LIFE ON THE WAITING LIST: July 2013

Friday, July 5, 2013

Hero needed..

It has been a long week. While most people were celebrating the 4th of July with their loved ones my husband and I spent 2 whole days in the er with our son. Still sick and throwing up from his chiari surgery last Monday he became so weak he could not move and his arms went numb. The er doctors checked his shunt for blockages (there were none) and gave him a bag of IV fluid and anti nausea medicine. He continued to throw up even with the pills and on Wednesday morning he had his first seizure. He collapsed and we had to call an ambulance. They put him on anti-seizure meds,gave him a bag of fluids and glucose and sent him home again. Last night while throwing up he blacked out on the bathroom floor twice. He has a doctor appointment on Tuesday and I am going to insist that he be re-admitted to the hospital. When your child is sick it is so hard to concentrate on anything else other than getting them well again. I feel so helpless as to where to turn now. I feel as though the doctors are not listening to us. They just shake their heads and say this is uncommon but happens sometimes with chiari. NOT ACCEPTABLE!

I really need to be strong and healthy so I can be here for my son. I urgently need a kidney donor and now more than ever! Please, if anyone reading this is interested contact Vanderbilt Transplant and give them my name, they will instruct you on how to proceed with the testing. Please help me live so I can take care of my son. Thank you for all the prayers.

Monday, July 1, 2013

Dealing with a chronic illness of any kind is demanding and life changing. I can handle the effects of my own illness and have been doing just that for many years. I continue to wait for my transplant,my potential donor is unable to donate at this time and may never be able to. It is my son and his diagnosis of Chiari Malformation that is foremost on my mind at the moment. He is still having a lot of problems even after all the surgery and everything he has gone through. The decompression and shunt has not relieved any of his symptoms and the doctors cannot give me any straightforward answers. I am one upset mama right now and am going to battle for my son. We are just now learning how devastating CM is for many patients. Unfortunately Ryan is one of the 25% of those who do not do well after the surgery.Many prayers are needed right now for my son and also for me to stay strong.

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

Friday, July 5, 2013

Hero needed..

Monday, July 1, 2013