PRAISE FOR The Queen of Lemonade
"The Queen of Lemonade is an inspiring account of one woman's battle with a potentially fatal disease as told through narrative and e-mails. If anyone can turn the lemons of life into the sweetest lemonade, it's Kim Ponce."
-TAMARA LEIGH, AUTHOR, LEAVING CAROLINA AND NOWHERE CAROLINA
"You are invited on a journey. The Queen of Lemonade provides a rare glimpse into one woman's travel through diagnosis and treatment. Told in first person, this narrative uses scripture, humor, and theology to carry the reader along through this personal experience. Difficult subjects are handled with honesty and grace. You will laugh; you will cry; you will smile. The Queen of Lemonade came by her title honestly-she earned it!"
-PASTOR LEWIS GROCE, AUTHOR, FEAR NOT! A LAYPERSON'S SURVIVAL GUIDE TO THEOLOGY
In 1996, Kim Ponce said a prayer. She yearned to be closer to God. In The Queen of Lemonade, Ponce shares her story of how God answered her prayer-but not quite in the way she expected.
From an early age, Kim suffered from failing health. At just four months old, doctors diagnosed her with a heart condition. At six, in 1974, she underwent heart surgery. She recovered, grew up on Long Island in New York, and attended Emerson College in Boston, where she met her husband Michael; they married in 1992 and now have two children. But in 2001, Kim and her family suffered a setback. After attempting to donate blood, she learned she was infected with Hepatitis C.
Through narrative and reprinting of a series of weekly e-mails sent to her family, this memoir describes Kim's battle treating the disease with a forty-eight week antiviral therapy. The Queen of Lemonade also recounts her tremendous personal spiritual journey and the many lessons she learned about the way God works in people's lives.
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The Queen of LEMONADE
By KIM PONCE
iUniverse, Inc.Copyright © 2011 Kim Ponce
All right reserved.
Chapter OneBlessed from Birth
"I am your creator. You were in my care even before you were born." Isaiah 44:2 CEV
AWAITING HEART TRANSPLANT OPERATION Kimberly Ann Raquet, daughter of Walter and Kristine Raquet is still a patient in Meadowbrook Hospital. The surgeons are now awaiting a donor in order to perform a heart transplant. Kimberly Ann will be four months old on July 5th. Let us all remember her and her young parents, as well as her grandparents, in our prayers. (From the bulletin July 7. 1968 —Christ the King Lutheran Church in New York)
In what can only be described as the mistake that may have saved my life, my mother told the nurses that I was allergic to everything except for bananas. The nurses fed me peaches, the night before my operation. I broke out in hives, which began to bleed and became infected causing the doctors to cancel my heart surgery. (I don't recall any successful heart transplant surgeries until years later.) God does not always give us what we pray for but he ultimately knows better.
THANKS The Raquet family wishes to extend their sincere thanks and appreciation to all who have been remembering Kimberly Ann Raquet (infant daughter of Kristine and Walter Raquet) in their prayers. God has been good, and the doctors feel that Kimberly is progressing so well that an operation will not be necessary. They feel that she may outgrow her heart condition. She is gaining slowly, but is a happy and alert little girl, who wins the hearts of all who see her. We offer our thanks to God, and ask that you pray that she will continue to "grow in strength, wisdom and stature with God." (From our church bulletin September 1, 1968-Christ the King Lutheran Church in New York)
Just before my sixth birthday, my parents were told that I needed open heart surgery. They were informed that if I didn't have it, I would probably only live a couple of years. With the surgery, there was a 60 percent chance that I would live to adulthood. They waited until just after my birthday before they checked me into the New York University Medical Center.
My parents tried to prepare me for the hospital stay. They told me it was like a giant pajama party. I was in the hospital for three weeks in April of 1974. My parents lived in East Northport on Long Island. They had to travel two hours into New York City to visit me. My younger brother was not quite five and my little sister Merridith was now two and a half so they were not allowed to visit.
Doctors Spencer and Reed performed two surgeries on me that same day that had never been performed together. One surgery was to correct a mitral valve that was staying open instead of opening and closing. Because the valve had stayed open so long, I had an adult size heart at age six. They also had to add in a missing portion of my aorta artery. They would use one of the other arteries from my body. The surgery lasted fourteen hours, they had to refill my body twice with blood. Dr. Spencer would eventually publish a record of my surgery in a major medical journal. The day of the surgery it took eight nurses to hold me down to give me a shot. For years, I would despise the smell of rubbing alcohol and shots. My church held a twenty-four-hour prayer vigil for me. I still have the sign up sheet.
The surgery went well. I was in the recovery room after the surgery when I sat up pulled out my breathing tubes and said, "You are all fired because I missed Carrie's birthday party." They immediately got my tubes situated. My mother almost passed out upon hearing the news. My cousin Carrie's birthday is April 11. Although I did miss her birthday party, my parents snuck Carrie and my brother Andrew in through a freight elevator. I still remember the tears in my eyes as I greeted them. When I was in recovery, members of my church visited me and gave me a sack filled with toys. The people at my dad's office chipped in and bought me a small black and white television.
Eventually, I returned home and recovered. I began to thrive. I no longer needed medicine for my heart. Every year, I had to take the train into the city to see my pediatric cardiologist, Dr. Eugenie Doyle. I still remember holding my mom and dad's hands as they helped me step onto the Long Island Railroad. After the visit, we would have lunch at a fancy restaurant in the city. I went every year for a long time and then every two years. I don't remember anything about my recovery at home.
My final visit was when I was in college. Dr. Doyle thought I should undergo a stress test to see if my heart was strong enough to have children someday. At the time, that was the furthest thing from my mind. So I sat there waiting in a room full of children wondering if I would be able to have my own someday. It had never occurred to me that I might not be able to. At a later date, I came into the city again to have my first Thallium Stress Test done. It consisted of my walking on a treadmill as they increased the incline and the speed while I had a needle stuck in my arm. At one point they injected the radioisotope thallium into my bloodstream. I joked the whole time with the techs saying it was like shopping when there was a sale at Macy's and the store was about to close. After the injection, they let me cool down, while they watched the dye move around my heart. My prognosis was great. Now I just had to finish college, get married and have kids.
Growing up in New York on Long Island, I never would have guessed I would someday settle down in Tennessee. I met my husband while I was in college. I debated for Emerson College in Boston. He debated for Suffolk University in Boston. We first met at a tournament held at Ithaca College in upstate New York. My coach introduced us. Michael has the biggest smile you have ever seen. Whenever he saw me he would smile. Two years later he asked me out and the rest is history.
We were married in 1992. Michael graduated from Tulane Law School in 1993 and we moved to Tennessee just outside of Nashville so that Michael could open his own law practice. In 1999, we had our first son Michael Augustus. In 2001 we had our second son Alexander. They are healthy, energetic, funny and smart. In other words ... a handful. One is quiet. One can't stop talking. They both love to travel and they get along pretty well for being brothers. My in-laws come to visit us about once a week. The kids call them Mama Bear and Pop Pop. The kids call my mom and her husband: Mama Tina and Grandpa Frank. And my dad and his wife are called Grandpa Walter and Grandma Nancy. So now you have met a good part of my family.
And here I am thirty some odd years later to tell you about how God changed my life again. Back in the winter of 1996, I had started with a different Sunday school class. This class seemed to know everything about the Bible and God. I immediately let them know I was in Bible Kindergarten comparatively. They loved me anyway. One day after a particularly good service and class I said a prayer. I prayed that I could get closer to God. I desired that strong relationship that others in my class seem to possess. I already had a very strong faith from all that I had gone through as a child. Now it was time to get closer to God and take my relationship to a new level.
On September 11, 2001, when the Twin Towers (the World Trade Center) collapsed after having been hit by terrorist piloted airplanes, I watched in horror with the rest of the world. My father had once worked at Cantor Fitzgerald (one of the firms on the top floor.) He lost forty people he knew on that day. My great-grandfather, Julius Sjulin, a Swedish immigrant had been an ironworker for Bethlehem Steel. He had worked on the Twin Towers on the basement floors just before he had retired.
I thought about donating blood during the aftermath of the disaster but the lines were so long and my son Alex was just a baby. About five or six months later, I was visiting my husband's office and saw a Red Cross bloodmobile parked out front and thought, "AHA! This is perfect. Now I can give blood." So I filled out the paperwork, gave blood and happily left knowing that I had done something.
Several weeks later I received a letter in the mail from the Red Cross stating that they were unable to use my blood because it had antibodies for hepatitis C. I couldn't believe it. I looked it up on my computer and was quickly horrified about the silent killer hepatitis C. I told my husband when he came home. He called his dad who is a doctor. My father-in-law suggested that I probably picked up the disease from my blood transfusions during my open-heart surgery when I was six years old. What irony that the surgery that saved my life was now the source of a potentially fatal disease! But I know God has a plan, a purpose for me.
My father-in-law suggested that we run a liver function test to see if the disease damaged my liver. Hepatitis C can hide in your system for years without producing a single symptom. It can attack your liver and then stop and go into hiding again. The treatments listed on the Internet give you flu-like symptoms, make your hair fall out and lots of other unpleasant stuff. My husband and my children were tested for the disease and they were negative. My liver function test came back normal. So my father-in-law recommended that we test it every six months and that I should stop drinking alcohol and stop taking Tylenol.
So I did. Nothing happened. Eventually, I had a glass of wine every now and then. So for the next four years nothing else happened. I even convinced myself that I didn't have the disease, just the antibodies for it.
Then one hectic Friday before Memorial Day Weekend in 2006, I was speaking with my father-in-law about our plans for the weekend, when he started talking about some articles he read about using chemo to treat patients with Hepatitis B. I was confused. I said, "But Pop Pop, I don't have the disease, I just have the antibodies." He said, "No. You have the disease." He proceeded to tell me that I should probably have more testing done. I was so furious. I hung up the phone on him. Then I called my husband and began sobbing into the phone, all the while trying not to let my kids see me upset.
My husband raced home and listened while I relayed the conversation. He called his father back. He reassured me that nothing new had shown up on my recent blood work. We decided to consult a liver expert. Almost a month later I met my new gastroenterologist at Vanderbilt University Medical Center. We will call him Dr. Mike. After I waited for an hour in the patient room, he came in. He asked me a bunch of questions and asked me if I had any questions. He also explained how hepatitis C worked. He told me the disease itself is not what kills you. It is your immune system attacking the disease, which causes the disease to make scar tissue to protect itself. This scar tissue is called cirrhosis of the liver (scarring of the liver). So if your immune system doesn't mind it being there, it can live in your system, literally for years. I explained that since I am not an IV drug user and had not prostituted myself that I probably received the disease through the blood transfusion during my open-heart surgery.
"So what do we do now?" I asked. He said, "Well, first we have to determine which type it is. There are three types in the US: Geno Types 1, 2 and 3. Types 2 and 3 have an 80 percent chance of being cured through six months of antiviral therapy. Genotype 1 is what most people have and it is only 40-50 percent curable with 12 months of antiviral therapy." He also wanted to determine how active the virus had been and to see if there had been any damage to my liver. So I had to have a blood test and then pending the results go for a liver biopsy. If I had Type 2 or 3, he said he would highly recommend going on to the antiviral therapy. He also suggested that I get a CT scan of my liver to get a gross picture. I felt good meeting Dr. Mike. I felt relief in that now I had a plan of action. I stopped off to have my blood drawn and headed home.
I have always been bossy, aggressive and a bit of a control freak. I am the kind of person that gets things done. The way I deal with stress is I always have a plan. Sometimes I even have a plan B and a plan C. I find if I have a plan, a strategy for addressing a problem then I can stop worrying about it and go on with my life. So I don't generally get anxious about things. I just make a plan.
A week later, my husband watched the kids while I went for a CT scan of my liver. It was quick and easy, not painful other than the prick of a needle in my arm in order to run an IV. During a CT scan, they lay you down flat, place an IV in your arm and tell you to raise your arms above your head while you gently slide into what looks like the center of a metal donut. A special dye is injected into your body through the IV, which makes you feel extremely hot for a minute or two. They ask you to hold your breath. Lights on the donut whirr around like a carnival game. Before you know it the technician says "breathe" and you are backed out, disconnected and free to go.
I had called Dr. Mike's office earlier in the week to find out the results of my blood tests. My cholesterol, white blood cell count and liver enzymes and such were all normal. The hepatitis C count (known as the viral load) was over 3,500,000. I asked the nurse what was normal. She seemed surprised and said zero was normal. "Oh, of course," I said. It would still be another week before I found out which type I had. I asked her to call me when she knew. I got the call a week later on a Friday. She told me I had Type 1 hepatitis C. She told me the doctor would write me a follow-up letter, but he was going on vacation so it would be two weeks before I probably received it.
So I had the information I needed ... the dreaded Type 1, harder to cure than the others, a year of antiviral therapy (that only cures half of those who complete the treatment.)
Two weeks later on a Monday morning, I was scheduled for a biopsy. I was feeling ok about it, not really afraid. Mostly I just wanted to know more information about how my liver was faring.
Dr. Mike explained that he would insert an instrument into my liver and it would extract a small sample of my liver. He also explained that sometimes people felt pain somewhere else on their body instead of the liver. Once they examined the liver they would know if any damage had been caused, which would help me to decide whether or not to get treatment.
Soon they had inserted the special tool for taking a nick out of my liver. The doctor told me he was about to do it. OW! It felt like he had sucker punched me. It was horrible because now I was about to cry and felt nauseous. My right shoulder also hurt for some reason. The doctor left with his sample as I watched him through teary eyes. I asked one of the nurses to get my friend, Vandana, who brought me. Eventually, she was allowed back in. I felt such relief seeing her so I let her distract me. Then I tried to rest. Later on she brought me home and stayed for a while. I felt much better.
On Thursday, I received a call from the nurse at Dr. Mike's office saying they had the results of the biopsy. I had stage 2 inflammation and stage 2 scarring of the liver. So the next morning, I sat waiting for Dr. Mike a little bit less calm than the last time, wondering what my future would be.
Chapter ThreeMy Future Revealed
Dr. Mike told me that my liver had stage 2(out of 4) scarring of the liver and stage 2 inflammation. My viral count was high too. So the disease had affected my liver. Dr. Mike explained my options: I could start on antiviral therapy, which consisted of Ribivirin pills every day and once a week shots of pegylated interferon. I would be on the therapy for forty-eight weeks even if the virus cleared within the first month. The side effects include: flulike symptoms, fevers, aches and pains, hair loss (Dr. Mike said it was more like hair thinning), abdominal pain, diarrhea, depression, loss of energy, nausea and more. I began to tear up. I started thinking of my son Alex who had just started kindergarten. I thought of being too weak to help out in his class. I thought of missing field trips. It was too much and I started to sob. I didn't want to miss out on all of Alex's firsts. I had been at most of Michael's field trips and had scrap booked his entire kindergarten year.
Excerpted from The Queen of LEMONADE by KIM PONCE Copyright © 2011 by Kim Ponce. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Part 1 Blessed at Birth....................1
Chapter 1 The Unsuccessful Transplant....................3
Chapter 2 The Surprise Diagnosis....................7
Chapter 3 My Future Revealed....................11
Part 2 My Spiritual Journey during Treatment....................17
Part 3 Recipes for a Joyful Life....................93
Chapter 4 Joy Is Part of God's Plan....................95
Chapter 5 Leaving Hell Behind....................99
Chapter 6 Avoiding Big Inconveniences....................101
Chapter 7 Mistakes....................108
Chapter 8 Removing Roadblocks....................111
Chapter 9 Intentional Kindness....................115
Chapter 10 Welcoming One and All....................119
A. I. How to have a World Peace Dinner Party....................125
A. II. How to have a Life is Sweet Party....................129
B. Facts about Hepatitis C....................131
C. Financial Advice for Kindergartners....................137