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Karen - Survival and triumph

by Karen Fahey, Laval, Quebec

My name is Karen Fahey and I have an inherited disorder known as factor VII deficiency.

At the age of 14, life as I knew it changed forever. I began to menstruate… and that’s when my nightmare began as well.

The main cause of my nightmare was heavy and prolonged periods, also called menorrhagia. I want to tell my story and to share with you some of my experiences with menorrhagia and the impact it has had on my life.

At first, I wasn’t sure if what was happening to me was normal, because I always bled very heavily when I menstruated and often experienced embarrassing little incidents. Others thought I was making a mountain out of a molehill, that I just had to be more careful to prevent such accidents! For example, when I was 16, a classmate touched me gently on the shoulder as I was getting out of the school bus to let me know I had stained my white pants. I think “traumatized” is the right word to describe how I felt when I had to go to the infirmary with my bloody stain in plain view for all to see.

At age 18, as I was getting out of the car of the young man I was dating, I noticed a bloody stain on the beige vinyl seat... I cried with shame for a long time.

Over the years, the bleeding increased, and fatigue and anemia became a part of my life. I began to have difficulty at work and at home. Yet still people felt I was overreacting. Because of my insecurity, I would often work late to make up for the time I spent going back and forth between my office and the washroom. Not to mention my fatigue and my lack of energy. I was afraid of losing my job.

As I neared my 35th birthday, I just couldn’t take it any more. I was not happy with myself. I was always tired, nervous, difficult to approach. By that time, my husband and my two daughters were directly affected by my mood. I had consulted many different doctors over the years who prescribed iron, saying I was too young for a hysterectomy, that I should wait a little longer before making such a momentous decision.

I continued, as a result, to live as I had in the past. One day, my family doctor thought she had found a solution for me. She prescribed Depo-Provera, a hormone injection administered once every three months. I went faithfully to my appointments every three months for four years, and my life was transformed. My joy was short-lived, however. In 2004, a report was issued about the risks of this drug, and my doctor stopped prescribing it for me. Instead, she referred me for a consultation in hematology at Sainte-Justine Hospital, and I met Dr. Rochelle Winikoff.

Karen, on the left, with Dr. Winikoff.

Dr. Winikoff understood me immediately, and she sent me to a gynecologist, Dr. Diane Francoeur, who also completely understood what I was going through. Dr. Francoeur and Dr. Winikoff worked as a team, putting their heads together to find a solution for me. We talked about the possibility of a hysterectomy. Considering my bleeding disorder, surgery of this sort was risky. We opted instead for Mirena (an intrauterine device [IUD] that contains a low dose of Depo-Provera), to buy time for advances to be made in medicine and technology. A hysterectomy could be reconsidered in a couple of years.

Unfortunately, for some unknown reason, the IUD pierced my uterus. There was no longer any choice. I had to have a hysterectomy. Dr. Winikoff was directly involved, and once again her close collaboration with Dr. Francoeur was remarkable. Together they restored my confidence, assured me that they would take every precaution to ensure the success of the surgery. Still... I was very frightened.

The operation took place in May 2006. The bleeding was kept under control throughout the entire surgical procedure, and I returned home barely a week later. Not long after, I noticed drops of blood on my towel after a shower. Worried, I went to the hospital. Unfortunately, neither Dr. Winikoff nor Dr. Francoeur was present. I saw the doctor on duty, who had no knowledge of my case. He did the best he could and sent me home. Exhausted, I went to bed at 6 in the evening, only to awaken suddenly at 11 p.m. covered in blood. The entire family took off in a panic for the emergency room. Once again, neither Dr. Winikoff nor Dr. Francoeur was there. I tried to explain my situation but found myself surrounded by nurses and doctors who knew nothing of my case and could not give me optimal care. By the following morning, I had lost a great deal of blood and emergency surgery was required. I spent several days in intensive care and received 13 transfusions of blood products. A three-week hospital stay turned into three months. I worked very hard to get back on my feet. I confronted my fears, and little by little, my energy returned.

After all this pain, all these fears, anxieties and frustration, here I am at age 45 finally wearing white pants without any fear. The road to this place was marked by obstacles and disappointments, but I know that, with the support of a multidisciplinary team of medical experts and a network like that offered by the Canadian Hemophilia Society, solutions are possible.

I was ecstatic to learn of the creation of a national CHS program devoted exclusively to bleeding disorders in women. And I am delighted to be part of the coderouge advisory group that will champion the resources required to ensure no woman will ever have to go through what I did.

- November 2011