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If you are reading this then you probably either have PBC or you have a relative who has been diagnosed with PBC. I have written this article specifically for close relatives of PBC sufferers in an attempt to raise awareness of this devastating disease. Some of you, sadly, are not supported by your familes, whilst others have tremendous support. I hope that those of you who would wish their families/friends/employers to understand the devastating effects of this disease better will find this helpful. This article is about my own experience with PBC, it is not intended to upset or offend any other sufferer. I am aware that not everyone is very sick and I do not mean to generalise.
One dark night, last November, I was running around my house like a headless chicken trying to stem the flow from a burst pipe under a concrete floor. An emergency plumber had been called out but the poor over-worked man was up to his ears in water on another job as I panicked and bewailed my fate. Where was the water coming from? What would happen to the carpet? How many more hours before the plumber arrived? As I snapped at my husband and children, deeply immersed in my 'problem', the telephone rang. My husband took the call and I heard him say, "Can you call back, we are waiting for the emergency plumber to call."
As his face fell I knew that something was wrong. The person on the other end of the line was my sister, Tracey. Tracey didn't call often, being so far away in the Middle East it was a costly pastime that was better utilised by the fax machine. I heard my husband say that she had better speak to me. As he handed me the phone I knew that something was seriously wrong.
In a split second, a million scenarios played themselves out in my mind. My immediate thought was for my three little nephews. Hal almost five, Charlie four and Kit not yet two. God forbid, had something terrible happened to one of them? I found myself silently sucked into a vortex of slow-creeping panic. Could the unthinkable have happened? Had my lovely brother in law who worked as a commercial airline pilot had an accident? Did Tracey have cancer? These were the terrible things that went through my mind in the milli-seconds that passed as my husband silently passed me the receiver.
Reality was replaced by the surreal as my sister's voice reached me over the thousands of miles that separated us. "I've got a terrible disease." Those words will haunt me for ever.
Before that night I had never even heard of Primary Biliary Cirrhosis. As my sister struggled to tell me what she knew about this terrible disease, I made my way into my dining room where I would be at least be able to hear her better. The combination of a long distance call, my sister's broken voice and the noise of my children didn't help matters. As I listened to the devastating news I found myself curled up in a foetal position on the floor with the phone pressed painfully to my ear trying to hear her words and absorb them and make sense of them. I was to remain in the that position for a long time after she had hung up. Hot, fat tears streamed down my face.
I felt completely and totally useless.
After I had spoken to her I immediately phoned a friend and asked for the telephone number of a mutual friend who was a doctor. I will never forget her kindness. Never mind that I was calling her on a much needed evening off, she immediately put my mind at rest and filled me in on what she knew about this disease. Before I hung up she advised me "Don't look it up on the internet, it will only make things worse".
Not having ever done what I was told, I did exactly that. Initially she was right. It did make things worse. I quickly found the PBCers Homepage and subscribed to it. When I received my first email from them I sat and wept silent, choking tears. In fact I sat and cried for a good two weeks as I read the information before me about this rare and unknown disease. I couldn't believe that my healthy, vibrant, sister had any connection to these terribly ill people. Surely there had been some mistake? I waited with baited breath for her to email me with the results of her blood tests.
As an instinctive person who relies very much on what she feels I just KNEW that she wasn't suffering from this alien, unknown disease. We had no family history of such a thing, there must be a mistake. I have since learned that my 'hunches' are not what I thought they are. The blood tests and subsequent liver biopsy confirmed that Tracey had PBC Stage 2. So much for female intuition.
How does it feel to know that your 'little' (38 year old) sister has a life-threatening illness? Let me tell you. It feels like somebody has come up to you out of the blue and punched you violently in the stomach. When people talk of 'body blows', I know exactly what they mean. The night I took that call, I felt that I had been knocked sideways and quite honestly,
I don't think I will ever forget it.
Still - I DON'T HAVE IT. Yes, admittedly it did occur to me that I COULD get it - but for the moment I don't have it. As devastating as it is to discover that your sister is ill, it isn't me that is filled with fear for the future. Not for me, the cold fear that strikes deep into the heart in the middle of yet another sleepless night. Not for me the tears secretly wept over your ungrown children. Not for me the continual doctor's appointments, the painful and terrifying tests, the endless drugs. Not for me the dragging of itching feet across cruel concrete and the permanent scarring of once lovely skin. Not for me the menstrual problems, the relentless itching, the demise of skin and hair. Not for me the denial of a glass of wine, the chomping of a juicy burger, the delights of a tandoori chicken. Not for me the endless fruit smoothies, vitamin supplements, non-fat, additive-free meals and carrot juice drinks. Not for me the drastic weight loss and the fear of waking one day to see yellowed eyes.
Not for me the trauma of a liver transplant. Not for me the panic of being a rare blood group. Not for me to see my strong, ex-Navy husband weep.
The truth is this. Sufferers of PBC may look and behave completely normally. My sister has never looked better. She is blonde, thin and disgustingly healthy-looking. When she walks down a street, into a bar or along a shopping mall, men turn and look twice (or three times). She is stunning. If only they knew...
My sister has Primary Billary Cirhossis. Without a liver transplant in the next ten years she is unlikely to survive. For all our childhood bickering, I cannot envisage life without her. Please do not underestimate the devastating effects of this disease.
Please Support Research into Primary Biliary Cirrhosis
Recycling works ...Donate your organs...And live again ...
