By Christy Abele, October 2005
Email: christyabele@sbcglobal.net
My name is Christy Abele and I'm a newly elected board member and area contact for Northern California. I was diagnosed with Wegener's in October 2002, six months after the birth of my daughter, Claire. I had just turned 34 years old. As any parent can attest, the first year of parenthood is a beautiful but difficult time. Developing WG during the first year of Claire's life was particularly challenging. In fact, one of the most difficult parts of that year was the realization so shortly after giving birth to my daughter that I most likely would not be able to have another child. But as I write this today, three years later, I am eight months pregnant and eagerly awaiting the birth of my second child. Below is the story of my journey from diagnosis, treatment, infertility problems and miraculously, conception. I am not a doctor, or a researcher, just a Wegener's patient, and a mother, telling her story.
My diagnosis and treatment were fairly straightforward. I spent 4 ½ months on Cytoxan and high doses of prednisone. After Cytoxan, I stepped down to a less toxic, maintenance drug called CellCept. Knowing that I wanted to have another child, my rheumatologist thought that this drug would be safer for my reproductive system than Methotrexate. I spent the next 18 months taking CellCept, the last six of which I began the tapering off process. It was around this time that I started to get serious about having another child. I saw an OB/GYN whose specialization is women with autoimmune diseases. She did some hormone testing and we discovered that my FSH level was borderline high at 10. FSH (Follicle Stimulating Hormone) is a hormone which, when tested can tell you if/how well you are ovulating and even possibly how close a woman may be to menopause. At this point, I was still six months away from being off my medication, so there was nothing I could do.
Six months later, I was retested and my FSH was up to 30. I was shocked! How could my fertility decline so rapidly? I was given the news by a nurse who, to put it lightly, was not the most sensitive person in the world. She point blank told me that I would never have any more children. With those words, I stopped using contraception and was surprised to learn that I conceived a couple of days later. The only issue was that I was not completely off my medication. I quickly tapered off of CellCept. However, seven weeks later I suffered a miscarriage. I'll never know why I miscarried, but I vowed that the next time my husband and I tried to conceive, I would follow my doctor's advice. I would be off my immunosuppressant medication for at least six weeks (and in remission of course) before trying to conceive again.
A few months later when we began trying again, I started doing acupuncture and changed my diet. This was an attempt to naturally bring my FSH level down and possibly conceive. Western doctors will tell you that once a woman's FSH level goes up (and fertility declines) there is no way to reverse the process. I stuck to this strict regiment for three months and then had my FSH retested; this time it was at 42! At the age of 36, I was "officially" going into menopause. The doctor did an ultrasound of my ovaries and found very few egg follicles left.
The Cytoxan had definitely done a number on my reproductive system. While the medical community has made great advances in infertility treatments due to "structural problems", they haven't been able to figure out a way to preserve egg quality in women who are older or in women whose eggs have been damaged due to chemotherapy or other toxic treatments. The conversation with my fertility specialist quickly turned to egg donation and adoption.
Upon leaving the doctor's office, he handed me a prescription for a drug called Clomid, which is used to help a woman ovulate better. By ovulate better, I mean it helps the follicle inside the ovary to fully mature the egg that will be released in that month's cycle. The following month, I took the Clomid. I figured, what did I have to lose? Then the miracle of all miracles occurred, I became pregnant with our second child! As of this writing, I am 32 weeks along (8 months) and am doing great. I am having a very normal pregnancy. I have seen a perinatologist (a high risk doctor) once, my rheumatologist every few months, and of course my OB monthly. So far so good!
Conception after Cytoxan is possible although in my case, more difficult than before. There are some things to consider if possible, before starting treatment. For men, freezing sperm is a safe and relatively easy process (did anyone read Lance Armstrong's first book?) There have also been advances made in male infertility. In my research, I remember reading about a new treatment whereby an egg could be fertilized even using just one live, viable sperm. This would suggest that even men with low sperm count could potential father a child.
For women, it's obviously a little bit more complicated. Women with partners could consider freezing embryos before treatment. This process takes a couple of months however, and in many cases (including mine) there is not enough time. The doctors at Stanford University are developing a program whereby they can remove one ovary of a cancer patient before treatment, cryogenically freeze it and re-implant it after treatment. Today, they have had only one live birth from this procedure and the doctors aren't sure from which ovary the egg came. But, it's important to note that fertility issues in seriously ill women are being studied. In lieu of any pre-treatment options, my advice would be to stay in good physical condition, eat fresh fruits and vegetables and limit processed foods while trying to conceive. You may even want to try acupuncture to help with your fertility. I cannot discount its effectiveness in my own case. I can recommend some books on the subject to anyone who may be interested.
Once pregnant, there are a few things to consider. It is generally believed that in the case of women with other autoimmune diseases, 1/3 of women improve during pregnancy, 1/3 of women's condition remains the same, and 1/3 get worse. Due to lack of data, the medical community cannot say with certainty that the same is true for WG patients, but it's possible. So if you are in remission and in good physical condition when you conceive, you may indeed have a successful pregnancy. Factors such as kidney function play a major role, however. Women with compromised kidneys have a higher chance of developing preeclampsia later in pregnancy (weeks 24-26 are especially critical). Also, women with autoimmune disease are at a higher risk of having the placenta "poop out" before term. Non-stress tests of the placenta should be done in the last eight or so weeks of pregnancy.
My long and sometimes painful journey has enlightened me, and has led me to places I never thought I'd go. If I can help or even bring hope to one person by sharing my story, then my journey has been worth it. One of the most important points I'd like to stress is that just like with Wegener's, you must be your own best advocate when it comes to your fertility. Keep asking the difficult questions, keep researching, and keep hope in your heart. It is possible to conceive after treatment. If you have any questions, please contact me. It's been an honor and a privilege to share my story with you. Thank you.
Update from Christy. May 2007
I gave birth to McGregor Dean Abele on December 8th, 2005. Delivery was very normal and Mac is a healthy, happy 17 month old. Unfortunately, just like with my older daughter,Claire, my WG flared about 14 weeks post partum. My doctor started me back on Cellcept, but I successfully avoided prednisone. I battled arthritis for about 6 months last year but my symptoms have subsided. My numbers are in the normal range now and I feel great! I am currently on Cellcept but hope to taper down sometime soon. Life in the Abele household is chaotic, but we have lots of fun and laugh a lot.