Meg - Liver Resection

My liver resection surgery was November 25, 2003. I spent the better part of a year contemplating my navel-- literally. As my belly grew larger and larger with each passing month, my belly button became flatter and flatter. It was just about completely flat when we left for the hospital. When it was over, I looked down to see my oversized abdomen had disappeared as if by magic. What replaced it, unfortunately, was loose, flapping skin. As walked through the halls of the hospital, my abdomen jiggled with every step I took. Even worse, my belly button had become a sad little saggy thing which looked like the drooping eyelids of a basset hound.
I suffered many more indignities that year.
Throwing up and peeing a little every time I coughed or laughed too hard became a frequent occurrence. I took most of it in stride because it came with the territory. The day I looked down at my feet, swollen to two times their size, each toe looking like a Vienna sausage, I wept. They-my feet-- were all I had left that was pretty. My body was swollen and misshapen, darn it, I had pretty feet. Not that day, though, or for many days that followed. But even worse then the fat-feet day was the day that I nonchalantly asked the doctor about a redness around in and around my navel. And there it was-- perhaps the indignity of all indignities- yeast infection in my belly button. A YEAST infection in my BELLY BUTTON. Who every heard of such a thing?
A few months later I noticed a new wrinkle, not a wrinkle really, more like a little bump forming. Whenever I wasn't lying on my back, I now had an "outie". The doctor assured me that this was a normal development. They see it all the time. I was the proud owner of an umbilical hernia. Apparently, my intestines were trying to escape from my abdomen through my navel. I have a friend who puts band-aids on her nipples when she doesn't wear a bra. My navel, now about the size of a large nipple, stuck out firm and perky. The band-aid did the trick - at least for a while. When the bump could no longer be restrained by the force of a mere band-aid, a nurse suggested I tape a nickel over it. This worked quite well, and not only that, I could imagine in the grocery store line while the woman in front of me scrambled for an extra 5 cents to pay her bill. "Hold On", I'd say, "I have it right here". Then, with a dramatic flourish, I would lift my shirt, peel away the adhesive tape, and present the cashier with my nickel-saving the day. Soon the nickel became a quarter, and the adhesive started causing blisters. Not only that, it was purple-not a pretty purple, either--a blue-brown-bruise purple. Through not one, but four mounds of purple belly button, I could watch as my waist took a short detour too peer out of the translucent window of my navel's thin skin to see where it was eventually headed.

Eventually had to give up on the quarter, too. I was as thin as I had been in many years, but I had this belly button erection that I just could not control. The joy of feeling good in a bathing suit was curtailed by the pronounced lump protruding from my mid-section. If you've ever peeled and sectioned a navel orange, you have an idea of my belly button at its worst. The mini-orange within the regular orange with its own little sections and weird bumps-that was my navel-but purple. I'm telling you, whoever named the navel orange definitely had an umbilical hernia. Finally, after months of abdominal reconditioning, my navel returned to a fairly normal state. I wouldn't show it to anyone mind you, but at least it's not a change purse. There were other irritations over the year-nausea, vomiting, and cravings. One week I must have eaten a carton of cottage cheese every day. I sent my husband out in the middle of February to get me grape snow cones. The one place in town that made snow cones in the winter didn't have grape, but he was resourceful. It turns out that mixing the red and the blue together not only makes a pretty purple, but it also makes grape. Food aversions were perhaps the worst. For a while I couldn't even be in the same room with someone else who was eating--anything. I was also especially annoyed when people would pat my belly when they asked me when I was due. It was a long year with a lot of irritations, inconveniences, and indignities, Most pregnant women will tell you, however, that is worth it. The ironic thing is, I didn't have a baby. In fact, I have never been pregnant. . .I have Severe Polycystic Liver Disease.

A SUGGESTION FOR RELIEVING PLD PAIN

I've been having a lot of right upper quadrant back pain. As most of us have, I've had this pain for a long time--on and off. It is especially bad this week. I've tried massage, I saw my doctor who realigned my spine, and I still have pain. I decided to call my physical therapist from my rehabilitation after surgery. He explained that my rib cage is stretched out of place because because of my enlarged liver. This is causing the deep muscles to spasm. Apparently there are three levels of muscle over the rib. Massage helps the top layer, but the bottom layer is what causes the recurring pain. He suggested that I apply heat for 10-15 minutes. Then do this stretch.
Lie on your left side. If possible, put a pillow under your left ribs. Reach your right arm up over your head and extend. Bend your left knee, and extend your right leg straight down. You can lie like this for up to a half hour several times a day. This position allows the maximum expansion of the ribcage. Take deep breaths (as much as you can) and relax into this position. It is helping me a lot.
P.S. Last night I had my husband pull gently on my right arm while I was doing this stretch. Awesome!! CAUTION: Do only what your body can tolerate.

ADDENDUM

Let me start by saying that I am glad that I had resection surgery. I also need to tell you that I had a traumatic surgery and a long and difficult recovery. I have never been able to go back to work and I am now on disability retirement from teaching and social security disability. I still suffer from fatigue which is helped by a nap every afternoon. I also still have regular aches and occasional severe pain depending on whether I overdo it or not. Occasionally I still have a cyst rupture which is painful for a few days. I had pleurisy a few years ago which was caused by the rubbing between my liver, diaphragm, and small pleural effusion that still remains around my right lung. Even with all of that and knowing what I know now, I would still have the surgery because living the way I was living before the surgery was becoming unbearable.

I probably waited too long to have the surgery. My resection surgery was on November 25, 2003-- almost 6 years ago. I had my consultation with Drs. Nagorney and Torres and was relieved to finally meet some doctors who really knew about my condition. The Mayo Clinic is an amazing hospital; I refer to it as the Disneyland of hospitals. It is incredibly well run and the town exists to support the hospital, so everything is connected. My surgery went well in the liver resection aspect, but it took a bad turn when my IVC was nicked during the surgery. I bled a great deal and lost my pulse and blood pressure.

A cardiologist was called to solve the remaining complications. Surgery lasted 6 hours. As my husband and mother began to come in to see me, I crashed again--no blood pressure or pulse. A code was called and the doctors worked on me for 45 minutes. Obviously, I recovered, but my mother and husband spent a horrific hour wondering whether I would live or die. I woke up in the ICU with a tube down my throat--very confused. I spent 4 days there, then transferred to a regular room. I spent about two weeks in the hospital total. I did suffer. The surgery is the equivalent of being hit by a truck--at least mine was. But, by the end of the two weeks I was capable of coming home. Looking back on it, I wish I had spent another week there in a hotel near the hospital.

The trip back to Pennsylvania is a long one--12 hours total. I was doing well at home for a while, but in January I realized that fluid was gathering in my abdomen. I spent a week in a local hospital before returning to the Mayo for another week or so. That was my first bout with ascites. My IVC was compressed which was causing the fluid build up. I had a procedure to place a stent in my IVC to keep it open. The ascites continued after I returned. From March and April I went to the local hospital by-weekly and then weekly to have fluid removed. When the amount reached 8 liters, we decided it was time for another trip to the Mayo. In May I had a second stent placed in a hepatic vein which finally stopped the ascites. During these months, I became severely anemic as my body was not getting enough protein. I developed C-dif colitis and I then became allergic to the antibiotic used as a cure.

I was nauseated by food almost constantly. I didn't eat much. I weighed 173 when I had my surgery. At my lowest, I weighed 132. I was so weak that I couldn't even close the trunk of my car. In May I began physical therapy to rebuild my body. I worked on that until February of the next year. That is the time that I mark the end of my official recovery. It was a long and difficult ordeal both for me and my family. My mother moved in with us for 8 months to help take care of me and my family. Friends brought meals for several months. I have read on this group about many recoveries. With the exception of Diane, I think I may have the most difficult recovery. It isn't a pretty story, but you do need to know the risks. Again, I would do it again if I had to. I hope this helps.

WHITE BEAN PANCAKES

My sister-in-law figured out how to make pancakes that are made mostly from white beans. They are delicious. See if it fits into your diet.

Directions

Drain navy beans (or cook up dry ones). Place beans, hemp seed meal, and buttermilk in a blender or food processor. Blend until you have a creamy batter-like consistency. Remove to a large bowl. Whisk together egg yolks with the melted butter. Stir yolk/butter combination and egg whites, vanilla, almond extract, and honey into the bean mixture. Combine flour, baking powder, nutmeg, and oat bran. Add dry ingredients to wet ingredients, and whisk until just combined. Heat skillet and make just as you would pancakes. Serve with maple syrup.

Here is a bra I really like

Meg1

brokenplaces

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.

Medical Disclaimer