Trudy Triumph's Neurogenic Bladder Blog

Where is MY help for Kidney Disease?

I had my physical this week and my blood levels showed my kidney function looked worse than last year. I am not getting back-to-back bladder infections any longer because I take an antibiotic daily.  I thought that my kidney function would be better. I realize that I am far from dialysis but I am creeping towards it, all the same.

Stage 1 & 2 kidney disease is a bit of a wake-up call but many live with this and have no idea their kidneys are not working at a normal level.  I knew I had been categorized “Stage 3” kidney failure over a year ago and I had worked hard to ensure my kidneys did not grow worse. Now, my blood results show that I am edging back towards Stage 4.  This sucks!  Of course, I am not happy.  What to do?  My doctor said he was happy that I look stable. My numbers dropped. How is that stabilized?  I emailed him, “Is there anything else I can do?” . . . Evidently not.

I have been sharing my private thoughts with you folks for almost six years now.  I am not about to quit because I am a bit embarrassed about this.  No, I am not “Beyond Embarrassment” on this one.  I feel a bit ashamed because instead of feeling peace, I do feel somewhat frustrated and afraid.

Why is there nothing I can do?  As my numbers get worse, I find myself closer to dialysis!

Now I ask the sinister question . . . Is it possibly because there is more money in dialysis than keeping patients out of it that my doctors allow my numbers to worsen?  Where are treatments for those of us who have an “underactive bladder”?  I see the commercial on TV, “I gotta go, gotta go, gotta go.” That commercial is for those with overactive bladder. There are meds and treatments for patients with an overactive bladder. But . . .

What about me?  What about those of us that have a completely dead (flaccid) bladder and that edge toward kidney failure because of it?  We don’t have to “go, gotta go, gotta go.”  We need a catheter to pee.  I see catheter commercials on TV.  Is there any more I can do? Where is MY medicine? Where is MY magic procedure?

I can’t even take vitamins because I not only have an underactive bladder, I also have an underactive bowel.  So many supplements play havoc with my digestive system.  I wonder what research is being conducted to help those of us with an underactive digestive system to stay comfortable and remain healthy?

Do you know how common this condition really is?

 Look at the ways you could climb into my boat.

Taken from the book Beyond Embarrassment. Pages 197-199

Risk Factors for the Development of a Neurogenic Bladder, Grouped into Eight Health Area Headings:

Health Area Category Risk Factors Associated with Neurogenic Bladder

AGING Kidney Stones Pelvic Organ Prolapse Post-Menopausal Changes to the Vagina Erectile Dysfunction (Men) Prostate Enlargement (Men)

CANCER Bladder Carcinoma  Central Nervous System Tumors Human Papillomavirus-induced Cancer  Urothelial Carcinoma (Transitional Cell Carcinoma     (TCC))

CHRONIC HEALTH   Ankylosing Spondylitis (AS) CONDITION Chronic Inflammation of the Urinary Tract      (Interstitial Cystitis or Cystitides) Congestive Heart Failure Severe Constipation Crohn’s/Colitis Diabetes Mellitus (Diabetic Neuropathy/     Dysautonomia) Lupus Osteoarthritis Paget’s Disease Paresis Endometriosis

HEREDITARY   Behçet’s Disease Marfan Syndrome MTHFR Gene Mutation (Methyl-Tetrahydrofolate     Reductase) Spastic Paraplegia (Hereditary) Spina Bifida Tethered Cord Syndrome Visceral Neuropathy (Familial) Wolfram Syndrome

INFECTIOUS DISEASE   Encephalitis Guillain-Barré syndrome (GBS) High Fever Resulting in Delirium HTLV 1&2 Lyme Disease Meningomyelitis Polio Schistosomiasis (Bilharziasis) Spinal Epidural Abscess Syphilis Tuberculosis (chronic); Ureases (bacterial) Urinary Tract Infections (chronic)

NEUROLOGICAL   ADHD Disease  OR   Alcoholism or Chronic Drug Abuse BRAIN-CHEMICAL   ALS IMBALANCE Alzheimer’s Disease Anxiety/Depression Dementia Inflammatory Demyelinating Polyneuropathy   (chronic) Multiple Sclerosis Neural Lesion Neurosarcoidosis  Parkinson’s Disease Stroke

SUBSTANCE ABUSE/   Vitamin D (Kidney) VITAMIN DEFICIENCY/ Drugs or Alcohol DRUG EFFECT  Heavy Metal Poisonin  Overeating  Prescription Medications  Smoking

TRAUMA   Accidental Injury to the  Brain and/or Spinal Column (SPI)  Cauda Equina Syndrome Cerebral Palsy  Colon Surgery  Female Genital Mutilation   Fistula  Herniated Disks  High Impact Exercise Postpartum Surgical Procedures  Rape  Spinal Cord Trauma Traumatic Brain Injury (TBI) Vaginal Delivery abuses of bladder

From the book “Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel” by JoAnne Lake with Julia Parker

So here is my point.

There are so many people out there who feel rotten because of an underactive bladder and what they don’t know is that not only are they suffering, their kidneys are suffering . . . all without pain. The damage is being done all the same.

That is the interesting thing about kidneys.  There is little pain. No real wake up call.  An underactive bladder is a real UNADVERTISED and UNDERVALUED condition.  We need more hype!

Is it OK for doctors to just watch the nightmare and wait for us to go on dialysis?

WHERE IS THE INTERVENTION?

Why do I have to wait?  Is this about money? Is there really nothing that can be done?  I have a lot of confidence in my doctor, well . . . maybe.  What am I missing here?

Will someone please explain it all to me?

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