Kelly - A Noticeable Difference with a Liver Resection

ADPKD with severe PLD. A liver resection at the Mayo Clinic.

I have always known that PKD ran in my family. The chain goes from me to my dad, aunt, grandmother and great-grandfather. In fact, my great-grandfather has one of his cystic kidneys on display somewhere, because way back when, they didn't know what caused all of his kidney problems, so the solution was to just take it out. I guess they were impressed by what they saw. I am a young, early to mid 30's, working mom and wife, who was always active and proud of being in shape. I always had a wonderfully flat stomach, even after the birth of my first daughter. Four years later, after the birth of my second daughter, I knew that something just wasn't right. People would always ask me if I was pregnant, which I was not. My abdomen, especially higher up, around my rib cage area, was hard as a rock. It was getting bigger, but it wasn't soft like fat, it was hard to the touch. My husband kept telling me that I should go see a doctor because something had to be wrong with my kidneys, the cysts must be growing. I put it off because everything that I had read said that there was nothing that could be done, until my kidneys began to fail, at which point I could begin dialysis or wait for a transplant. Such wonderful options!

I guess I should explain that I have been a Registered Nurse for 10 years, so I was very comfortable reading and interpreting medical literature. I also began to Google my symptoms and discovered that my slowly developing symptoms: expanding abdomen, difficulty breathing, discomfort after eating, and inability to lie flat on my stomach were much more characteristic of PLD, rather than PKD. I had been told many years back that I had a few liver cysts, along with a few kidney cysts.

It was after a bout with some strange abdominal pain that I finally went to see a GI doctor. She ordered a CT scan and the scan showed that virtually my entire liver was filled with cysts. The word they like to use in the medical community is innumerable, as in way too many to count. She referred me to the liver transplant specialist to explore my options. He basically said that a resection was not an option for me, and that within about five years I would need to be on the liver transplant list. He offered to perform a laparoscopic cyst fenestration to give me some relief from the burden of all those cysts. This, by the way, was a very well respected liver surgeon at a large academic medical center, so I believed him. I remember sitting in the exam room and sobbing because I felt that my life was over. I was going to be chained to a transplant list, waiting for a liver that I would never be sick enough to actually qualify for.

The fenestration went great, and after about a week of recovery time, I was back to my normal life. I felt some relief for about two months. During this time I had refused to accept his transplant diagnosis. I was only 32 years old at this point, and I was sure that there had to be other options out there for me. It was at this time that I began reading about all of the wonderful care and options that people had received from the PKD team at the Mayo Clinic in Minnesota. I got the contact information and sent all of my scans out there to be looked at. Dr. Torres called me a few weeks later and stated that he and his team felt very comfortable offering a liver resection to me as a treatment option and felt that I was a great candidate, who would receive a ton of relief.

After fulfilling some family commitments, I traveled to Rochester, Minnesota for my liver resection surgery. The surgery went very well, I had very little pain. I did have a large amount of nausea for about three days after the surgery. Dr. Nagorney (liver surgeon) explained that my stomach was used to being compressed and now it has all kinds of room to move around and expand, so the nausea is very common. After a very uneventful hospital stay, I was discharged home on post-op day #6. The recovery was rough for a few weeks. Mainly, I was exhausted and would fatigue very quickly. This is common and expected due to the blood loss during surgery and the loss of liver tissue. However, I was never in pain and six weeks to the day after my surgery I went camping with my family and slept in a tent.

I write this and share my story to let others know that severe PLD is not a death sentence and to not accept the first doctor who tells you that you have no options. I have included some pictures of my liver before the resection and after. Best of luck to anyone reading this and know that you are not alone!

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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