A New Lease on Life

By David Ray Cosner,

 

This essay was written for a high school assignment.

(l-r) Dylan and David CosnerIt was a hot July summers day in 2006, I could hear the engines of the Moto GP bikes in the pits, the gut wrenching rumble of 250 horses zooming around the track at over 200 miles per hour. My family and I were on our summer vacation through California, our last stop was at the 2006 Red Bull U.S.G.P at Laguna Seca. I have been waiting for this vacation for years, and it was finally here. Race day fell on a Sunday at two p.m, the bikes were on the starting line, engines revving at thousands of RPM’s. Three, two, one! The green flag drops and they are off, my brother Dylan and I glued to the fence on the side of the track. About half way through the race I noticed something different, my nose had started to run, just an ever so slight drip. Almost like I was coming down with a cold or something. I went back to where we were camped out for the day and grabbed a Kleenex, thinking it was nothing, I went on enjoying my day at the races. But little did I know over the next three months I would be in the fight for my life at the ripe age of 16 years old.

Upon our return to Austin two days after the race, I was getting worse. I could barely breathe out of the right side of my nose, and the left was by far no better. I kept it to myself for some time, because I knew that Lacrosse season was coming up for my high school and the last thing I wanted was to be sick for the first practice. I had just come off of a very successful sophomore year, I was team captain of the JV, and leading scorer (35 goals and 20 assists), I had a varsity starting spot secured, I was ready and trained over the summer for my time to shine and lead my team.

Weeks had passed with no improvement, bottles of empty high-powered antibiotics littered my medicine cabinet. Something was not right, and I knew it. About a month prior to when I was diagnosed, we made a trip to see my dads ear, nose and throat doctor by the name of Dr. Chris Thompson. When he examined me he said that he had never seen anything like this before, “its weird” he exclaimed. Chris had noticed that my sinuses were totally blocked on both sides by what appeared to be some sort of a cyst on the sides of my septum (which we later discovered were granulomas). He suggested a blister pack of prednisone and a super high-powered antibiotic, he believed that we probably would not even have to call him back and that these drugs should knock it right out of me. Sadly, that was not the case. We were back to see him in two weeks, and I was much worse, I had developed a deep throaty cough along with horrible nosebleeds, and was loosing my appetite. During this visit, my ENT had done some research and came upon two diseases that could be causing my symptoms in my sinuses and the rest of my body either Sarcoidosis or Wegeners granulomatosis. Before we left his office that day, he had ordered a C-ANCA blood test and a chest x-ray stat.

Three days after that appointment I was laying in my bed, skinny, weak, too tired to move, I peered over at my clock and it was 3:00 in the morning. I could feel the blood running down the back of my throat. My mom came rushing in and said “we are going to the hospital now!” They admitted me that morning. Every thing I had ever known was going though my head laying in that hospital bed, my parents, brother, family, places I might never get to see, things I have never done, would I ever get to play the sport that I love again, everything. My greatest fear was to die at a young age and never experience life itself.

The C-ANCA test came back high, and I was scheduled for a nasal biopsy to confirm the suspicion of WG on my birthday, September 20th, 2006. I was 17 years old. The call came on a cloudy Friday afternoon from the lab of my ENT. Three months after I had reached for that fateful Kleenex that blistering hot summers day back in California I was diagnosed with a rare form of vasculitis known as Wegener’s granulomatosis. The next couple of months or so I would be battling this disease back and forth, discovering what life really is and what it means to me.

About a week after being discharged from the hospital I was at home and on the mend (lots of medication of course, prednisone and Cytoxan, etc.) My mom told me to call this guy by the name of Peter Capizzo, who also has WG. The next day I gave him a shout and am I glad I did. Peter is a great man with a heart of gold, he always made and still does make time for us to talk and have a great time playing video games and exchanging e-mails. He has helped me in so many ways, I am forever in debt to him. Peter has been there for me time and time again through the good and the bad. That’s by far the best thing that has come from the disease, meeting my good friend Peter Capizzo. I just hope that one day I can change a child’s life the way that he has changed mine, for that will make my life worth while. He has given me more hope and strength that has helped me through my life-changing ordeal than I ever thought possible. I would be lost and alone without Peter and I love him like a brother for that. He’s my brother from a different mother I guess you could say. I thank you very much Peter for you have changed my life more that you could imagine, it means so much.

I see things differently now that I have gone through such a trying time in my young years. It has been a liberating experience to say the least. Everyday I wake up and am thankful to see the sun rise on another day of my life. To be with my family and friends for another day, I live every day like it will be my last. Because you never know, it could be. Material possessions are nice, but the real gift of all is the gift of life itself, because without life what are material possessions? They are but nothing. When I was in the hospital I would constantly repeat these nine words “The grass is always greener on the other side”, and to tell you the God’s honest truth, it is. I believe this disease will change me for the better, and it has. For it has given me a new lease on life itself, my new normal…

A Year out of this World

A Year out of this World
by Nikki Basuk

Description: There are many voyages in life, until the final destination. Most people will not know the manner or time of their death. Welcomed, a life-threatening disease can become a powerful teacher.

Mrs. Basuk is a writer of fiction. At work on her novel "Wrath," she is stricken suddenly with a rare, aggressive, autoimmune disease. This book chronicles how she comes to embrace illness as a teacher of life.

A Year out of this World is available free of charge to anybody who wants to contact Nikki at:
nbasuk@shaw.ca

Looking Forward to the Future

By David Scheffer

2/7/08

 

My disease came as a total shock to me.  For the most part I loved life.  Everything was going great for me.  I was in a great college (University of Rochester), had a lot of great friends, and my future looked very bright.  All of a sudden a month into the spring semester I started to feel tired and sick.  It was an odd feeling.  I didn’t want to exercise because of how tired I was.  I figured it would pass after about a week as long as I slept and ate right.  I actually began to get worse until one morning I woke up with massive ear pain and a headache that wouldn’t go away.  Advil helped a little but this began to alert me that something more serious was afoot.  After the misdiagnosis of an ear infection and pneumonia for a month, I was finally admitted to the hospital so doctors could figure out the real problem.

 

The following days in the hospital came with little sleep, a rapid heart beat, an uncontrollable cough, feverish temperatures, and a fearful attitude.  Under the care of teams hematologists, nephrologists, ear, nose & throat, and pulmonary specialists a conclusion was met.  A c-ANCA blood test and nasal biopsy among other tests confirmed Wegener’s granulomatosis.  I went straight to the most trusted source of information for college students: Wikipedia.  They had an excellent summary article which basically described what the last month of my life was like medically.

 

The fact that the disease was incurable was alarming, but knowing that other people had already had this and that there were even special doctors to treat me was comforting.  I usually tell people that the first IV pulse of steroid treatment made me feel human again after going through a month of slow and painful death of various cells.  I was sent home on prednisone and Cytoxan pills along with many other drugs for blood pressure control and the like.

 

However, this was not the end for me.  Over the next week my creatinine rose to high levels indicating kidney failure.  I needed to go back to the hospital and be placed on dialysis.  Getting used to the tube sticking out of my shoulder was downright scary.  I didn’t mind the dialysis process because after all I was studying to become a chemical engineer.  In fact, chemical engineers were the original creators of the dialysis machine.  Luckily, I only needed to be on the dialysis for about 3 weeks until my kidney function returned to normal.  Also, during my second trip to the hospital I was given IV Rituximab because my case was considered very serious and this new treatment had proved effective in others.  Thanks to this and other care I received I was actually able to finish out the semester of college I was enrolled in with a half course load.

 

Once the semester came to a close and summer began, my hematocrit level (red blood cell count) was still low and falling.  When your hematocrit drops significantly, it is hard for the body to pump oxygen around so the entire body feels tired all the time.  The doctors said it was reasonable to be at 27% or so (percentage of red blood cells in a blood sample) but I thought that was absolutely ridiculous.  I was a very active 21 year old and having a red blood cell (RBC) count any less than 40% (a normal reading) was not acceptable to me.  With a long wait, I finally received erythropoietin which boosts RBC’s and felt my old self again by the end of summer.

 

This was still not the end for me as I began to have hip pain in my right leg at the beginning of October.  By the end of November of 2007, an MRI showed I had avascular necrosis in both hips.  This is a common complication of steroid use but it devastated me once again.  The painkiller Vicodin was prescribed and has helped the pain significantly but it still hurts often and I am unable to do some of the things I love like running or tennis.  Fosamax was prescribed for this complication to strengthen the bones so they have a lower chance of collapse.

 

I’m sure now that 2007 has been and will continue to be for a very long time, the worst year of my life.  I don’t say this to dwell on the terrible times I went through but instead to look forward to a much better future.  Possibly even better than the path I was on before the disease took hold.  I am left with great hope for the coming years as I finish up college and head out into the real world with a perspective few people will ever have.

Making a Difference

By Grace Eisen, VF Education and Awareness Council
January 2007

"Wegener's granulomatosis" (WG) the excited medical student exclaimed, you're lucky to see a couple cases in your career and this is my first week. As a registered nurse of nearly 30 years, I never heard of WG and now was the patient being spoken about. My family and coworkers searched the internet for information while I struggled to cope with the symptoms and being on the receiving end of healthcare. I never dreamed this event would lead to the role I will now play in making a difference in the lives of those with WG and vasculitis.

My vague symptoms of sneezing and runny nose of a couple of months duration progressed suddenly to bloody noses, skin rash, migratory arthritis, blood in my urine and a temperature of 102. These symptoms, along with having a sister in law with Lupus, quickly brought the concept of an autoimmune disease to my mind. I truly do consider myself one of the lucky ones. Bonnie, the physician assistant at Internal Medicine Associates listened to my concerns of autoimmune disease and Dr. Pasquale B. Iaderosa, my physician who had actually cared for a WG patient in his residency, recognized the symptoms. I was hospitalized in acute renal failure. Lab work and a kidney biopsy confirmed the diagnosis of WG. I was started on a course of high dose IV steroids, Cytoxan and plasmapharesis for additional pulmonary symptoms which had developed. My creatinine rose from 1.3 to 5.0 within the week before starting to respond to the treatment course. The creatinine levels returned to the normal range within six weeks. I still wonder what my fate would have been had Dr. Iaderosa not recognized the symptoms of WG and initiated the referrals for early diagnosis and treatment.

Approximately a month after my diagnosis a distant relative sent a copy of the WG Association newsletter with details about the July, 2004 Cleveland Clinic Symposium. I quickly signed up eager to learn as much about WG as I could. The weekend was filled with the research into the causes, pathology and treatment of WG. Most importantly I met many individuals with WG carrying on a normal lifestyle. Armed with the symposium resources I sought out the additional care of Dr. W. J. McCune, rheumatologist, at the University of Michigan for further evaluation and management of my disease process which has progressed without incident to this point in time.

At the time of my diagnosis I was nearing the completion of courses to advance my nursing degree and used every opportunity to learn more about WG. My community based graduation project involved meeting with the current support group leader in the Detroit area to identify some of the outstanding needs of the group. We worked to advance the group to a chapter with a mission to reach out and support the needs of those in our community whose lives have been touched with WG. A survey was developed to identify the needs and interest of the local members. Goals were set to offer health education and promote awareness of WG in addition to offering support. Meeting attendance increased as did the group involvement and enthusiasm. Nine of our group members attended the 2006 Symposium in Baltimore, Maryland.

I am truly honored to serve as the WG representative for the Vasculitis Foundation Education and Awareness Council. I believe this is a great opportunity for me to give back to the organization, to share my personal and professional knowledge and experience. I believe improved awareness of vasculitis in the health care community will support earlier diagnosis, better management and outcomes for others. Increasing our members understanding of their disease, treatment and prevention of complications will improve their quality of life. I look forward to making a difference in the lives of those dealing with WG and vasculitis.

Mystery Diagnosis - Wegener's Granulomatosis!

Nicole 

Hi. My name is Nicole Guerin and I recently had the privilege of sharing my journey with Wegener’s granulomatosis for the Discovery Health Channel’s show “Mystery Diagnosis”. I have always enjoyed watching shows about medical mysteries and felt so inspired by hearing people talk about their disease and how they overcame their illness. 

 

My mom and I would often watch medical shows together and I always told her I should contact them and see if they would be interested in hearing my story. Having watched all the shows, I knew I had not seen a segment featuring Wegener’s and thought what an excellent opportunity it would be to bring awareness to my disease and vasculitis in general.

 

In the fall of 2006 I sent an email to the Discovery channel. I told them what illness I had and asked if they would be interested in hearing my story. I soon received a reply stating they were not casting at the present time, but asked me to check their website for future opportunities. About 3 weeks later, someone from True Entertainment contacted me. They are the production company who does “Mystery Diagnosis” for the Discovery Health channel. I was asked some general information and then corresponded via phone calls and emails. I later submitted a time line of events that led up to my diagnosis of WG and what my life was like now. My topic was presented and I found out shortly thereafter that I had been cast! I was so excited and a little nervous all at the same time.

Before I knew it a date for taping the show here in Dallas had been set for the end of November in 2006. I worked with the best crew: Monica, Ann and Andy. We shot for 3 days. I had no idea how much work went into making the show. We taped interviews at a studio in Dallas, shot scenes at my home, work and doctors’ offices. We were even able to tape at Presbyterian Hospital in Plano. They were extremely generous and let us use an actual operating room for recreating the lung surgery I had there.

One thing I had not realized is how this experience would make me relive the process of being diagnosed. It was like hearing everything for the first time again. My pulmonologist, Dr. Blackmon, was an integral part of the show. I feel so blessed and fortunate that he was the doctor called in to treat me that evening I went to the ER when the mass in my lung was discovered. He has been so gracious and supportive of my family and me every step of the way. Having him in my corner has made my survival possible.

My hope and goal in doing this show was that I could make someone feel the same inspiration I felt when I heard others tell their story on Mystery Diagnosis. I know the day after the show premiered on April 16th, two women contacted Dr. Blackmon’s office saying they had seen the show and experienced many of the same symptoms and wanted to be seen. Friends and family who knew I was sick told me they had no idea of the severity of the illness. Everyone told me they thought the show was extremely informative and very well done.

It was truly an honor for me to tell my story and help bring awareness to Wegener’s granulomatosis and vasculitis. 

Pierre and Robby - A WG Story

By Lisa Moore

rmlm65@aol.com

Have you ever had one of those moments where you think to yourself "What am I doing?".  I had one of those on a cold December day in 2004 while driving to pick up a new puppy.  We had been married for 21 years and I don't like house dogs, so why was I going to pick up a house dog?  Little did I know how important that puppy would be to my husband in the months ahead.

Robby had been sick with a sinus infection since September.  He would go to the doctor, they'd give him antibiotics and he'd get a little better and then would become sicker once again.  Weird things were happening at the same time, such as he would get a tingling sensation from the top of his head down the middle of his forehead, he would drink a beer and his sinus's would become so inflamed he would sneeze and sneeze.  Then he got to the point where his joints ached and ached, one day it would be his shoulders, then elbows, it got to the point where he could hardly walk due to the fact that the bottom of his feet hurt so bad. 

During all of this we went to our family doctor several times and things weren't getting any better, we were told he just has a sinus infection and it has to run its course.  We didn't agree with that, so he went to see an ENT doctor by the name of Dr. Nathan Burroughs.  He checked Robby out, gave him really strong antibiotics and said come back if you aren't any better.  Several days later, we were back at his office.  He examined Robby again and this time he sent Robby for lab work and on the script it said ANCA, I remembered seeing that when I was doing research on the web trying to see if Robby had some sort of myalgia disease.

I know enough about medical care to be dangerous; I've worked in the field since 1992.  So I got back on the internet to research the ANCA test and what I found made me think that my world was coming to an end because the information I found said Wegener's granulomatosis patient's only live up to 7 years.  I kept my secret to myself during that long weekend because I was hoping against all hope that Dr. Burroughs was wrong, and I didn't want to upset Robby and our 2 daughters, Amanda 19 and away at college and Ashley
who was getting ready to turn 21 next month.

During this time frame Robby was home in bed so sick he could hardly walk and while he was laying there our new puppy, Pierre was right there with him.  Those two had basically become one.  Robby slept, Pierre slept, Robby got up to eat something, and so did Pierre.  When we first got Pierre, his little ears were straight up (Toy Fox Terrier), but the sicker Robby became, the more Pierre's little ear drooped, to the point it was bent all the way over. 

We received news from Dr. Burroughs that Robby's ANCA test came back positive and that he needed to come back in for a biopsy of the nose to see if they could get a diagnosis of WG from the tissue.  That was done and we were told to see a rheumatologist as soon as possible. We called the one he recommended, Dr. Cameron Jones, and were told it would be several months before Robby could see him, I told them we didn't have several months to wait.  It worked out that Robby was able to see him the next week.  We took the ANCA test and the biopsy results and met with Dr. Jones.  He immediately started Robby on Cytoxan and a high dose of prednisone and of course other medications to counter act those medication effects on the body. 

It seemed like almost immediately Robby was feeling better and the Saturday that Robby felt almost back to normal (what his new normal is after WG), Pierre's little ear was straight back up, that's how in tune that little dog was with Robby.  Within 6 months of starting treatment Robby was in remission and was transitioned from Cytoxan to Methotrexate.  Robby would
go for monthly visits in the beginning and I would go along with notebook in hand and all of our questions written down that had come up since the last visit with Dr. Jones.  He would answer all of our questions and took time each visit with us to do so, he never hurried us.  Once Robby was transitioned from Cytoxan to Methotrexate he went to see Dr. Nabih Abdou for a second opinion.  We learned about Dr. Abdou from the VF Newsletter.  Robby transferred his care from Dr. Jones to Dr. Abdou just for the fact he is an expert in WG.  Dr. Jones was a great doctor and by transferring his care to Dr. Abdou was in no reflection against the care that he received
from Dr. Jones.  Robby felt very lucky to be able to see an expert in his disease.  Dr. Abdou has told Robby he has "Limited WG" and we feel it was because of early detection of the WG.  Robby was taken off of all medications in the early fall of 2006!
 
During Robby's treatment, Pierre died of microscopic liver shunt disease (a form of vasculitis in dogs) in February of 2006.  I truly believe Pierre was brought into Robby's life to help him thru his treatment and illness and once Robby was better, Pierre was called to go help another person in need.  We miss that little guy like you wouldn't believe.  Robby said he, on those really rough days in the beginning, was so glad to have Pierre by his side. 

Robby's disease flared in May of 2007, the day I left for a trip to go overseas to see our daughter who was studying abroad at the time.  I was not even thru the security check point and he stepped out of the doors at the airport and had a nose bleed.  He had another nose bleed 2 days later that lasted for 30 minutes.  He called Dr. Abdou's office and went in for a visit and was started back on Methotrexate and prednisone.  The flare was brought on by the stress of my leaving.  Stress is one of the worst things for a WG
patient. 

Robby is due to come off all medications once again the first of March and I have promised not go on any trips that do not include him. He has learned his limitations, with gentle reminders from me time to time.  He has learned that keeping stress at bay is very important to his daily life.  We know Robby's prognosis is a lot better than what I initially read on the internet especially with the help of Dr. Burroughs’ knowledge of detecting WG and getting treatment started in the early stages of the disease. One of Robby's sayings is "It is what it is" and that is how he takes life one day at a time, he knows he can't control WG but he does not let WG control him.

 

There Must be a Reason

THE FIRST BOOK EVER ABOUT LIVING WITH

WEGENER’S GRANULOMATOSIS

There Must be a Reason

My Daughter’s Battle With

Wegener’s Granulomatosis

By Myrna Swart

 

 

“I suspect Wegener’s granulomatosis,” Dr. Haring said. 

“Mom, my nose hurts worse than it’s ever hurt before.  It feels like it’s broken.”

“Mom, I haven’t been able to go to class for three days and my car is gone.”

“Mom, I’ve been hot and cold, perspiring and shivering, I’m completely covered with a rash and I have one of the worst headaches I’ve ever had.”

“Mom, I’m urinating blood.”

“My knees hurt really bad, Mom.  I don’t know if I can get out of bed and … ”

“They’re sending me to Denver by ambulance.  I need a blood transfusion.”

“I think I have chicken pox.  Can that happen to someone who’s 30?”

“My eye is sticking out of my head and I’m seeing double.”

“Mom, my hand is swollen and there are red streaks going up my arm.” 

“There’s a lump in my groin.”

It seemed that, where Carol was concerned, from the time she was 16 there was one crisis after another.  At that tender age my only daughter began fighting a little known rare disease called Wegener’s granulomatosis.  It began around the time she wanted to change the shape of her nose.  The disease brought about that change in a way she couldn’t possibly have anticipated.  Before she was 30 she would know unbelievable pain and unimaginable fear.  She would experience many crisis situations and emerge with more will to survive, and thrive, than I would ever have believed.

But she would also find a way to reach out to others and bring them comfort and support.  She would actually save lives.  One day it would become clear that there was a reason that she had been chosen to endure this calamity as she finds the answer to the question:  “Why me?”

Her story began in 1978 during her junior year in high school.  Her battle with Wegener’s granulomatosis, and the aftermath of the chronic autoimmune disease, changed her life and indeed the lives of our entire family.

It is my wish that our experiences will lend support, comfort and hope to others facing a similar battle. 

Sales of this book will benefit the Vasculitis Foundation, to further its efforts toward awareness, education, and research, along with offering comfort, and support to those with chronic autoimmune conditions. 

To purchase this book, go online at:  www.iuniverse.com, www.amazon.com, www.barnesandnoble.com  or www.bordersstores.com  and bring up the title:  There Must Be A Reason.  The book can be ordered in either hardcover for $36.95 or paperback for $26.95.  If you would like an autographed copy you may contact Myrna directly.   

For more information contact Myrna Swart at 561-742-5883 or myrnaswart@bellsouth.net

WG and Fertility – A Personal Story

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 potentially 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.