Silver Linings on Dark Clouds

By Brick ONeil

My Life with Alport's Syndrome: A personal story of life with kidney failure, from diagnosis to dialysis and finally, transplant. Facing uncaring healthcare and social services systems while fighting against a genetic disease that causes kidney failure, extreme fatigue, hearing loss and eventually death unless treated.

• Language: English
• Publisher: Brick ONeil
• Release date: Apr 27, 2013
• ISBN: 9781301831616

Brick ONeil

Brick ONeil grew up in America’s heartland, the midwestern United States, receiving a Bachelors of Arts in Religious Studies then moving to the southern United States for his Masters in Human Resources, living in both Oklahoma and Texas for some time before settling in the Pacific Northwestern coast in the Emerald City, Seattle.He has been writing professionally since 2001 and before that was a Vocational Rehabilitation Counselor in the private workers’ compensation field, still holding his Certified Rehabilitation Counselor certification. He began writing articles and working on projects for clients while writing his first novel, Aside of Murder under his writing business, Lione Services.Now he has ten books under his belt in four genres, fiction-mystery, fiction-short story, non fiction-cookbooks and non fiction-biography. He has his mystery series, The Rose Petal Wine Murder Mysteries with two books published now out of the seven; the cookbook series, “Simple, Healthy, Fresh”, with books 1.0, 2.0, 3.0 and the Ultimate; three books of short stories, Different Dreams; Unrelated: A selection of short stories and Triad: Fates, Furies and Graces finally,his short biography, Silver Linings on Dark Clouds (My Life with Alport’s Syndrome) is out as well.Find him online:http://brickoneil.com (pages for each book)http://linkedin.com/in/brickoneilhttps://www.facebook.com/brickoneil

Book preview

PROLOGUE

Quite a few people over the past decade or so have asked me to write about my fight with Alport’s Syndrome, subsequent renal failure and transplant.

When I was diagnosed in 1998, I was told by my General Physician/Practitioner and Nephrology Department at the University of Nebraska Medical Center, was that Alport’s Syndrome is a rare, degenerative kidney disorder that cause the kidneys to stop filtering and cleaning blood of impurities. Side effects included lenticular (curved) eyes (that may or may not affect vision), extreme fatigue and hearing loss. I was also told it strikes mostly males of African American descent, although Caucasian females have been known to developed kidney failure. Since the intermediate years, The National Institute of Health has on their National Library of Medicine websitehttp://www. nlm. nih. gov/medlineplus/ency/article/000504. htm:

"Alport’s syndrome is an inherited form of kidney inflammation (nephritis) [on the Mother’s side]. It is caused by a mutation in a gene for a protein in the connective tissue, called collagen.

The disorder is uncommon. It most often affects males. Women can pass the gene for the disorder to their children, even if they have no symptoms.

Risk factors include:

End-stage kidney disease in male relatives

Family history of Alport’s syndrome

Hearing loss before age 30″

The National Institute of Health also describes symptoms on the above cited website:

"The disorder damages the tiny blood vessels in the glomeruli of the kidneys. The glomeruli filter blood to make urine and remove waste products from the blood.

At first, there are no symptoms. However, the destruction of the glomeruli over time leads to blood in the urine and may decrease the effectiveness of the kidney’s filtering system. Often kidney function is lost over time and waste products and fluids build up in the body.

In women, the disorder is usually mild, with few or no symptoms. In men, the symptoms are more severe and get worse faster.

Symptoms include:

Abnormal urine color

Ankle, feet, and leg swelling

Blood in the urine (may be made worse by upper respiratory infections or exercise)

Decreased or loss of vision (more common in males)

Flank pain

Loss of hearing (more common in males)

Swelling around the eyes

Swelling overall

The condition can progress to end-stage renal disease (ESRD) at an early age (between adolescence and age 40).

Note: There may be no symptoms in some cases. Symptoms of chronic kidney failure or heart failure may be present or may develop. "

I have had women on the Alport’s Syndrome Foundation Facebook page tell me that the women in their families do get as severe symptoms as men and do indeed develop renal failure.

1998

It started off with my energy levels low enough that I thought I was iron deficient with anemia. Subtler was my need to constantly turn up the volume on the TV. I just couldn’t hear or understand very well people on TV and store clerks were so mush mouthed I had to repeatedly ask them to enunciate, because I could not understand them. Something I still do to this day, as a matter of fact. One of the first things a kidney patient learns is to remove stress from one’s life. No work stress, no home life stress, no outside stressors, otherwise, that causes the kidneys to work harder, causing further degeneration, which puts more pressure on the heart, which causes a slew of issues itself; a chatch-22, if you’ve heard the phrase.

I was living in Seattle at the time, in 1998, trying to find a job (unsuccessfully), having graduated with my Master’s degree in Vocational Rehabilitation Counseling, and being Nationally Certified. I had just graduated the year before with a Master’s degree but was constantly being told, that although I interviewed well, since my degree wasn’t from a local college or university, I would never be hired (something I’d hear repeatedly over the next decade in different states).

I’d had enough of Seattle interviews, driving in traffic and the people, having gone through 4 jobs in two years in the field of Workers’ Compensation as an adjuster. I found it to be a thoroughly incompatible career. No one wanted the vocational rehabilitation counselor involved-not the clients, the doctors, and the lawyers. They do everything they can to delay the claim from being closed, such as disapproving job analyses by doctors, changing doctors when the injury is healed and the