I have been on the PKDiet, a plant based diet, an alkaline diet geared toward kidney and liver health, for 40 + years. The formulation of this dietary program is ever evolving, ever changing, as I try new foods and observe how a polycystic body responds.

PKD Diet began as a vegetarian diet. Then it changed to meat and vegetables. It changed again to vegetables coupled with whole grains. This catapulted me on another search to find different cooking practices to diminish the phytic acid content of natural complete whole foods, soaking grains, legumes, beans, seeds, and nuts. PKDiet changed eventually incorporating large quantities of raw vegetables and fruits. This resulted in a slow steady evaluation of non-cooking methods to optimize the pure flavors of foods. Among the many valuable techniques were those, that sought to avoid the production of alcohols, vinegars, and acid ferments. These were replaced by ferments that promoted formation of lactic acid. Lactic acid can be easily neutralized by the breath from the lungs without increasing the workload upon the kidneys.

Clearly the greatest changes have been since 1994 when my liver disease manifested aggressively. My current diet has been taken from different bits and parts of past diets as I continue to experience things with many foods and their current affect upon my polycystic kidneys, liver, and body. The results from this experiment of one are conclusive. It has made a difference, a real difference. I am alive today in an amazingly healthy body with excellent kidney functioning and a strong vital liver, with all of my own native organs and I feel great.

I do indeed have kidney cysts. I have a greater number of liver cysts. I have polycystic kidney and a severe manifestation of polycystic liver disease. Throughout my 60 + years, my body has gone through many shapes from being a full figured lady, to looking like I was 9 months pregnant, to a malnourished individual who looked like she just stepped out of a concentration camp, to a healthy vibrant body that I am very proud and more than happy to display in a slinky dress.

Both parents had PKD. Nearly all my relatives with polycystic kidneys had major events occurring around age 42 from kidney failure, nephrectomies, all ending in kidney disease death. My oldest sister died at 42 from PKD and severe PLD. My mother died at 42. My Father's sister had a nephrectomy at age 42. My Father, born in 1893, lived until 74 when he died from polycystic kidney failure. He survived lung cancer some 12 years earlier with an experimental surgery that removed as much of both lungs as possible, leaving a tiny remnant of lung tissue that surrounded his heart. My youngest sister died at 32 with invasive intraductal breast cancer; she also had both PKD and PLD. I am the only surviving living member of my family with ADPKD. I realize how very lucky I have been to have retained excellent kidney functioning, very good liver functioning without the need for blood pressure lowering medications. According to my doctors, In all likelihood, I will probably never ever need dialysis or a transplant.

My manifestation of this disorder has been an aggressive form of liver cysts which may in some ways, resembles the childhood form of Autosomal Recessive Polycystic Kidney Disease. I have not had the hard hitting kidney disease of my family. No family member has ever developed huge cystic kidneys; all went on to end stage renal disease.

I have been encouraged by these positive results that I have wanted to shout to the world that I now indeed can answer the question:

I have Polycystic Kidney Disease, WHAT CAN I DO TO HELP MYSELF?

Accolades go to my diet, lifestyle, and perhaps the luck of the genes that allows me to remain healthy. In the far distant past, each time I had occasion to speak with doctors, internists, nephrologists, I would ask this same question:

"What can I do?"—The doctors each gave similar responses,

"There is nothing to do. You are too healthy. We can provide help when you become ill. Then we have plenty to call upon to help you. We can treat your high blood pressure. We can put you on dialysis. We can prepare you for an organ transplant".

I did not want to wait until my blood pressure started climbing or until my kidneys started failing. My Irish stubbornness refused to allow me to sit by and watch my cystic liver steadily grow. I began experimenting; first with my diet beginning in my early twenty's. Now with 40 years of dietary modification, choosing foods that diminish pain, cysts, and symptoms from cystic organ disease, I am an example of what might be possible when someone with Polycystic Kidney and Liver Disease eats a modified alkaline plant based diet, the PKD Diet.

With the clarity of imaging studies today, polycystic kidneys and polycystic liver may be discovered long before young individuals have emerged from the womb. There is a growing body of people much much younger than previous generations with polycystic kidneys and polycystic livers. This current generation with Cystic Organ Disease are more curious and better informed in that their cysts have been discovered at a much younger age. This is a song of courage to each and every one of you who would envision hope that you can live your life fully in health or that there is the possibility of life without dialysis or transplant.

Twelve years ago I became extremely ill from my liver cysts. You are probably thinking if I knew so much about diet, why in the world did my liver get so sick? It is partly due to my vanity. I received an invitation to my 30th high school reunion. I decided to work out twice daily doing aerobic exercises. To my thinking an organic juice fast would easily get me trim and lean. For three months I drank nothing but bottled organic juices. My liver began growing like crazy. This was the fastest growth spurt I have ever experienced with my liver (... and this is how I looked ...). I have since discovered why. All bottled juices sit a moment or two before while they are heated to destroy bacteria. This sitting allows a sort of a yeast fermentation to begin, much like the yeast formation that comes about from making wine or ale. I was ingesting a form of alcohol repeatedly several times a day. To show you how vain I am, in addition to drinking nothing but bottled juices for three months, I also purchased for myself a corset that could be cinched very very tightly so I could wear a dress which would give the impression that I had a tiny waist. Well, this caused one of my liver cysts to burst. 

It was at this time that I found Dr. Jared Grantham (University of Kansas) and Dr. Vicente Torres (Mayo Clinic in Rochester, MN), two very fine gentlemen from the USA, who have an easy manner and vast amounts of knowledge and experience to call upon when someone needs help with polycystic organ disease. Dr. Torres recommended liver surgery, but I did not want to listen. I still wanted to try to correct the situation myself, try some alternative treatments. I ate a purely vegetarian diet and for the first time I began testing my urinary pH. I thought that a vegetarian diet that would alkalinity was best. I read a few medical papers and started testing in earnest. The alarming rate at which my liver had been growing decreased, in fact there were times when it shrank back a little, but gradually over the next four years my liver grew and grew and grew. Coincidental to my enlarging liver, there was a sharp decline in kidney functioning. My health deteriorated badly. I could not halt or reverse the process begun by the bottled juice fast. By 1998 it became imperative that I have surgery.

A massive effort from all sources was required to get through the liver surgery and to bring myself once again to health. The doctors will tell you over and over again that a cystic liver will rarely fail. Liver enzyme studies will become a bit wonky in only extreme cases such as mine. I had 3/4ths of my liver removed, my gallbladder removed, my ovaries and uterus removed. Thirty-nine pounds of organs were removed in one fell swoop. The surgery took 8 hours, with a team of 5 doctors from the Mayo Clinic in Rochester, Minnesota. I will always remember being wheeled back to my room, looking down at my belly which was now concave. It was not only flat, it was going inward, like a muffin tin before it is filled. For the first time in several years I inhaled deeply filling my partially collapsed lungs with a full luxurious breath of air. I was famished, a first for me for several years. It took two nurses to bring into my hospital room all the trays of food I had ordered. I was so happy to be able to eat and breathe once again. I really missed doing those things.

The next morning I got out of bed and took a few short walks with a hospital walker that held my intravenous solution. There was no pain from the surgery, none. Wonderful! The fabulous anesthesia department had placed an indwelling catheter into my spine. I was numb all over my belly. This was very good, for I was unable to tolerate any pain medication. Medications seemed to give me wave after wave of nausea, followed by the dry heaves. As I took my walks along the hospital corridor, I thought of myself as elegantly gliding along. My husband told me later, that I could barely hold my wobbly head upright, but I looked so incredibly happy.  I had pictured myself recovering from this surgery in two weeks time, tops. I had a much longer recovery time.

I was shocked to discover that following my liver resection I developed a very rare complication called Budd-Chiari syndrome or Hepatic Venous Outlet Obstruction, HVOO. Following the removal of my liver drains, my belly filled with fluid and I had to have repeated belly taps to drain off two liters of fluid every few weeks. Each liter of liver cyst fluid was filled with about 40 grams of protein. Both lungs also filled with fluid. I remember watching an imaging study of my lung as it was flipping rapidly in a fluid filled bath. I felt so sorry for my body. It seemed to be putting out the maximum effort it possibly could to keep me breathing. The surgeon was prepared to proceed with a second surgery to correct the situation. There were some risks. I had been referred to a liver transplant doctor (hepatologist). I had only one remaining hepatic liver vein. If during this second surgery, this one vein became scarred, than I would require an emergency liver transplant. I would go to the top of the transplant list immediately. Unlike with the kidneys where dialysis is a possibility, with the liver, at this time, this was not possible.(since then I have read, doctors have developed a liver dialysis machine).

My one liver vein was becoming more and more obstructed by a cystic section from my liver remnant. This portion of the liver had several tiny champagne grape-size clusters of cysts contained within it. These cysts surrounded the vein and continually pressed and squeezed against it, blocking the blood from flowing freely. The vein tried very hard to move the blood along but what was needed was a new network of smaller veins channeling the blood flow around this obstruction. Working steadily with my doctors, I utilized all the ideas and energy I could to help propel me through this —exercise, diet, medications, treatments and a few well chosen herbs and foods. I coaxed my skinny muscle-wasted body to build new blood vessels around this crimp in the vein.

I was so very weak, I could not even think clearly. I had to minimize the amount of energy I put out to make my needs known. I thought about newly born babies and how rough they have it. They can only cry or laugh to let their needs known. I had speech, movement, writing, all sorts of tools available, but at one point all I could do was cry. I was so uncomfortable. I felt helpless, and worse of all, I felt useless. I pulled my energy inward. Weak and fragile as I was, I knew somehow this was what was required so I would heal. I slept continuously.

I used all that was available to me. I climbed onto a machine called the stairmaster. At the beginning I was only able to use the stairmaster barely for three minutes. My body was totally draped over the machine for support. I had not even enough muscle strength left to swallow medication. I could barely hold my own head upright. I pumped the calf muscles of my lower legs, assisting the blood to return to my heart. By doing this I push-started the circulating blood to increase its pace. Exercising my calf muscles caused my pulse to quicken giving additional counter pressure to speed the blood flow forcing it past the obstruction.

My remaining 1/4 liver remnant had not yet begun to fully function. My liver was unable to store any nutrients to be used at a later time. What I ate in the moment was immediately taken up by the body. Later when I wanted to stretch or walk there were no reserves for the body to pull on. The body started depleting my protein stores for energy ( my fat stores were long gone) . It took from the butt and thighs. Within two weeks time, I had gone from thunder thighs (due to heavy edema and swelling pre-surgery) to scrawny chicken legs. I was a walking skeleton, looking as if I had just stepped out from a concentration camp.

My trust never wavered. I knew I would make it. I was hit with waves of nausea and vomiting every day for 6 months. This was hardest on my beloved husband. He would try to leave food for me to eat, but the nausea was so overwhelming it was impossible to keep nourishment down. I spoke with my doctors almost daily. They were all an unbelievable support team for me. I could never have done it without each and every one of them. The doctors started hyperalimentation on me. This was given via an intravenous catheter threaded through a vein near my clavicle in my chest. My arm veins had gotten so tiny, it was not possible to use these veins even for the daily drawing of blood samples. Continuous nourishment in the form of fats, proteins, carbohydrates, vitamins, and electrolytes were pumped into me. I was allowed carte blanche to eat any food I desired. This was the only way to effect a weight gain until my remaining liver remnant could begin working once again. My weight was 87 pounds and dropping. I became too frightened to get on the scale. Three days later my potassium shot up to 8.5. I was taken to the emergency room and admitted to the intensive care. I had barely recovered from this when the Budd-Chiari hit full on. That’s when I got very serious about my health. I knew I did not want a liver transplant.

My husband purchased a special chair for me called the zero gravity chair. It tipped me upward so my feet were elevated above the level of my heart. Then several different buttons could be pressed giving the body varying types of gentle massage. The chair also heated my weary muscles. It was a delight. I forced myself to walk as frequently as I could. I had physical therapy come over to aid me in exercising. I was so debilitated that I developed a bed sore, a pressure ulcer. I required help to take a shower each morning. I did not have the strength to place the washed clothes in the dryer. They were much too heavy. I was totally lacking in energy. My blood sugar would drop and I would get the shakes.

Physical therapy came to my home several times a week. They brought some rocker shoes for me. These stretch the Achilles tendon and the biceps tendon and the hamstring of the lower legs, forcing the thigh muscle to fire so that there is less thigh muscle wasting. This exercise works for painful and weakened knees by rebuilding the support muscles.

I persisted with all my treatments. Some close friends have affectionately called me the sweet mule. Stubbornness is a trait I strongly possess. This stubbornness is transformed when I need it, into perseverance. I am like a little Chihuahua that will not let go until the situation is remedied. I daily utilized saffron tea, made fresh cabbage juice with almonds, took milk thistle, organic turmeric, artichoke, iron, B complex, B6, B12, folic acid, and rose hips vitamin C. The result was overwhelmingly positive. When the date came about for my second surgery, I no longer needed it.

My surgeon, Dr. Nagorney, ( has golden hands when it comes to operating on a highly vascular polycystic liver) had written a paper reviewing patients who developed this rare Budd-Chiari complication. There were only ten examples of such patients from around the world. Of the ten, 8 died. Two others required creative shunting procedures done by my surgeon. They are both alive today. I am the only patient he has ever heard of who spontaneously resolved the situation. The doctors were ecstatic! I was successful in getting my blood vessels to lay down new pipeways to transport blood around the blocked vessel. A year later, the radiologist was kind enough to show me on my MRI that the body had enlarged certain vessels and had made new vessels around the obstructed vein. Here is Dr. Nagorney's long term follow up paper on The Mayo Experience with Liver Resections for PLD Polycystic Liver Disease.

Both my kidney cysts and liver cysts are totally stable. There has not been any cyst growth since the surgery. My rib cage is permanently deformed from the huge liver I once had. My right lung remains partially collapsed. But for my surgical scar, (which is barely visible in a bikini), one would never know I was snatched from death's door just in the nick of time. I overcame a life threatening illness. I am now absolutely healthy. I am the jump to human clinical trials with alkalinity. I am living proof that long term use of the PKD Diet works. I took the jump, and I have made it!

Change is possible.

Diane 12 years following her liver resection, looking healthy at 62 visiting the Philippines Islands.

ADDENDUM

I can freely travel around the world and just finished a two year double blinded clinical trial with octreotide, an experimental drug that decreases both liver cysts and kidney cysts. The results of this clinical trial are still pending and will not published until after the end of the trial in April 2010. I am very hopeful that this drug will be useful for many of us with polycystic liver disease and with polycystic kidney disease.

A paper from Dr. D M Nagorney about the Mayo Clinic experience with Polycystic Liver Disease PLD and Liver Resections, The Mayo Experience, has been accepted for publication. He is a very skilled surgeon, the tops for performing a liver resection for PLD polycystic liver disease.

It has been 12 years since my liver resection and my liver cysts have not re-grown. I travel easily. I continue to restrict caffeine, animal products, estrogens, false estrogens, xenoestrogens and estrogen disruptors. I rarely experience pains within my cystic liver remnant.

How are my kidney cysts doing? The function is improving as I age – Unheard of with PKD Polycystic Kidney Disease. I do not require blood pressure medication to keep my normal blood pressure in the range of 110/70 - 120/80 range. I do restrict salt using a very tiny amount of Himalayan Crystal Salt in my baking. I use less than 1/8 of a teaspoon per day. I am still on a neutral protein diet calculated at 0.6 grams of protein per kilogram of body weight. For me this is about 30 grams of protein daily.

I drink about 3 liters of water daily adding one drop of solé to a full glass of mineral water each morning.

For me this has been a life changing experience. I have often thought if my liver did not grow so extensively and so quickly that it forced me to pay attention to it, I would be less healthy today.

I live near the ocean (about two blocks) and walk to the gym each morning for some gentle exercise. Then sit down to a breakfast of locally grown fruits, 5 roasted almonds and a cup of roasted grain beverage. Lunch is usually an all greens salad. Several snacks throughout the day consisting of fruits and vegetables all locally grown. Dinner is usually root vegetables roasted, steamed, or sautéed, with some leafy greens, sometimes spelt, rye, or corn grains, without using any yeast. I am constantly snacking in between meals.

Just back from California Wine Country in Napa, Sonoma, and Mendocino and Paso Robles and Santa Barbara and Santa Cruz Mountains. I spit out the wine for a tasting. It was a second honeymoon for my husband one we both enjoyed. After seeing the movie Bottle Shock, I had to sample these wines that beat out the French wines in a blind tasting not once (1976) but twice again in 2006. I tried to not swallow any, but some was just so very delicious. I am especially fond of Navarro Vineyard Gevertztraminer grape juice. It has a taste similar to a fine French Sauterne –Chateaux d'Quem.

My husband is a gourmand. I am a vegan. We tend to complement one another. Viva la différence!