LIFE ON THE WAITING LIST: January 2013

Wednesday, January 23, 2013

Start Again...

After a couple of weeks of i.v. iron infusions and a medicine change I am once again stable at 13% percent of my kidney function. At the encouragement of my doctor at yesterdays appointment..I have decided I cannot give up on finding a donor. She once again said we will only use dialysis as a last resort for me and to only keep me alive until a donor is found. A live kidney transplant is my best option for long term survival. So..here I am again...pleading for a second chance, begging please consider donating if you are either B or O blood type. I ask you...what would you do if you were me? I have got to fight for my life.

Tuesday, January 8, 2013

From the Living Kidney Donor site....

While dialysis can be life-saving, it is only a stop-gap. It is a long, tiring, physically and emotionally draining process that is very hard on the body. Dialysis can do only about 10% of the work that a functioning kidney can do and frequently causes other severe health problems such as anemia, infection, bone disease, heart disease, and nerve damage. Consequently, the average life expectancy of a person on dialysis is only about 5 years.¹

A transplant provides a far longer life expectancy. Patients who have a transplant before dialysis becomes necessary live an average of 10–15 years longer than those on dialysis.² As one physician notes, “Kidney dialysis is an amazing procedure. But it is not yet as amazing as the kidney itself.” ³ Given the^foptions, a kidney patient’s best chance for survival is to avoid dialysis altogether and to receive a transplant^ffrom a living, rather than a deceased donor.

Dialysis is very hard on the body. When someone has been on dialysis, even if only for a short time, the risk of transplant failure is much greater. The longer the wait, the more extensive the dialysis and the higher the risk of failure grows.

Read more: http://www.livingkidneydonorsearch.com/living-donation/dialysis-a-poor-option
Imagine waking up every day with the possibility of having to be placed on a machine to stay alive.
Scary statistics...but a reality for me. I feel as though the monster is lurking outside my door. I will be starting dialysis when my gfr dips below 10% and stays there. Right now I am at 13%. I have been at 8% and managed to regain a few points. I never know what the day is going to hold for me. I wake up in the morning not knowing if I will need to go to dialysis by the time day is through. Things can change so quickly with this illness. I have accepted this as part of my life and just take it a day at a time.

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)

LIFE ON THE WAITING LIST

chiari angel

Friday, January 25, 2013

Wednesday, January 23, 2013

Start Again...

Tuesday, January 8, 2013

Dialysis is very hard on the body. When someone has been on dialysis, even if only for a short time, the risk of transplant failure is much greater. The longer the wait, the more extensive the dialysis and the higher the risk of failure grows.