Karen - Liver Resection Australia

ADPLD Liver Resection in Australia..

My name is Karen Little. I am 48, I live on the south coast of New South Wales, Australia and in 2004 I was told that I had a rare genetic condition called Polycystic Liver Disease PLD. I was always fairly slim and in my late 30's - early 40's, I noticed that my abdomen was growing and that I was carrying quite a lot of fat around this area.
I put this down to getting a bit older, so started exercising and watching what I ate - but nothing made any difference.
By the time I was 44 yrs old, my abdomen was bigger but still looked like fat around my middle. I started having trouble with incontinence and lots of veins started appearing on my legs.
When I went to my local General Practitioner, he sent me for an ultrasound regarding the incontinence. Whilst there, the radiologist (with a puzzled look on her face) started running the ultrasound gadget around & up the side of my body.
She then left the room telling me that she would be back in a moment and returned with a senior member of staff, who had a look and promptly announced that these were cysts.
When my GP received the results, he said that he had never seen anything like it - and so began my journey into the world of Polycystic Liver Disease - where no-one (including many of the medical profession) seemed to have any information to impart to me.
I was referred to a hepatologist at Royal Prince Alfred Hospital in Sydney.
The Doctor nodded sympathetically, informed me that I could get as big as if I was having triplets and that nothing could be done except for a liver transplant - years further down the track, handed me a copy of the Blue Book, a book put together for transplant patients) and told me to go and buy some tents to wear.
I spent the 2.5 hour drive home with my husband crying and kept crying for a lot of the next year. Through a friend, I was introduced to meditation and qigong, which made me much stronger mentally and more able to cope with this growing liver that nobody would do anything about. After referrals to four more specialists (all who had varying degrees of nonchalance about this disease) and 3.5 years later, I have finally found a specialist that will perform surgical debulking I will have this procedure done hopefully later this year (2008).
Funnily enough, my surgeon is also a member of the transplant team, which my hepatologist is part of - why wasn't I referred to him before???? During my journey, I have been grateful to find Linda's Polycystic Liver Disease Support Group.This group has been such a wealth of information and support. It has allowed me to go armed with the right questions and to be informative to Doctors of any new research going on for Polycystic Disease (which most Doctors seem to know very little about).
When I rang to make an appointment with one specialist, he would not come to the phone, but told his secretary to tell me that this is a lousy disease to have. I agree that it is a lousy disease to have, but wouldn't it be nice if Doctors could be more informed about this disease before they speak. Do they honestly think, that because our livers are not failing, because we are not dying, because we are still able to function in a reasonably normal fashion - that it is acceptable for us to look this way and to put up with other symptoms that come along with this disease???
Hopefully the results of the Octreotide Clinical trial will prove positive. Already, liver resections being done at the Mayo Clinic in Rochester, seem to be having better results with other members of Linda's Polycystic Liver Disease Support Group. I am also hopeful that my up coming resection will have a long lasting result and that in the not too distant future, a cure or at least the possibility will exist of being able to take something that will suppress the growth of cysts in our bodies. I wish all of you with polycystic disease, good health and positive thoughts for your future.

ADDENDUM

Just thought that I would let you all know that I had my liver resection almost 5 weeks ago (September 2008) and am doing well. I feel really good in myself, but feel like I have been trampled through the middle by a herd of animals!! I was wondering how any of you went with driving after having a resection?I went for a very short drive to my local shops yesterday - about 150m - but find that I am very stiff and cannot turn comfortably to check behind me when reversing etc. I am not ready to drive any further that's for sure. I will be going back to work in a months time and it is a 20 min drive to get there - so I am hoping everything will be a bit more comfortable by then.

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We are  sharing our experiences with PLD Diet, an adjunct diet to consider  trying to complement a physician's prescribed medical therapy. Think  about testing this only with your doctor's prior knowledge, who can  adjust it, according to your own uniqueness by adding to your current  treatment.

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