Tuesday, December 27, 2011

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!

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