LIFE ON THE WAITING LIST

Sunday, June 23, 2013

Not much happening in way of getting a kidney transplant any time soon. We have hit a snag. My cousin who has gone through a good part of the tests to be my donor has been ill and unable to complete the final testing. We have been informed by the transplant team that because both his mother and mine (sisters) had diabetes he could be ineligible to donate. Still,as soon as he is feeling better he is going to go ahead and try anyway. I am just taking it a day at a time. Besides, I am concentrating on my son right now,while trying to stay as healthy as possible. I have learned a lot about Ryan's diagnosis of Chiari and it has not been as easy a recovery as I thought it would be. I now know there is no cure for CM and is a debilitating illness. The shunt that was placed to drain his cerebral spinal fluid needs ongoing adjustments and is only working half the time.He is in tremendous pain a lot of the time and I am not sure what our next step will be until his doctors appointment next week. I have to be completely honest and admit that lately I have been so angry and have been asking God why? I am ashamed to admit that some days I have very little faith. But then I realize that God has been with me through it all and pulled me through some really scary moments. I don't know how I would have made it this far without believing in Him. Even though my faith is weak I believe God will strengthen me.

The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. (Isaiah 40:28-31)

1 comment:

Clara david September 16, 2020 at 1:11 PM
WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of breast cancer and her name is Sandra David I and my family have taking her to all kind of hospital in USA still yet no good result. I decided to search for cancer cure so that was how I found a lady called Peter Lizzy. She was testifying to the world about the goodness of a herbal man who has the roots and herbs to cure all kinds of disease and the herbal man's email was there. So I decided to contact the herbal man @herbalist_sakura for my younger sister's help to cure her breast cancer. I contacted him and told him my problem he told me that I should not worry that my sister cancer will be cure, he told me that there is a medicine that he is going to give me that I will cook it and give it to my sister to drink for one week, so I ask how can I receive the cure that I am in USA, he told me That I will pay for the delivery service. The courier service can transport it to me so he told me the amount I will pay, so my dad paid for the delivery fee. two days later I receive the cure from the courier service so I used it as the herbal man instructed me to, before the week complete my sister cancer was healed and it was like a dream to me not knowing that it was physical I and my family were very happy about the miracle of Doctor so my dad wanted to pay him 5 million us dollars the herbal man did not accept the offer from my dad, but I don't know why he didn't accept the offer, he only say that I should tell the world about him and his miracle he perform so am now here to tell the world about him if you or your relative is having any kind of disease that you can't get from the hospital please contact dr.sakuraspellalter@gmail.com or whats app him +2348110114739 you can follow him up on Instagram @herbalist_sakura for the cure, he will help you out with the problem. And if you need more information about the doctor you can mail me davidclara223@gmail.com
ReplyDelete
Replies

Add comment

Subscribe to: Post Comments (Atom)

If you are new to my blog and want to know more about Ryan's three month long journey with Chiari Malformation and our fight to save his life I suggest you start with my post from June 3rd 2013 titled My Son Ryan..... Ryan was diagnosed with Chiari One also known as Arnold Chiari Malformation. He also had Hydrocephlaus...Intracrainal Pressure. He underwent brain surgery after being diagnosed but died three months later. All I can disclose at this time is...My son did not have to die. If you or someone you love has Chiari make sure the doctors are Chiari Specialists.

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

Sunday, June 23, 2013

1 comment: