ESRD Briefly Explained

So What Is End Stage Renal Disease?

There are some good websites out there that explain what end stage renal disease is. I am not an expert and no information here should be considered as medical advice, but I will just briefly relay some of the information I have picked up over the years.

In a nut shell, end stage renal disease occurs when your kidneys stop working. This can be a variety of reasons, often times it is caused by uncontrolled high blood pressure and diabetes. There are other causes as well, such as kidney disease. And unfortunately if a person has all three of the above conditions that can really wreak havoc on your body.  For the sake of being accurate, people can also develop end stage renal disease by injury or trauma to the kidneys or major blood loss.

The medical world tells us that end stage renal disease (ESRD) is permanent. It cannot be changed. Once someone reaches ESRD, the only way to stay alive is dialysis or transplant.  Personally I hope this isn’t true and I am researching nutrition in the hopes of improving my condition.

In my case there were several reasons that led me to end stage renal failure. As I alluded to in another post I was diagnosed with a kidney disease (also referred to as chronic kidney disease) at the age of 18. Between the ages of 31 and 33 I went from stage 2 (mild) kidney disease to stage 5 (end stage renal disease) without knowing things had gotten so bad. Sometime over the last year and a half I developed mild type 2 diabetes (mild because it is currently easy to control by eating the right foods). Also my blood pressure was high and uncontrolled for that same period of time.   

Because the kidneys filter excess fluid and waste from our blood, that process depends on healthy blood vessels. But high blood pressure damages the blood vessels in and leading to your kidneys. This leads to damaged kidneys over time.

Make sure to have your blood pressure checked and encourage your loved ones to do the same! And yes, EVEN if they don’t have health insurance!

Your Story Hour - Bible Comes Alive Series

As my sister and I were growing up, our parents used to buy these blue cassette tapes from our church bookstore. They were Bible Stories on tape read by “Aunt Sue and Uncle Dan” (The CD tapes say Aunt Sue and Uncle Dan, but online it says Aunt Carole and Uncle Dan. There might have been a change in the female voice at one point.). We used to listen to these for hours and hours. We each had our own portable cassette tape player that we used on a regular basis to listen to these Bible Stories.

Last year I decided to do a search online to see if these stories were available for purchase. I did find them online but quickly realized they were a bit out of our price range at that time. I ended up reserving a few of the series from the library but it was just a pain to check them out, take them back and then check them out again. Eventually I just took them back to the library and stopped bringing home new ones. As Christmas time rolled around my parents and sister decided to each by one series for the boys for Christmas. I bought one as well and we are now the proud of owners of sets 1-4 of the Bible Comes alive series. Each boxed set has multiple CDs with a total of anywhere from 24-27 individual stories based on length. The Bible series includes sets 1-5. You can find these at this link: http://www.yourstoryhour.org/transaction.php

So far my four year old son really enjoys listening to these CDs!

The same company that presents the Bible stories also sells history stories. I personally have not listened to those, but I look forward to doing so some day! Your Bible Story hour is also available on online radio.

Disclosure: I have not been paid or compensated in any way to give an opinion of these products. This is my own opinion based on a product I enjoy.

A Glance At The Past and The Start of Homeschooling

My story might be a little different from the average homeschooling mother. I was a single mom for a long time, having gotten pregnant at 16 years old. Homeschooling was never an option during those days. I raised my son as best I could while working full time. I can not say that I am proud of many of the choices I made back then. There are so many things I would do differently if I could. Mainly spending more quality time with my son rather than focusing on pure survival (how I would have done that though, I don't know). I was young and I left all schooling responsibilities to the public system and his teachers. I assumed they new more than I did and for years I considered myself intellectually inferior to everyone else. I did whatever I could to avoid helping with reading, math, science, etc. My son learned not to ask me for help with school work.

It breaks my heart to think back on those days. The truth is I loved my son with all my heart, but I just didn't know how to be a better mother. I was foolish to think that loving someone is enough. Those were hard times and a huge part of me just wanted to find a good man, settle down, get married and have more children. All I wanted was to be a stay at home mom and take care of my kids. I hated working full time and I hated that I felt that way. Society had drilled it into my head that it was wrong to want to be a stay at home mom.

Eventually I met my husband Jeremy. We had one child before making the decision to move from Wisconsin to my home state of Washington. For me it was important to start over and do things the 'right' way. Jeremy and I lived apart for 2 months after moving to Washington, then we were married. For me it was a chance to  re-dedicate my life to God and work on being the best mother and wife I could be. One concern of mine was that we would never be able to afford for me to stay at home with the kids. But as luck (or God) would have it, we couldn't afford for me to work! The cost of daycare, gas, and all the other expenses that go with full time work (such as more meals out and more boxed foods because you don't have the time to cook from scratch), etc would have just been too much. So I became a stay at home.

Over the next two years my oldest son Kyle was placed into two different Christian schools for 7th and 8th grade. As 9th grade approached I realized that the Christian High School options were few and far between. There just weren't any options I liked, nor could we afford any of the options. Public school was definatly NOT an option any longer. So that left homeschooling.

We have been homeschooling for 1 1/2 years and I still consider myself to be a new homeschooling mom. I feel like I will never have it all figured out. There are so many types of curriculum available to choose from, let alone all the different styles of homeschooling. We have sort of settled into the 'eclectic' field though, leaning towards Charlotte Mason style. At least thats what I like to think. I find reading to my kids is so important. Do I do it as often as I feel I should? Certainly not. But they get on average 30-60 minutes of reading a day. Also, I encourage everyone in the family (my husband and my 16 year old son) to read to the younger two as much as possible.

This is a photo of my husband, my middle child Kaleb and I in 2007.

Attack Of The Killer Kidney Disease

If you are wondering what ESRD means it stands for End Stage Renal Disease and this leads us to the start of this blog. A year or so ago the thought of starting a blog crossed my mind from time to time, but at that time I didn't have much to say so I never started writing until now. You might wonder what has changed? The change has been that I am now facing some serious health issues and I started to think that maybe a blog would be a good place to discuss what is going on and perhaps eventually offer support to others dealing with Kidney failure.

When I was 16 years old I became pregnant with my first child. At that time my Doctors informed me that something was wrong with my kidneys due to excess protein in the urine. They suggested that I have a kidney biopsy after my son was born. My son was born 6 weeks after my 17th birthday, but I did not have the biopsy done until I was 18 years old. The diagnoses was IGA Nephropathy. What I was told at that time is that IGA Nephropathy was a genetic disease that affects the kidneys often showing up around the age of 12. They do not know what causes it and the only thing they could tell me is that 70% of patients with IGA N lead normal lives, but 30% end up on dialysis in 15-20 years. I was told that there was no way to know which group I would fall into.

I can tell you that now, 15 years later, I know which group I fall into. For 11-13 years my kidney condition stayed relatively stable. However, the last two years I did not have health insurance and because of this I was not able to see a specialist or monitor my blood pressure properly. High blood pressure puts excess stress on the kidneys and over the last 2 years my kidney function went from stage 2 to stage 5. I am now expected to start dialysis very soon. There are decisions I have to make regarding what type of dialysis to have, but I will post more on that later.

Throughout the years I have kept somewhat regular contact with a Nephrologist (Kidney Doctor) and the main thing has been monitoring my blood pressure. Being young and feeling invincible I went through times in my life where I didn't take my blood pressure medications regularly. In 2006 I became pregnant a second time and was determined to be a high risk pregnancy due to the kidney disease. All this meant was extra monitoring, more ultra sounds, more medical intervention.... and more dire warnings not to have more children in the future. Around this time I had a creatinine level of around 2.0something... In 2009 I went through a third pregnancy which was also considered high risk. My Nephrologist at the time often talked to me about making sure there were no more pregnancies. At this point I was still stage 2, with a creatnine around the mid 2's. After my third child was born I lost my medical insurance and from September 2009 until present I went without the care of a physician.

During those two years I really tried to focus on losing weight. I've always had a weight problem and if you look at my family tree, obesity is an issue on both sides. But over the years my weight has increased often from factors I couldn't seem to control (and from my love of chocolate.... lol). In 2004-2005 I gained 30-40 lbs after having two traumatic back injuries that resulted in long term chronic pain. Then I quit smoking in 2006, gave birth in 2007... moved from Wisconsin to Washington, and gave birth in 2009. After my third child was born I focused a LOT on weight loss. I started to count calories and established a regular exercise program. From December of 2009 until around April of 2010 I lost approximately 25 lbs. This was a HUGE success for me. I even went on a 6 mile hiking trip (yes, up hill) and came out ahead of most of the group (many of who were technically more physically fit on the outside than me). Then I got horribly sick with cold like symptoms and all my weight loss endeavors went flying out the window. Over the next 3-6 months I re gained the weight I had lost. That fall (2010) I tried again to focus on weight loss but I found it extremely difficult to stay on track, I just didn't have the energy (it is very possible that uremia symptoms were affecting me at that time, they come on very slowly... like a sneak attack). Then came 2011. All I can say about that time period leading up until November of 2011 is that *everything* was a struggle. I blamed it on my weight because I had no idea there was anything else to blame it on. In steads of exercising getting easier the more often I did it, it got harder. I was tired all the time, I had little to no energy and I was often short of breath. My ankles were continually swollen, around January I developed a horrible taste in my mouth that would not go away. I always felt confused and just couldn't concentrate or focus on things as well as I would like. I do have to say that I have always suffered from a form of short term memory syndrome but it just got worse and I often referred to myself as having a 'foggy brain' because that's how it felt. I never felt well, I was often nauseous and I took a LOT of pregnancy tests during 2011 looking for an explanation for the nausea and extreme fatigue.

In October of 2011 I received a free tooth cleaning from the mobile dental van, a wonderful program that helps low income individuals without dental insurance. The day of the cleaning the tech took my blood pressure and it was extremely high, in the ballpark of 160 over 120. My heart dropped when I heard that and I knew immediately that my health was in jeopardy. This blood pressure reading led me to find a free health clinic. I was blessed to find New Hope Health Clinic in Tukwila, it is a wonderful program run by volunteers. They had a contract with Highline Lab to do free blood work and when the blood work returned, I was told that I was in kidney failure. My creatinine was 5.24 and I was at stage 5 kidney failure. Then I was shown a list of symptoms of kidney failure. This list looks like this:

Symptoms of Uremia

• Fatigue (tiredness)
• Poor appetite
• Nausea / Vomiting
• Itching all over
• A bad taste in mouth
• Confusion
• Weakness
• Poor memory, forgetfulness

Suddenly it all made sense.... horrible but reassuring sense. I wasn't going crazy, those were real symptoms. I had been enduring every single one of those symptoms for over a year, some I think for almost two years. With exception of vomiting (I just had severe nausea off and on) and loss of appetite (nausea affected my appetite at times but not severely).

I was encouraged by someone from the clinic to go to the hospital ER because of the results of those blood tests. In retrospect I didn't really need that ER visit, but it did lead me to find a new Nephrologist. Since then I've had several visits with the Nephrologist who has informed me I do need to start dialysis very soon. In the mean time I am trying to get health insurance to help pay the medical bills!