelings.

At 7 weeks the doctors came in and apologized for it not working. By then I had already decided that I would not give up. I told them not to give up on me before I had. I think that surprised them because at first I was in a bad mood from the high amount of prednisone and because they had pumped me with so much fluid:  I wasn't able to pee at all, gained 22 lbs from the fluid and my body swelled.

I wasn't walking much, I found it hard with the amount of fluid on me (they were not doing any dialysis, they were waiting for the kidney to take the fluid off) so I had to wear compression stockings.  They hurt me because the measure the ankles to decide on the size but my thighs looked like they belonged to someone larger. The stockings bruised me but they said I had to wear them

I was happy when they had me do dialysis again and I started to feel better. My potassium was low so I needed to eat bananas which surprised the dialysis nurse and she was concerned. But the doctor clarified that in my case my potassium was fine and didn't need to be removed, only the fluid and possibly phosphate.  

Eventually I started peeing a little as they had me on high doses of Lasix (furosemide). Because my bladder had shrunken from not being used for over 4 years I had to go often. I felt for awhile there that I might as well just sleep on the toilet and was glad that it was in my room.

I really wanted a picture of my pee bag to show that the kidney was producing urine but there wasn't enough to really bother taking a picture of. This is a picture of my first walk and at that time you can see there was not too much in the bag. In fact it looks practically empty.

While I was in the hospital during one of the times I was feeling discouraged a fellow transplant recipient and his father came to visit me all the way from Sudbury.

The son Jessie had an appointment and his dad Richard St.Amour kept in touch with me online and by phone and so they decided to stop by. They gave me some words of encouragement and told me to talk to the kidney and name it to encourage it to work. I called my kidney Jessie. I never named my first kidney as I had never heard of doing that before. 

I started to pee a little more as the days went by, and by the time I went home I was able to hold a more normal amount of fluid in my bladder before having to run to the nearest rest room. I still was doing dialysis when I was released from the hospital to go home and my home dialysis unit was shocked when I came to do it there. The hospital didn't tell my local unit that I would be doing dialysis because it was up to me to tell them, but when I told them they thought I was wrong. They called my transplant hospital before they let me on the machine. It was weird that I had to keep asking to be disconnected from the machine to pee and they weren't allowed to take more than 1kg of fluid off me. The doctors wanted to make sure my transplanted kidney was well saturated, yet that my blood was being cleaned while we waited for that kidney to "wake up". I continued to be on dialysis until my visit with the transplant hospital on November 14th: they told me I could finally try going without dialysis, and I have not been on it since.

I was so happy when they told me I could finally stop dialysis!  That also meant I could drink as much fluids as I wanted to. I could eat chips again (but watch the salt and fat) and I could have chocolate again. I had to eat healthy but I had more options. I could finally eat whole wheat again and have tomatoes.  My dad took me out to a restaurant and took a picture. My cheeks were puffy from the Prednisone but not as much as the first transplant.

 
It was so odd being able to have an extra large drink and not limit myself to 200ml per drink and space them out to 5 drinks a day.  I used to have a drink in the morning with pills at the same time as breakfast, then a drink at lunch and then mid-day, then at supper and finally at night with my night time pills.  Now I could finally just drink whenever I was thirsty. I had a hard time keeping up with my fluids however and my creatinine would go up when I would be too "dry".  It took practice to drink enough after not drinking more than a litre for 6 years.

That was in 2007. It is now 2011 and I just was at my local hospital for the National Organ and Tissue Donation Awareness Week (NOTDAW) event, where I was interviewed by 2 local news stations. In one interview in particular I got to talk a little about my transplant and how I felt about it. I am grateful for it because I had a career before I ended up on dialysis, and I wanted to get back to work: last year I finally got a job on contract. Even though I did have some complications post-transplant with being on immunosuppressants, I feel this transplant was worth it. Now I do not have to worry about nurses having trouble with my fistula or how much fluid I have on me. Now my worries are more normal: I worry about money, gas prices, work, and weight. Now I am just like everyone else again!

 

Ongoing Story Part 2: The Switch from Peritoneal Dialysis to Hemo Dialysis
28/02/2011

I was nervous when I was told I had to get a fistula because it was better than a PermCath. I really had hoped I would either get a transplant before then, be able to go back on Peritoneal Dialysis, or stay with the PermCath. I didn't want to have two 14 gauge needles stuck in my arm three times a week every week. I was not a fan of needles in the first place. But with my own research I knew they were right. Sure there is less chance for infection but what I really noticed was that the flow was better through a fistula than through a PermCath and I could get more fluid removed in my scheduled time on the Hemo Dialysis machine.

I had scars on my body (and my neck from parathyroid removal) but none on my arms and legs. This would be more visible to people but through the years I had become less concerned with my looks. There is no way I would have wanted a fistula when I was a teenager but I was now in my thirties and thought more logically instead of emotionally. I researched and thought things through more like a medical professional and realized that this was for my health and if other people are bothered by my arm that they can just look the other way.

So it was time for me to go from this Catheter to Fistula:

Hemodialysis PermCathAV Fistula for Hemo Dialysis

So I went through the surgery and was told how to take care of it such as not carrying anything on that arm to cut off the flow and to not wear shirts with tight sleeves or sleep on that arm and no tight watches. Especially with fluid gain on dialysis it is best to not wear a watch on that arm at all. I also was told to exercise my fistula by squeezing a small ball in the palm of my hand. The surgery was easy to go through but I was fascinated by how they do this and why. They join the artery and vein in your arm together so that the blood flow increases so that it will enlarge it enough to be able to use the 14 gauge needles. Veins normally can't take that large of a size. Going through this was easier than explaining to people what happened to me.

So here is my first ever fistula not long after the surgery where I still had the sutures in:

http://i.imgur.com/xDFFw.jpg

It looked like someone bit me. I guess it all depends on the method the surgeon chooses as some are done in a straight line. I guess this method gives more room to work with in a small space. However I had dialysis in the morning before the surgery and was really dry which when you are lacking fluids your veins tend to be smaller. The fistula stopped working 10 days later on a weekend. I didn't realize it had quit as I was checking it when I remembered at pill time and I was showing a neighbour that it vibrates but when they touched it it was not doing that. That is when I said, "Uh oh it is not working!" and turned around and called the dialysis unit and left a message. I guess I was supposed to go to the Emergency Room in this case but I didn't think of that and by Monday it was too late.

 

So I had to get a 2nd surgery for another fistula which was again like a bite mark and they have to give it time to mature before they can use it. It has to be a certain size and have good flow before it would be adequate for use.  So between the first surgery and the 2nd and the fistula finally working good enough to have the PermCath removed, it had been a little over a full year but eventually it was working and had become my new access.

Here is my arm with the 2nd fistula and the squeeze ball. The larger part is not typical and just where they did the most work by the old fistula. The access is from there to my elbow and in this picture you can see where the needles go. 

http://i.imgur.com/Gvc5R.jpg

The way the fistula forms (straight line, or curvy, deep or on the surface) all depends on your body. It develops sort of like how a hose will go where ever it goes if you are not holding it. You can't predict where it will go. My fistula tended to like to roll which made it hard to cannulate (stick the needles in) and I was going to try button hole but the staff said I would never be able to do it on my own arm with how mine was. But I insisted since I did research that told me it was better (like putting in earrings) so they started it. The rule is that you have to have the same cannulator for the first 6 times, however staffing schedules didn't really make this easy and I only had the same one the first 2 times. I never did actually get to stay with buttonhole even though I felt if I had the courage and experience to do it myself it would have worked because I am always with me. The fear for me wasn't just sticking needles of that size into my body but mainly of screwing it up. I was not a nurse and it took me a year to get up enough courage just to be able to give myself my Aranesp shots in my belly for my Anemia. How would I ever be able to get up the courage to establish my own buttonholes?

Even though I put the needle part in their hands I did learn how to set up my own machine with the tubing and the bags and calculate and put in my numbers based on my dry and wet weight and how much I planned to drink while on the machine or how much ice I would have and continued to do my own research to learn why using an exercycle was beneficial.  I read in an article once that it helps the blood flow and helps the machine remove 10% more of the toxins from your body. Plus I found that it helped my legs since I used to get cramps real bad on the machine.

http://i.imgur.com/W47cU.jpg

 

I guess cramps are caused by a couple things: Trying to take so much fluid off the body in the appointed time (worse when you have a lot on you) and fluid being pulled out from the tissues (medical term is changes in plasma osmolality and/or extracellular fluid volume) after the machine has taken all the excess out of the blood already. This is why my cramps happened always in the last hour for me. I didn't just get them in my legs however. I also go them on my left side of my stomach exactly where I had my Peritonitis oddly enough. I figure it had something to do with the scar tissue here but I am not sure.   I hated cramps and sometimes they would get so bad that my fiance would hold my hand and the nurses would come over and pause the Ultrafiltration Rate until the cramps subsided.

Just like everything I have been through, at first it is an adjustment but after while it is like any other day. I had been doing so well (especially compared to when I first started hemodialysis) that sometimes if I was on an irregular dialysis shift that the other patients would think that I was a nurse. I didn't look sick and I was doing well. I was stable and was not expected the call for a kidney transplant when it happened. 

But we will talk about my transplant experience next time. 

Ongoing Story: The Switch from Peritoneal Dialysis to Hemo Dialysis
10/12/2010

Where did I leave off.. oh yeah! I had peritonitis.

So at first I didn't know what was wrong because my dialysis bags were clear. I had been having bowel issues so I thought perhaps my pain was related to that. I mean, I knew the signs to look for of peritonitis but I didn't have any of those listed. No fever, no cloudiness in the drain bags, no nausea, nothing like that. I just had the mild pain that was located in the area of my bowels but I had no trouble passing anything. No trouble at all. In fact I started to wonder if my dialysis fluid was absorbing into it... The doctor said no, that doesn't happen.

So I went to my local kidney clinic and they did a test. They found out that I did in fact have peritonitis but they said it was treatable and put medication into my bags. I continued to do Peritoneal Dialysis at home but the pain got worse. I went back and they said it had not improved when it should have. They have me a script to go pick up some of the medication to inject into my bags at home. They were huge sized syringes of medication that had to be frozen and then thawed before using. The medication was called cefazolin and it was 90ml I put into my dialysis bad each time I did my exchanges. I was doing the night time Cycler but because I was having trouble draining I was back to 4 times a day. I had to call my supplier to get more of this type of bags since I mainly just had them for the machine.

It seemed to help for the first day or two but after that I was getting worse. I would go in, they would do test, and then they would send me home. There was no reason it should be as bad as it was. It should be getting better. Then why wasn't it?

I ended up in the ER when I had a dermatologist appointment for a wart on my face. I was in a lot of abdominal pain but didn't say anything to them of course since it wasn't in their field. But when it came time to leave I felt so bad I knew there was no way I could take the bus back home. I had left the building trying to hold my pain in and will it to calm down, but it wasn't getting better so I had to go back in.  I felt embarrassed asking them to call an ambulance. I mean, no dermatologist wants to have to call an ambulance. I wondered what people would think but I had no choice. I don't remember much of the ride. I think that time was when I was admitted and shared the room with 3 other ladies.

The lady right beside me felt so bad for me because every time I had to do my dialysis exchange I was in so much pain. I felt bad for the ladies as I remember all the times I was in the hospital and heard someone else moan in pain and would be annoyed that I had to listen to it for hours. This time I was one of those moaners. I was in so much pain that I just could not hold it in. I swear that pain is the worst pain in the world. (A year later a dialysis nurse would disagree with me telling me that child birth is worse but I don't think you can compare if you haven't felt it yourself). I am not a complainer but this was bad. I don't like to bring attention to myself but there gets to be a point in time when you just cannot hold the pain in any longer.

I believe I was in the hospital a couple times during this one case of peritonitis. The time with the ladies they gave me a strong dose of the medication and I felt better. But it didn't last. I eventually started feeling worse again but I didn't want to complain.

I only remember the things that stand out but forget the exact time line. I know I went to the doc a lot but so many times I was sent back home with medication.So I stopped going back and tried to just do as they told me: treat it at home. My friend was worried about me and would come over to get me to at least eat oatmeal. I didn't realize it but I was losing a lot of weight. I went down from 63.5 kg / 140 lbs down to 51.3 kg / 113 lbs.  All I knew is that I was too sick to sleep lying down or to eat at the table: I ate on the floor and I slept on one side of the couch. Looking back I can't believe it was so bad and that it got to that point. He got his neighbour to drive me to emergency and I got admitted again. This time I slept over a table and was hooked up to oxygen to help me breathe. I was in a room in the Cardiac Care Unit where they monitored me closely. 

I had so much fluid on me that I was having trouble breathing. It was not apparent how much weight I had lost until they switched me to Hemo Dialysis and got a lot of the fluid off.  Because of the pain, everything that went on was a blur. I don't remember when they realized they had to take out my PD Catheter and put in a Hemo Dialysis PermCath in my chest to dialyze from. All I remember is that I wanted the pain to stop. I guess they had to clean out my peritonium and it was really badly scarred from all the infection. They said I didn't see any fibrin in my bags because it was all sticking to the catheter on the inside and staying there accumulating. I woke up and I had a catheter in my chest and was told it was time to do Hemo Dialysis. I was scared as I had never done it before in my life. The only memory I had of Hemo Dialysis previous to that was when I went to Kidney Camp and seeing the girls cramp and it looked painful to me. I thought the machine caused the cramps. I had so much to learn and this was just the beginning of my journey...

 

It wasn't so bad as I was already in pain and it did make my breathing easier. Eventually I was able to go home. That was when I realized that none of my clothes fit me and that I was no longer a size 12 but was now a size 3! I guess I had become malnourished. A few months later my body told me that was correct as I started losing a lot of my hair.

I did Hemo Dialysis for a few months at the hospital before I eventually got transferred over to what is called "Self Care". But before I got to this point I befriended a dialysis nurse who always took care of me. Janine always took care of people and when I was having a hard time breathing and needed to go to the ER she stayed with me even though her shift was done. I feel she deserves this recognition so this is why I have mentioned her first name. She stood by me instead of leaving me alone to wait. I forget if this was yet another time I had to be admitted or what. I think it was. Like I said, much of it was a blur of pain. But the point is that she stayed with me. A year after I started doing Hemo Dialysis and getting better I heard that nurses were scared for me, especially when I went to Self Care and was the sickest person there. I went in with my oxygen tank and a wheelchair and did 3 1/2 to 4 hours of dialysis 3 times a week. I heard that I was so sickly looking, skinny and in need of oxygen. I look back and it is like talking about another person. That is, until I started writing this blog. The emotion is still there as I realize the severity of how things were.

But as the fluid came off, I was able to come off the oxygen and walk on my own again as they regulated what my true weight is vs. all the fluid weight I had. That was hard because I had so much fluid on me and lost so much weight that I could not even tell them what my weight should be! I kept saying I should be 140 lbs but I was obviously very wrong. It took awhile to get it all right. They realized I had too much fluid on me and was wrong about my dry weight, so they would take off as much as they could per session but I would get so dizzy and get cramps. I would especially cramp where the Peritoneal Catheter was. I figure that was where all the scar tissue was. But eventually I was better and even got to learn to set up my own machine and got worked up for a fistula.

If you look closely you can see the scars on my arm. My first fistula by the wrist failed after 10 days so I had to get surgery for a second one. You can see the second one in the picture as well but it is not developed yet and small so I did Hemo Dialysis through my PermCath for over a year. I was lucky I never got any infections with the PermCath. I took good care of it at home.

I gradually found things to like about Hemo Dialysis. In center Hemo Dialysis you get to talk to others going through the same thing as you. Many want to be left alone but across from me was a lady who really liked to talk. She also liked to change my TV channel by accident (the remotes were all the same and the TV's hung from the ceiling) but I learned a lot from the people on the Monday, Wednesday, Friday shift that I was on.  I learned to keep my fluids in check as I could only drink one litre or else I would have to have too much taken off and cramp. I learned tricks of sucking on ice or chewing gum to keep your mouth from becoming too dry. I also learned about buttonhole from a guy who was cannulating his fistula with that method. Hemo Dialysis had become a part of my life like Peritoneal Dialysis was and, even though I was nervous about being stuck with needles once the fistula matured, I was fine with doing dialysis while I waited for a kidney. 

More about the fistula next time.

The Journey Continues ... Rejection and Peritoneal Dialysis
25/11/2010

I enjoyed a normal life for 11 years: I finished high school and completed a certificate in College, I was living on my own, taking part in a band and hanging out with friends. I also worked at a food processing plant for 9 years. I loved the position I held in 2000 as a Can Seam Technician as it was a position that was normally only given to people who went through special schooling but I could do the job better than others who had been sent to school.

I was achieving a lot and felt proud of myself. I had dreams of saving up enough money to pay off my College loan and then saving up for a house and a car. High hopes typical of someone in their 20's. I had so much going on and was so determined to reach my goal that I put work before my health. I missed doctor appointments -- I would have had to miss a whole shift, and I was only limited to a certain amount of shifts I could miss. I felt I was stable anyways and did not worry... until 2000.

I had a feeling that my time was growing short. No pain or anything but I just "knew" somehow. I was starting to be more tired but I felt it was just exhaustion from taking on so much. I rode my bike an hour to work, worked 12 hours, and then rode back home. I ate, slept, and would repeat the whole process all over again for two weeks until swing shift. Then I would sleep in to help switch my shift to the exact opposite schedule and be ready to work two days later. Besides, this was just a seasonal job and I had winters off. But then I took on a winter job within the same company as a Tote Filler in the Freezer section of the Food Processing Plant.: more money coming my way to put towards my College Loan.

I thought I had it all planned out perfectly..... But it never works out as planned.

In the winter of 2000 my co-workers started to be frustrated with me. I had gotten slower at the job of Tote Filler that I had been so good at. I noticed myself that my tote was overflowing faster than normal. I thought perhaps it was the machine: turned out it was me unable to keep up. They moved me to the slowest vat and eventually changed me to Tote Maker instead (where you wrap the boxes after they are filled with frozen veggies). I was able to do that so it was fine. I was already up for full time (not seasonal anymore) as of the new year because of how well I did as a Seam Tech and I was not willing to face that maybe I was tired for another reason.

I kept telling myself, "But I don't feel pain", "I am just tired because I work so much and don't get enough sleep maybe". But I wanted to be sure. I went to my appointment with my Nephrologist and found out that my hemoglobin was only in the 70's and that I was rejecting my kidney. I don't remember what my creatinine was but cried as they told me I would be back on dialysis by the spring. I had to turn down my full time position and had to also get IV Iron and blood transfusions.

I finished working in November 2000: the promotion was still there if I wanted it but it would not be until the spring. My hemoglobin dropped to 69. I was stubborn: one day I tried to walk (still did not have a car) to Shopper's Drug Mart for my medication instead of having it delivered and I managed to walk only a block before I sat down and cried. I could not believe how exhausted I was. I just could not do it. It felt humiliating to not be able to do a simply thing as walking. I looked perfectly fine so I couldn't convince anyone that I could not walk to the store. The man I was living with at the time sure didn't understand and called me lazy and would not help. I ended up going back home and having them deliver my medication. It was a turning point for me.

I started dialysis in the early part of the year 2001 and they delivered my supplies to the house. I was lucky that I still lived in a house and could set up a room close to the front door.
 
I could not take the promotion at my job because I was doing dialysis four times a day and the job shift would be no shorter than eight hours, with no place to do the dialysis ( their nurses’ station was open concept). There was no way to do it but be at home. I lived on the money I had saved up but had to pay high bills and the College Loan in monthly intervals. I eventually went on Employment Insurance and then from there went on welfare while I waited to get on Disability. It took nine months even though they said it would only take six.

I trained on Nocturnal Peritoneal Dialysis and that worked out better for me as I had my days free. My hemoglobin was getting high and I had to take injections in my stomach to keep it at a good level as the kidney no longer made the stuff that told my bone marrow to produce red blood cells to carry oxygen to the muscles. I started working at a Hot Deli as I still did not want to be out of work. I was afraid of having a gap on my resume. They showed no understanding of how slow I worked and my coworkers would say right in front of customers, "Why don't you just stay home. You are in the way here. You have disability anyway! You don't need to work here!"

My depression got worse and I felt I did not fit anywhere. I took myself off the transplant waiting list and went for counseling. I wanted to be sure I would be in the right frame of mine for a transplant. I was stable on the night time dialysis and my energy was improving: at one point the department manager even said that I was working as fast as everyone else and he was impressed.

I was glad to be on dialysis and knew I could keep working like this until I got a kidney. I was not even sure I wanted a kidney just yet because I was worried it might fail faster than the last one. I liked not being on the immune suppressing medication and I liked that I could still work. On Peritoneal Dialysis I had to watch my fluids but not so bad. It was flexible. I could manage. I dated a few guys and they did not mind the dialysis. I loved some and I lost some. I was still living a normal life.

        

My life was still work-oriented but I did find the time to create a kidney patient website. So between work and my site I was pretty busy. They say once on dialysis you have no life but I made dialysis work around my life. I refused to stop. I kept doing Peritoneal Dialysis for four years and then got peritonitis.

But I will save that for the next blog.


The Beginning of My Journey
19/10/2010

I am Angie...

...and I have lived in the same city all my life but spent a great deal of my childhood in Toronto. Not for visiting however, but for medical reasons.

I was born sick but no one knew what was wrong with me. The doctor just said I probably had the flu or something and gave me medication. It was discovered when I was nine that my blood pressure was 230/180 and it was affecting my vision. After being in my local hospital I was sent to Toronto Sick Kids Hospital where it was discovered that I had Kidney Disease. If it had been caught sooner I would have only needed minor surgery to fix urinary reflux on one side but because it had gone on so long it was too late to save either of my kidneys.


 

By the time I was sixteen I had both kidneys removed. When I started dialysis I had been falling asleep in class. I guess it was the toxins in the blood that made me feel so weak. I have no idea what my hemoglobin was but I never was put on anything for it. This was back in 1990. I started on Peritoneal Dialysis but was lucky I didn't have to be on it long. Only two months later I got the call for a transplant. I was happy because my high school was not very cooperative with me having to do dialysis four times a day and because of that I was only attending half days.

When I had my transplant it was like day and night. I had always been sick and lethargic and really don't remember most of my childhood but now for the first time in my life I had loads of energy and even an appetite! My creatinine the day after the transplant was 329 and four days later it was already as low as 79! I was doing great! This new kidney was such a good match! My parents were very pleased but the combination of an appetite and prednisone sure made me gain a lot of weight. I gained 15 kg (32 lbs) in 28 days and had "chipmunk cheeks".


But transplants aren't a cure. There are medications that keep you from rejecting the transplant (prednisone is one of those) and also there is a change of rejection. A month after my transplant I had an acute rejection. My creatinine went up from 86 to 126. The good thing is that an acute rejection is not like a chronic rejection and the transplant can be saved. My creatinine had gone up to 178 before they were able to get things under control again and it started to go back down again. Phew!

This transplant lasted eleven years and I lost some weight and looked great and healthy and joined a band, finished high school and even went on to college and worked a few jobs. I was finally "normal". 

It is important to realize that everyone's situation is different and this is just my personal story. I was so glad I got this transplant because even though it can be a bumpy road, it is much better than being on dialysis at the age of sixteen.

Six years later you can see I looked like anyone else. People did not realize I was a transplant recipient. It was nice to no longer be "sick".

I had my first transplant 20 years ago now. I will write an update in the next few blogs.

 

 


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