Earlier in 2004 prior to my diagnosis

Late 2004 soon after the diagnosis of Polycystic Liver Disease

My youngest son in March 2007
My liver has grown more

LIVING WITH CYSTIC ORGANS - Karen

Here is Karen Little's story:

My name is Karen Little. I am 48, I live on the south coast of NSW, Australia and in 2004 I was told that I had a rare genetic condition called Polycystic Liver Disease.

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 they 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 the medical profession) seemed to have any information to impart.

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.

last updated: Tuesday, April 1, 2008 8:38 PM