LIFE ON THE WAITING LIST: So I'm not crazy afterall...

Tuesday, March 26, 2013

So I'm not crazy afterall...

It gets worse at night...the weird feelings in my head. I feel dizzy. I see things out of the corner of my eye and when I turn to look... nothings there. Or often I will blurt out something in my sleep and it wakes me up as well as my husband..My thought process is slow and I feel as though I am having a panic attack. I came across this article and now I understand why I am having these feelings..I think this has a lot to do with my insomnia as well. I feel so restless at night and even when I do fall asleep I only stay asleep for 2 to 3 hours.

THE EFFECT OF KIDNEY FAILURE ON THE BRAIN
Uremia
Kidneys normally remove extra water and wastes from your blood. If they fail, blood levels of urea increase. Urea is toxic to the body and can affect all the major organs including the brain. Symptoms usually only appear when kidney function falls to less than 10 percent of normal. It precedes uremic coma and causes disorders of memory, thinking, speech, perception, emotions and other neurological manifestations.

I experienced this in the hospital when my BUN level reached 105. I actually thought the nurse had put something bad in my IV! She explained to me that my BUN was too high. Right now I am sitting at about 85 to 90. At least I am aware of this and what is going on...but it is such a scary feeling..I want to feel better so bad. Just one day of freedom from all this sickness would be wonderful...

I ventured out yesterday...I usually don't drive anymore but I desperately wanted to get out of the house even if for a little while. So I drove myself to the grocery store. What a sight I must have been getting out of the car and slowing making my way across the parking lot. I often wonder if people assume I must be drunk by the way I stumble around at times.I was looking at a display of sale items when I... without looking... grabbed the nearest buggy and made my way through the store. I heard a lady yell " EXCUSE ME where are you taking my buggy!" I quickly explained I wasn't looking and how sorry I was and ohhh... I was sooo embarresed! She snatched it away and just looked at me as if I was trying to steal it! LOL!

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chiari info

Chiari Malformation is a brain disorder where the opening at the bottom of the skull (foremen magnum) is too small and the bottom of the brain (the cerebellum) pushes through the opening. The result is increased spinal fluid pressure causing symptoms from severe headaches, neck pain to paralysis (see other symptoms below). Found by Austrian doctor, Han Chiari in the 19th century there are four types with type 1 being the most common and 4 being the most rare and incomparable with life.

A person is born with CM, acknowledgement of it is the rarity until symptoms make a parent seek help for their child. From regular a doctor checking reflexes and balance to x-rays and Cine MRI's testing for CM takes some time. Some of the symptoms include but are not limited to:

troubles swallowing/sometimes speaking (may lead to growth issues)
severe headaches/neck pain brought on by coughing or sneezing
severe pain in shoulders
respiratory problems/sleep apnea (where the child stops breathing during sleep)
loss of bowel and or bladder control
weakness/stiffness in arms and or legs
loss of motor control (can be paralysis)
balance problems
numbness/tingling in hands and or feet with inability to feel hot/cold
For children, only 1/3 will show up on MRI so the doctors have to rely on information from other testing. These children may also have other conditions such as Spina Bifida (about 30%), hydromyelia (aka Syringomyelia), Tethered Cord Syndrome, spinal curvatures (older children). The number of children that have CM is unknown since they can be asymptomatic for many years.

Cognitive, emotional, developmental and behavioral studies of the effects of CM in children have been done however the inability of children to express how they feel the studies are not well understood. There is no cure, only treatment of symptoms. The diagnosis and treatment can be a strain financially, emotionally and physically on the entire family, a good support system including excellent doctors are a must.

A huge obstetrical is that CM is relatively unknown. Because of this some may ignore symptoms to be associated with "growing pains" or other benign causes. The best thing to do is get your child to a doctor to find out the real cause of the symptoms. If your child has already been diagnosed, fear not because there are many places to get information and support. Also spreading the word about CM Awareness helps you advocate for your child.

IGA Nepropathy

According to the IGA Nephropathy Foundation of America IGA Nephropathy is one of the most common and undetected kidney diseases and occurs when IGA – a protein that helps your body fight infections – settles in the kidneys. This disrupts your kidney’s ability to filter waste and excess water from your blood. Over time, these IGA deposits may cause blood and protein in your urine, high blood pressure and swollen hands and feet. It can appear suddenly or, most often, progresses slowly over many years and can result in end-stage kidney failure. By the time the symptoms of kidney failure occur (swelling in the hands and feet, nausea, fatigue, headaches and sleep problems), total kidney failure is near. When total kidney failure occurs, patients will need dialysis or a kidney transplant. I have had this disease for many years and now am in need of a transplant.

Stages of Chronic Kidney Disease

My GFR is around 10 to 14ml/min and sometimes goes as low as 8ml/min which puts me at end stage....Glomerular Filtration Rate (GFR)

Glomerular filtration rate (GFR) is the best measure of kidney function. The GFR is the number used to figure out a person’s stage of kidney disease. A math formula using the person’s age, race, gender and their serum creatinine is used to calculate a GFR. A doctor will order a blood test to measure the serum creatinine level. Creatinine is a waste product that comes from muscle activity. When kidneys are working well they remove creatinine from the blood. As kidney function slows, blood levels of creatinine rise.

Below shows the five stages of CKD and GFR for each stage:

Stage 1 with normal or high GFR (GFR > 90 ml/min)
Stage 2 Mild CKD (GFR = 60-89 ml/min)
Stage 3 Moderate CKD (GFR = 30-59 ml/min)
Stage 4 Severe CKD (GFR = 15-29 ml/min)
Stage 5 End Stage CKD (GFR <15 ml/min)

chiari angel

Tuesday, March 26, 2013

So I'm not crazy afterall...

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