Amy Thornton, a 37-year-old New Yorker, has been living with lupus since she was 14. Her lupus began with a butterfly rash across the bridge of her nose, and progressed to a variety of other symptoms in her teens and twenties, including joint pain, rashes, night sweats, hair loss and fatigue. In her early thirties, just as she was trying to start a family, she developed inflammation in her kidneys, known as lupus nephritis, and later suffered a heart attack. In this interview, Amy shares some of the hard decisions she has had to make in her life, and some of the ways she has learned to cope with lupus.
Can you describe how lupus affected your ability to have a family?
Amy: My first pregnancy lasted about eight weeks, and ended in a molar pregnancy where the baby does not develop. After that, I had swollen ankles and was retaining a lot of water. I assumed that it was related to after-effects of the pregnancy, but later found out that these symptoms were related to lupus nephritis. This was treated with pulse steroids, daily steroids, and other medications. Although many women with lupus have successful pregnancies my doctor suggested that we put our childbearing plans on hold until the nephritis cleared up to avoid serious complications. This was very upsetting, but we were hopeful that it was just a ?blip? and that eventually we would be able to try to get pregnant again. The nephritis cleared up, but it returned later. At this time, several doctors suggested that we consider other options for having a family.
How did you cope with this news?
Amy: Hearing that I should not have a baby was devastating. Although I had lupus for a long time, I managed to live a very normal life. I had played on varsity sports teams in high school, attended college and graduate school and held demanding jobs. This was the first time that I felt my lupus was having a major impact on my life. Nevertheless, my husband and I were determined to have a family, and got more information about both surrogacy and adoption. We found a surrogate mother through an agency in California and after five in vitro-transfers (a procedure in which our embryos are put into the surrogate mother), she became pregnant with our twin boys, Harry and Sam. They were born in 2001 on our ninth wedding anniversary.
How has lupus affected your family life?
Amy: Since the children are totally dependent on my husband and me, I am no longer working outside the home. Last year, at age 36, I had a heart attack, a result of premature coronary artery disease. Since then, I've had four angioplasties, a procedure that opens clogged arteries. During that period I had to cope with an additional chronic illness, and needed to rely on others to help me with the children. When I was recovering, I couldn't carry my children or push their stroller. I needed a strong support system during the day to help me manage, and often friends would come over at night to help put the children to bed. My husband took charge of the childcare responsibilities during my hospital stays and continues to do more than his fair share on the weekends, to ensure that I have time to rest.
What is it like to be young and have heart and kidney disease?
Amy: Heart and kidney disease are two of the more serious complications of lupus, and it is a bit frightening to have both at a relatively young age. Because of the heart disease, I am a bit more uncertain about the future. I take 10 medicines just for my heart, and these are all for the indefinite future. I have been lucky in that my kidney function has returned to almost normal after each bout with nephritis. Of course, I don?t know that this pattern will continue, but I remain hopeful that it will. However, it has been difficult dealing with the side effects of the medication I take for kidney disease, specifically the high dose steroids. I try to keep reminding myself that ultimately, I will be able to taper my medicine and begin acting and looking like myself again. Also, I try to counter the side effects by continuing to exercise to minimize weight gain and taking medication to reduce some of the emotional effects.
Want to share your lupus story? Email firstname.lastname@example.org.