I was born in 1966 in rural South Carolina with what the doctors thought was reflux disease. Until I was two years old, I was treated for Asian flu. Then it was decided I had kidney disease. I was so small, weak, and sick that I actually slept in a crib until I was five years old. When I was five, successful surgery was performed to repair the reflux problem. Unfortunately, however, the scarring had already affected the kidneys.I was told I probably should not have children, but me being me, I had a beautiful daughter, Sarah Brianne, at age 21. When I turned 27, I began having difficulty with my blood pressure (BP). It was really difficult to control, and my doctors switched me onto a lot of different medications. I would go into the emergency room, and my heart rate would only be in the 30s. The doctors had a very difficult time finding something I could take that would not put me into a heart block. I was dizzy much of the time.I had been on the same BP medication for quite a while when, in 2000, I went to see my family physician, who decided to see what was happening with my creatinine. Back then, my creatinine was 2.5. This was after I had moved to Issaquah, WA.
My family doctor then referred me to a nephrologist. I saw Bruce O’Neill, MD, who is my current nephrologist at SwedishMedicalCenter in Seattle, WA. He started monitoring my condition and wanted to focus on getting my BP under control. He believed that would slow down the progression to kidney failure. We talked about end-stage renal disease (ESRD). The doctor said that, when my creatinine hit 4.0, I could go on the transplant list. My creatinine climbed quickly to 3.5.
The Pregnancy Issue
My husband, John, and I had been trying to have a baby for about three years with no success. With my kidneys failing, we knew this was a long shot and might push me over the precarious edge into ESRD. Dr. O’Neill was trying to gauge how supportive he should be to us having a baby, but, at the same time, was being realistic about our chances. He was concerned about what might happen to me if I got pregnant. When my creatinine hit 3.5, I stopped having my menstrual periods. I was then told I could not get pregnant, that it was virtually impossible for me to have our much-wanted baby.
Months went by, and still no pregnancy. Finally, my body would not ovulate; my reproductive system was shutting down. The doctors told me that, even if by some miracle, I did get pregnant, it would be detrimental to my kidneys. My husband and I tried to get on with our lives. I went on to develop ESRD and was in the process of going on the transplant list when life took another turn.
“A Day I Will Never Forget”
April 30th 2004 is a day I will never forget. I was feeling pretty miserable and decided to go get checked out.
“Any changes in your medication?” I was asked.
“Any chance you are pregnant?”
“No. I don’t have periods anymore.”
My doctor decided to be safe and do a pregnancy test. Moments later, she returned to the room with a sad look on her face. The test was positive. The impossible had happened. I finally had the pregnancy I had so longed for. I was informed that I should terminate the pregnancy right away. My creatinine was 3.5, and my kidneys would not tolerate the pregnancy.
Possible outcomes were presented:
- The baby would not grow properly
- I would not be able to carry the pregnancy past 16 weeks; and
- The baby would be born so early that it would be severely compromised both physically and mentally.
I don’t remember leaving the office or the drive home. I do remember the look on my husband’s face and the disbelief in his voice when I told him we were pregnant. We were essentially devastated because we feared what might happen. We had to make a very difficult decision. Should we go along with this pregnancy that we had wanted for so long? Or do we terminate it?
Everyone, including my nephrologist and a perinatologist, advised us to terminate. They didn’t even give us a lot of hope that the baby would make it past the first trimester.
What do we do? Where do we go? How can we make this decision? How could this be happening? We had wanted this baby so badly. Finally, we realized no one was going to make this decision for us. We had to decide on our own and live with the consequences.
We decided that if God had given us this opportunity, we should take it. Surely there was a reason and purpose for this baby in our lives.
“It Was the Craziest Thing…”
Actually, it was the craziest thing. My creatinine never went above 4.0 during the entire pregnancy. My BP never rose. Everything remained stable, and the doctors were amazed. How did I do it? The perinatologist said he didn’t even understand how the baby was growing or how I was able to continue working full-time. We just figured that God absolutely meant for us to have the baby.
I continued to work as a Nurse Manager in the cardiac unit at Swedish Medical Center in Seattle, take my medication, and worry over every ache and pain I felt. When I made it to 20 weeks gestation, I wanted to jump for joy, but took a nap instead. At 24 weeks, I started to have contractions and was put on bed rest. When I was about 26 weeks pregnant, I took leave from work and tried to manage everything at home. By 28 weeks, the contractions continued, and I was hospitalized.
As the days went by, my husband got up from his rollaway cot and went off to work. I would lie in bed, feel the baby move, and wonder what she would look like. What an incredible journey we were all taking! I was being closely monitored, and the decision was made to deliver at 36 weeks. My creatinine was 3.9, and everyone was completely amazed. No one could figure out how I had successfully carried this baby almost full term.
“A Day I Will Cherish Forever”
November 22nd 2004 is a day I will cherish forever. My beautiful daughter, Abigail Brenna, was born. She weighed five pounds, 12 ounces and was absolutely perfect. We had done it! We had our baby at last. Nothing in this world could prepare me for the moment I held her in my arms. It was like holding a piece of heaven and looking into eternity.
After Abbie was born, my kidney disease very rapidly went downhill. By the time the baby was five months old, I was very sick. The creatinine shot up to seven, almost eight. On May 2, 2005, I went on continuous cycling peritoneal dialysis (CCPD) every night of the week for nine hours. The staff at NorthwestKidneyCenter was great and so supportive. I felt wonderful. I was able to work and take care of my baby. The only drawback was that, when the baby cried or needed attention at night, my husband would have to get up with her because I was cycling. But John was just great about it.
“One Heck of a Kidney”
John and I sent out an e-mail to friends and relatives, informing them that I had to go on dialysis. My girl friend, Michelle Funtanilla, who lives in California, told her husband, Allen, that she wanted to donate a kidney to me, that she wanted to be tested even before I had to go on dialysis. Michelle said it was something she knew she had to do. Her husband, however, was very anxious and tried to talk her out of it. Allen was the best man at our wedding. He and my husband have been best friends since high school. John and I were married November 23, 1997, and Abbie was born the day before our seventh wedding anniversary.
Allen and Michelle came to Seattle for all the necessary testing. Although Allen still didn’t want Michelle to undergo the operation, he was nonetheless determined to support her in any decision she made. The date of the surgery was set for August 15, 2005, at SwedishMedicalCenter.
Michelle gave me one heck of a kidney. It’s working like crazy. In only 48 hours, my creatinine went from 7.4 down to 0.8. My creatinine had not been that low in over 10 years. Every time I see the transplant team, they express how happy they are with the way I am progressing. It’s just amazing. I feel like Michelle has given me a new life.
Now my daughter is 9.5 months old and learning to crawl. While Abbie is the supreme joy of John’s and my life, I still wonder how I will manage all that is before me. Given the opportunity to go back in time and change the outcome, I would not even consider it. When I see my daughter smile and eventually hear her call me “Mommy,” I know that my life is truly blessed. She is my “special someone,” my miracle from above that gives me hope and the courage to face whatever comes my way.
If I had any advice for other dialysis/transplant patients, it would be this: “Don’t wait until you are so sick that you feel like you just can’t go another step before you decide to go on dialysis. Once I did go on dialysis, I felt so much better. You have to get to a point where you know you have to give up control. You have to say to yourself: ‘I can’t do this anymore and have to go on the machine.’ It’s hard to make the decision to give up control, but I’m here to tell you it’s worth it. I went from throwing up every day and being so sick to having a quality life.”
All along the way, John has just been absolutely amazing. Both my parents are deceased, but my in-laws live about an hour from us. They have been very supportive and encouraging. My mother-in-law, Sandi Cap, stayed with me while I was doing my CCPD training because it was a very arduous week-long process. She also took care of Michelle after her transplant so she could get well enough to fly back to California. She is a wonderful lady.
About the Author
Denise Cap, RN, lives with her devoted husband, John, and their miracle baby, Abigail Brenna, and older, wonderful daughter, Sarah Brianne, in Issaquah, WA. Following her recent kidney transplant, Denise plans to return to her full-time position as a Nurse Manager in the cardiac unit at SwedishHospital, Seattle. She says she is “very family oriented and loves being outdoors and camping. I also love sewing and cooking and reading.” This article was originally posted on iKidney.com.
Article uploaded 1-10-2007
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