HEALTH FACTS ABOUT WILL

 

Will has multiple comorbidities, serious and life-threatening medical diagnoses, which make life challenging.  Some of these conditions include Craniopharyngioma, Panhypopituitarism, and IgA Nephropathy.  Will’s panel of doctors believe receiving a kidney transplant will assist in successfully managing his comorbidities easier leading to a healthier and more fulfilled life.  Facts about Will's conditions and many of the complications Will has or is currently experiencing can be found below.

 

Craniopharyngioma

• A rare brain tumor primarily affecting children and adults over 50. 

• Approximately 100 – 120 American children diagnosed annually. 

• Accounts for about 6% of childhood brain tumors.

• Located near the pituitary gland and optic nerve.

• Can cause extensive life-long medical complications including loss of hormone production and blindness.

• Treatments include brain surgery, radiation therapy, and chemotherapy.

• Can require life-long medications leading to secondary medical diagnoses. 

 

Panhypopituitarism

• A rare endocrine disorder characterized by the deficiency or absence of one or more pituitary hormones due to damage to or loss of the pituitary gland. 

• Approximately 5% of Americans have Panhypopituitarism.

• Can cause stunted growth, absence of/delayed puberty, infertility, adrenal insufficiency, hypothyroidism, diabetes insipidus (rare condition where the body is unable to regulate fluid balance), fatigue, weakness, weakened immune system, depression, low metabolism, excessive thirst and urination, and more.

• Can lead to low cortisol production needed for regulating stress response, metabolism, and immune function.

• Can lead to low aldosterone production needed to regulate balance of sodium and potassium, which affects blood pressure and fluid balance.

 

IgA Nephropathy (Immunoglobulin A Nephropathy/Berger’s Disease)

• An autoimmune disease where protein called immunoglobulin builds up in kidneys causing inflammation and damage to the kidney’s filtering units called glomerular.

• Stages 4 and 5 IgA Nephropathy can cause Uremia, which is when waste products normally excreted in urine build up in the blood. 

• Symptoms include extreme fatigue, loss of appetite, failure to thrive, excessive thirst, mental confusion, skin problems, fluid retention, muscle cramps, restless legs, and chronic nausea, vomiting, and diarrhea. 

• Can lead to high blood pressure, anemia, Uremia, Chronic Kidney Disease (CKD), acute kidney failure, and End Stage Renal Disease (ESRD). 

• Approximately 0.021% of Americans have IgA Nephropathy.

• No cure is known for IgA Nephropathy. 

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Dialysis​​

• A medical treatment that helps remove waste and excess fluid from the blood. 

• Approximately 0.2% of Americans are on dialysis.

• Average life expectancy is 5 – 10 years, though it varies significantly based on comorbidities and other health factors.  A smaller percentage of dialysis patients can life longer.

• Dialysis patients with comorbidities, other serious health concerns, have a shorter life expectancy.

• Hemodialysis removes blood from the body, filters it through a machine to remove waste and excess fluid, and returns clean blood back into the body.  Many patients on hemodialysis go to a clinic for up to 4 ½ hours three times a week.

• Peritoneal dialysis removes waste from the bloodstream through osmosis by sugar water filled into and removed from the abdomen.  Most patients on peritoneal dialysis spend many hours with the sugar water in them daily.  

• Complications can include risk of MRSA, MSSA, Sepsis, Peritonitis, other serious infections, repeated surgeries to correct blockages to dialysis access points, syncope (passing out), low blood pressure, muscle cramps, cardiovascular problems, low nutrition, and more.

 

Kidney Transplant and O+ Patients (Will is O+)

• Over 260,000 living Americans are kidney transplant recipients.

• Approximately 90,000 Americans are on the kidney transplant wait list.

• Approximately 28,500 Americans received a kidney transplant in 2024, with roughly 6,400 of those being from a living donor.

• Average life expectancy of a kidney transplant recipient with a living kidney donor is 20-25 years from a single kidney transplant.

• Average life expectancy of a kidney transplant recipient with a deceased donor is 10-15 years from a single kidney transplant.

• O+ blood type is a universal donor but exclusive receiver. 

• O+ donor recipients are one of the two hardest blood types to match for transplant. 

• Approximately 30% of Americans on the kidney transplant list die or are removed from the list before receiving a transplant.

• Approximately 13 Americans a day (4,745 a year) die while waiting to receive a kidney.