LIFE ON THE WAITING LIST

Tuesday, October 22, 2013

Somewhere in this world Ryan's organs are helping someone live a full and healthy life. His heart is beating in someones chest. His lungs are breathing life into someone who couldn't breath before without a struggle. His right kidney is filtering toxins out of someones body. His left kidney is doing the same in my body. Thanks to my son's gift I am healthier than I have been in years. His pancreas and liver saved two other lives as well. Because of Ryan's gifts of life I have found some peace..even if it is just a little. I still grieve..I still hurt... I still want him here.. but at least I have the comfort of knowing a piece of my son lives on. Fulfilling someones dreams even if not his own. I wonder if they know the pain he endured in his last days and what a special and kind person he was. The sacrifice he made. If I could speak to them I would say... live life and enjoy every moment....take special care in the gift you have been given....don't take anything for granted....his life had meaning and purpose. Ryan would be happy to know he was able to help someone else. That is what he did in this life as well as the afterlife. My son my Hero...I had 20 precious years with the privilege of being his mom. He was the greatest young man I had ever known.

3 comments:

AnonymousOctober 31, 2013 at 7:50 AM
Zona I will continue to pray until no one else passes away due to no cure for Chiari and any other related neurological conditions. No one else should lose a child, a parent, a sibling, a grandchild, a spouse and or a friend. I praise Ryan for his gallantry and foresight to help others in their moment of need regardless of who they are. Thank you for all you are doing to raise awareness to Conquer Chiari and Organ Donation. May God bless you and your family. Your friend in Christ. Maria "Maruchy" Mendoza
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Samantha Chandler MarshallOctober 31, 2013 at 3:08 PM
Zona I am behind you 100% in helping to raise awareness for this horrible condition that I also suffer. It's deadly in so many ways and its something that Doctors are clueless about, while pretending to act like they know it all, and something needs to change fast before we lose anyone else!
RIP To my Chiari Brother and love to the whole Family Zona.
You know if you ever need my help, I am just an inbox and a plane ride away xxx
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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, October 22, 2013

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