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Weight Loss Exercise

Measured and Sustained Action

One of the things that I have really learned with my daughter and her Kidney disease is that we have up times and down times and we need to really take advantage of both.

Kidney Disease But Still Super Active

taylorOur daughter Taylor, when she is feeling good likes to go on long bike rides and hikes and has lots of energy for that but then she does need to have her downtime and will be quiet and read or watch TV for the next day or so. Taylor has a far more balanced life than most people and it is because she wants to always do stuff but knows that the downtime has to happen and that sleeping and eating are critical for her health.

I learn a lot from Taylor, and you can too

I find that once I start moving I don’t want to stop. I like to be active with my hockey, weightlifting, training for my Kidney March, and anything else we can find to do. The trouble is that there is no urgency, I don’t schedule a lot of outings with the kids we just run with it so if I miss a day of exercise then it is no big deal. But it should be.

Really we need to schedule our exercise and activities or they probably won’t get done. There is a finite number of hours in the day and some things just always get in the way. Work, eating, sleeping, household and family chores, lots of stuff. If we don’t plan our fun, active stuff then it will not happen.

Downtime – Very Important

On the other side is our quiet time. I am worse for this and feel bad about it but we all need that time just to relax and recharge. Sitting in the backyard listening to the neighbourhood and sipping some kind of drink, meditative times just reflecting on where we have been and where we are going, and less active activities where we just get to hang with the family and friends and be truly present instead of thinking about the next thing that we are going to do (A whole blog post is sitting in that statement).

And sleep. I wish I was the guy that could thrive on 5 hours sleep a night but certainly I am not. I need my sleep and I count this as really the majority of my downtime. I listen to a quiet podcast, maybe read, and then fall asleep for hopefully 8 hours so that I am fully rested and tackle another great and fantastic day.

These are the things that my daughter Taylor really does well and mostly far better than me. She does all the active things, and then bakes, reads, sleeps, hangs out with friends and even talking to the dogs. All the things a kid should do but it is all measured.

Taylor’s Balanced Schedule

We were talking to a newspaper reporter a few months ago and she was asking what kind of difficulties that we have with Taylor and her Kidney Disease and I told her that it was not a big deal. My wife looked at me like I was crazy and then started listing off all the things we need to do; hospital visits, vitamins, shots, blood work. When I heard it that way it sounded like a very tough lifestyle. But realistically I think that our of everyone in the house my daughter really has everything together much better than any of the rest of us do.

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Weight Loss Exercise

Kidney March 2013


Kidney March 2013As many of you know my daughter Taylor has Kidney disease and it has been a bit of a struggle over the last year and a half since her initial diagnosis. We are of course coping and very thankful that we are living now, in a time when I can donate a kidney to my daughter as opposed to 50 years ago when this would have been impossible.

Even though we believe we have a way to help Taylor, many people are not nearly as fortunate as us. In Canada alone 100,000 people are waiting for a Kidney transplant and the line just gets bigger and bigger.

Often when faced with issues like this we can all feel powerless, not knowing what to do and how we can make a difference. But my wife and I have found a way and that is by taking part in Kidney March 2013.

What is the Kidney March?

During the weekend of September 6-8 Michelle and I will be taking part in the annual Kidney March. The Kidney March is a 100 kilometer walk over three days where we get an opportunity to do a couple of things.

First we get to raise money for a cause that is near and dear to our family and that is Kidney research, of all the major diseases that researchers are trying to cure, Kidney Disease is one with the best chance of being cured in the next few years.

Secondly we will be raising awareness of Kidney Disease. Thousands, actually millions of people suffer from Kidney disease but sadly most people don’t realize it until it is too late and they need to go on dialysis as this is a very silent disease with almost no symptoms until it is too late.

How Can You Help?

Kidney March 2013

Kidney March 2013

I have never been any kind of fundraiser in the past but I am super passionate about raising the money and awareness for Kidney Disease and this is a passion that I hope you will help me to share.

I am asking for two things. Please please please donate anything that you can. Be it $5 or $500 any amount will add up to make a huge difference, also I ask that you share this message with your friends and coworkers. If nothing else they can get a simple blood test, a creatinine test that can show if there is a heavy load on the Kidneys and how well they are working.

Thanks so much. You can visit my information page for the Kidney March now and if you have any questions or comments please let me know in the comments below.

Thanks, Bill.

Kidney March 2013, 5.0 out of 5 based on 1 rating

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Weight Loss Exercise

My Daughters Kidney Disease


You may have noticed that I have not been as active this year as I usually am on the blog and there is one pretty big reason. My daughter is sick with Chronic Kidney Disease and I think I am finally ready to write about it, come out and talk about it. This is the first time that I am writing about my daughter and her Kidney disease and what is going on within our family as we struggle and work through this.

Early last year my daughter Taylor, who is now twelve, went for a normal annual physical and her blood testing came back with higher than normal levels of Creatinine. This was not too much of a worry to our family doctor as she was just slightly out of range but he still sent my wife and daughter to a pediatrician and some more testing. While time went by and we waited for the appointment a few weeks later I did a little Googling around and found that this could be a sign of some kind of kidney issue but it was really vague to us at the time.

My wife and daughter went to the pediatrician a couple of times and then got sent to a specialist and then finally to our children’s hospital for more testing and everyone was very indecisive about what was happening.

Getting the Diagnosis

Finally at one meeting last November that just Taylor and my wife Michelle went and had more testing and the doctor let them know that Taylor has Nephronophthisis and would have her kidneys fail and need to have a kidney transplant. Not good news and I still feel bad that I was not at the doctors appointment.

Nephronophthisis is a genetic condition so Michelle and I are both carriers of a bad gene and because of this there was a 1 in 4 chance that either of our kids would inherit the two bad gene halves. Taylor did, we think Jaiden or son did not. This form of kidney disease affects kids between the ages of 8 and 14 and the odds are really low, about 2 kids out of 100,000 would get this, and of course you don’t catch it, you are born with it and it just shows as you get older.

How Our Family is Dealing with Kidney Disease

Happy TaylorSo since last November we have been learning a lot and had a lot of hard times with Taylor’s kidney disease. Taylor is a bit scared of course like any 12 year old should be. My wife Michelle is always looking far ahead and nervous about what the future holds, and I am day to day. Every day that Taylor feels well I am happy and every day that she is feeling unwell I feel terrible for her.

So far since the Nephronophthisis diagnosis Taylor’s kidney function has dropped from about 45% to 28.6% and as we watch the kidney function drop we get more and more nervous but the doctors stay level headed and are keeping us informed on the next steps for us and Taylor and meeting with us on a monthly basis. Here in Calgary Alberta we have a Nepherology clinic at the Alberta Children’s Hospital and so each monthly meeting there we meet with a psychologist, a dietician, a pharmacist, and the kidney doctor. They are fantastic and I feel like we are in great hands.

So far we have not had to change Taylor’s diet at all (no sodium restriction), and she has to take a few vitamins and on Sunday nights she get the good fortune of having me give her an Eprex shot. Also Taylor has to drink a ton of water as her kidneys do not keep her water level where it needs to be and she dehydrates easily, so easily in fact that we have had to take her to hospital three times in the last few months for dehydration.

Next Step – Kidney Transplant

So now we are getting close to our next step. Taylor will need a new kidney sooner rather than later. As the kidney function drops Taylor’s kidneys will not clean blood, regulate vitamin D or calcium very well until finally none of this would happen and she would need to go on dialysis. So the first step was for my wife and I to get ready tested as transplant donors. We went for blood testing and the living donor clinic (independent or our doctor or us) have decided to start testing me to donate a kidney. I have a 24 hour heart rate monitor on right now as I type and then there will be a full day of testing in a few weeks to test me and see if I am a good match.

As for kidney transplant itself, a transplanted kidney will last for 10 to 15 years and then Taylor will be shopping for another one. The surgery seems to be common and the doctor that we spoke to earlier this week say that they do about 50 kidney transplants every year with only about 5 being done for kids. If all goes according to plan I will donate the kidney, Taylor will get the kidney put into her body and hooked up, and we will be out of the hospital within a few days. People live completely normal lives with just one kidney and the only suggestion that our transplant doctor gave me was to not eat protein powder because of the pressure it puts on the kidney. Diet and exercise should be the same.

So as you can imagine this as been a really trying time for our whole family. We are worried for Taylor and hoping that everything is done before she would have to go on dialysis but for now we are day to day with this thing struggling, praying, hoping, and just living through it.

I know that I may have missed a lot in this post, in fact I expect to write a few posts on the subject as we are becoming pretty well versed in kidney issues and health of kidneys. Fire away any questions that you want and Michelle and I will answer them for you.

My Daughters Kidney Disease, 5.0 out of 5 based on 1 rating

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