I’m Celia. Thank you for taking the time to read my story. I was born with a genetic disease called Polycystic Liver & Kidney Disease. The disease varies in severity from person to person and in my case I have the most aggressive type that will eventually result in a liver transplant and potentially kidney transplant.
My liver and kidneys are surrounded by 100’s of cysts, of differing sizes, a few as large as 10cm in diameter. The size of my liver is 3/4 times of a normal liver and almost reaches my bellybutton. A normal liver weighs approximately 1.5kg so I’m carrying an additional 4.5kg-6kg.
The volume and size of my liver alone creates numerous physical and mental problems. My doctor likened the physical aspects to being permanently pregnant. It compromises the function of the liver and kidneys, compresses surrounding organs, affects breathing, digestion, abdominal compression/swelling/pain, affects the spine & posture, causes hypertension... to name a few. The liver's main job is to filter the blood and detoxify chemicals and metabolise drugs. The cysts compromise the function causing tiredness, inflammation, hypertension, malnutrition and more. It is incredibly uncomfortable and the internal pressure feels like having a lead bowling ball inside you pushing on all your organs and wanting to push out.
It has resulted in numerous bouts of depression which at times has made me question my life. Most days I feel like salmon swimming upstream and as with all chronic illnesses, you never have respite, it’s constantly chipping away year after year destroying your inner spirit. It has built barriers and prevented me from being open to meeting someone special and forming a loving relationship and having a family of my own (which has always been my dream). It has resulted in time off work, stress at not being able to work and support myself in the future and a sense of loneliness and helplessness. As a women it makes me feel undesirable. I have no waist due to the size of the liver and swelling making me feel overweight and unattractive. The psychological affects are immense for me.
I am a fighter though and try to stay positive and keep smiling as much as I can. I have always been a vibrant person, full of zest for life and all it has to offer but this illness is slowly grinding me down. But I have never given up on me, trying to eat healthily, practicing yoga & meditation regularly, trying various diets etc but while it all helps the problem is still very much there and very slowly getting worse.
I desperately want to avoid surgery and as a yogi believe there are ways to reset the body and heal using alternative medicines, which i unfortunately can’t afford. I have been told of a couple of places in India that I would love to visit and which I hope may pave the way for others suffering with the same illness to avoid life threatening surgery.
I unfortunately lost my job last year and was feeling physically and mentally exhausted at the time so decided to move in with family to help focus on my health. I have been trying to look after myself but losing my independence has been a financial burden and makes me worry more & more for my future and how I may be able to support myself.
If I were to raise enough money to travel to India and attend the healing centre it would mean so much. I desperately want to help myself so I can live a happy and healthy life. I have so much love and compassion and would love to discover a treatment that could help those suffering with PLD and PKD that I could share and avoid major surgery.
Thank you so much for your valuable time. I wish you health, love and happiness.