1

How I Beat an Incurable, Rare Kidney Disease

My story

Elaine Godley

Last Update 5 months ago

New Book Coming Soon

What is Medullary Sponge Kidney?

Medullary sponge kidney (MSK) is a congenital disorder characterised by cystic dilatation of the collecting tubules in one or both kidneys[1][5]. 


This condition causes the formation of small cysts in the inner part of the kidneys, giving them a sponge-like appearance[5][11].


CausesThe exact cause of MSK is unknown, but it is believed to be a developmental abnormality that occurs during fetal growth[10]. 


In most cases, it is not inherited, with genetic transmission occurring in less than 5% of cases[4].


Symptoms and Complications


While many people with MSK are asymptomatic, the disorder can lead to several complications:


- Increased risk of kidney stones- Urinary tract infections (UTIs)- Blood in the urine (hematuria)- Flank pain- Renal colic


In rare cases, MSK can lead to more severe complications such as renal tubular acidosis or kidney failure[9].


Medical Treatments


1. **Kidney Stone Management**:


- Extracorporeal shock wave lithotripsy (ESWL) or percutaneous surgery for large stones[6] - Increased fluid intake to help pass smaller stones


2. **UTI Treatment**: - Antibiotics to treat active infections - Prophylactic antibiotics for recurrent UTIs


3. **Medications**: - Thiazide diuretics to reduce calcium excretion in urine[8] - Potassium citrate to prevent stone formation[3]


4. **Pain Management**: - Analgesics for renal colic or chronic kidney pain


Natural Remedies and Preventive Measures


1. Hydration: 

- Increasing fluid intake to produce about 2 liters of urine daily[9]


2. Dietary Modifications: - Low sodium diet - Normal calcium intake - Reduced animal protein consumption[8]


3. Regular Monitoring: 

Annual check-ups including urinalysis and urine cultures[9]


4. Lifestyle Changes: 

Maintaining a healthy weight and regular exercise

While there is no cure for MSK, proper management can help prevent complications and improve quality of life for most patients[2].


Citations:[1] https://en.wikipedia.org/wiki/Medullary_sponge_kidney[2] https://www.medicalnewstoday.com/articles/medullary-sponge-kidney[3] https://pubmed.ncbi.nlm.nih.gov/20576821/[4] https://www.msdmanuals.com/professional/genitourinary-disorders/cystic-kidney-disease/medullary-sponge-kidney[5] https://www.kidney.org/kidney-topics/medullary-sponge-kidney[6] https://emedicine.medscape.com/article/242886-treatment[7] https://www.orpha.net/en/disease/detail/1309[8] https://emedicine.medscape.com/article/242886-medication[9] https://rarediseases.org/rare-diseases/medullary-sponge-kidney/[10] https://www.msdmanuals.com/home/kidney-and-urinary-tract-disorders/cystic-kidney-disorders/medullary-sponge-kidney[11] https://www.niddk.nih.gov/health-information/kidney-disease/children/medullary-sponge-kidney[12] https://my.clevelandclinic.org/health/diseases/23169-medullary-sponge-kidney

Diagnosis

As you can see from my picture, I am a happy, healthy individual, although this didn't happen overnight!


From the age of around 9 years old until approximately 16, I was multi-talented in various sports and a competitive swimmer. In the height of my swimming days I trained twice daily, went on weekend training camps, represented my county at national level, and participated in European tours with my club.


Every now and then I would endure back pain, projectile vomit, or experience urine infections.


Chlorine in the water was considered a possible cause in hindsight.


During my teens especially, I visited various doctors and a specialist gynaecologist who was disgusted with me. She diagnosed my condition as having Salpingitis which could only have been causes by me sleeping around she said.


What a joke - I'd never even seen a man naked never even slept with one. My Father was a police officer and very protective of me, his only daughter.  My upbringing had rules!


Fast Forward

Around the age of 22 I was so sick that I got blue-lighted in a fast ambulance to St Ann's hospital in Tottenham, North London. It was thought I'd contracted typhoid and so I was met with hazmat suited staff and shoved unceremoniously into an isolation ward.

I was poke, prodded and one particular very overweight black nurse treated me like I had done some horrendous thing to her and her family.

She was very unkind, in fact she was positively cruel to me, and hurt me at every opportunity when sticking needles into me.

Long Story Short

My diagnosis was a rare and incurable disease that I was apparently born with. This explained the on/off random sickness I experienced during my teens in particular.

I was put onto a 3-week rotating cycle of different antibiotics eventually, following many challenges with unsuitable drugs, including a 10-week hospital stay when giving birth to my daughter.

Natural Healing

I was introduced to natural wellbeing strategies in my mid-forties following 23 years, yes you read it right, 23 frikkin years on antibiotics. 

The following helped me to totally reverse my condition:

  • HTMA hair mineral tissue analysis
  • No tap water
  • Nothing microwaved
  • Clean organic wholefood diet
  • Nothing processed
  • Reducing stress
  • Chiropractic care (lots of it)
  • Shiatsu
  • Exercise
  • Positive mindset

             More Details will be in               The Executive Mother

This is the working title of my upcoming book which is part of a series.

CLICK HERE to join my community and read chapters as they are released.

 

Was this article helpful?

0 out of 0 liked this article

Still need help? Message Us