Thursday, February 19, 2009

Michelle's Story

Michelle was receiving a lot of emails from friends who were not aware of her current situation. In response, here is her story in her own words:

13 years ago I was diagnosed with Wilson's disease after being sick for 2 years. Wilson's disease is a genetic disorder whereby the body cannot process excess copper. It sits in the unmoving organs of the body and essentially "rusts" them away. It attacks either the brain or the liver primarily. By the time I was diagnosed 3/4 of my liver was scar tissue.

Just prior to being diagnosed, I was told I had months to live.. After diagnosis I was put on a drug on Penicillimine, the only drug available in Canada at the time. It caused a severe reaction within 2 weeks. After researching the drug and side-effects my mama bear sprang into action. She arranged for me to go to Michigan where they were researching a new drug for the treatment of Wilson's disease. I was patient number 28 or something like that. Luckily, the treatment worked and my life was spared.

After spending 2 months in the hospital (and only one break-away attempt!) I returned to life in Vancouver BC with renewed gratitude and an even bigger appetite for life. The disease, reaction to the medication and the 2 months of intensive chelation treatment left me without a short term memory, extremely tired and a host of other unpleasant symptoms. But, I was told that these symptoms would improve within 2 years and I could lead a normal life, both in quality and length. With treatment, Wilson's disease is not a death sentence

With great zest for life, I returned to work (got 2 promotions), went to school (earned my diploma), eventually found my husband, bought a house, had my baby, and then.... December 2007 arrived and I went to the hospital with pain. After some testing I was told that, inexplicably, the damage to my liver had continued despite good control copper levels with medication. My liver was failing and would require transplant. I was sure there was a better plan, a way to buy more time. My son was a little baby and I wasn’t ready to face any of this yet.
Before conceiving my son, I had asked 4 specialists and several medical practitioners for their opinion on having a child. I had unanimous agreement and support. They assured me that my disease was in good control, my life expectancy normal and the chances of passing this disease to my child negligible. It was with this reassurance that I made the decision to bring a baby into this world. Now my WORST nightmare was suddenly happening.

In February 2008 I went to the Mayo clinic with my husband, my mother and my son. It was a million degrees below zero and you couldn't go outside or your face would literarily freeze right off your face. We spent 10 days walking the tunnels between the hotel and the clinic. We were looking for answers, alternatives, basically anything but what we were being told. They confirmed what we had already been told and we returned home.

We were referred to the transplant clinic here at home for assessment and were told that, despite there being very little tissue left in my liver and many end-stage liver symptoms, the liver still had not failed. This continues to be true. However, because of the amount of dead tissue, my liver is not processing the blood and it is "bouncing" back causing my spleen to be grossly enlarged and varices throughout my organs. In addition, the blood is not being filtered properly by the liver so toxic gases form in the blood that are sent up to my brain causing neurolgical havoc in my mind. Therefore, in November 2008 I was PLACED ON THE LIVER TRANSPLANT LIST!!!!! I am so lucky to have another chance at life. I am so grateful.

While I wait, my world has gotten gradually smaller and smaller as I lose abilities and gain new inabilities each day. I can't work, drive, care for my son alone, keep my thoughts in order long enough to problem solve, make decisions, cook a meal without almost burning the house down. I am told to be prepared to start hemorrhaging uncontrollably or go into a coma at any time. Throughout all of this, my husband has been by my side. He has been steadfast in his commitment to my health and life and to our lives together. I am so blessed to have found a man with such strength of heart. But he cannot continue to work while caring for me and our son and keeping the household going. Because of this my mom has spent the last 6 months away from her husband and all of her responsibilities at home to be with us and help care for our son and keep the household going. She has also had to continue working which has put a strain on her emotionally and physically. She is returning home now which makes me feel a sense of relief. I never want to lean to hard on the people I love.

In her place we have a nanny- a bright 24 year old Filipino woman who made an immediate connection to my son. It will never be the same as having my mom but I am happy to have found a good match for our family. We took my mom out for a good bye dinner tonight and brought the new nanny with us. She eats Sushi so... she fits right in!

I am so blessed to have so many bright and loving people in my life. I am so grateful to my son. I know that my body gave him life but he keeps me alive and awake and present and real every moment. He is a responsibility that transcends whatever physical weakness I may have. I am so grateful to him for his strength and his spirit. I pray that he be protected from unnecessary pain and that he continues to find the happiness that is always with him.

My next assessment with the transplant centre is February 23rd unless the pager goes off before then!!! I will keep you posted.

With love,


  1. Michelle --

    Stay strong! I have Wilson's and and am over in Victoria -- I also went through the University of Michigan protocol under Dr. Brewer and Dr. Askari -- did the Tm, and now zinc acetate --
    have you tried contacting them?
    are you currently in hospital in Vancouver?
    if you need a fellow Wd -er to talk to - I'm here -
    and there is also the fabulous Wilsons disease listserv - an intimate on-line -- is how you subscribe -- and join!

    Best of luck...

    I've been diagnosed for 2 years, and am returning to Michigan this weekend for my last check-up!

  2. Michelle,
    I hadn't realized your condition had changed so dramatically since I had left on leave. I will pray for you and, ironically, hope that one of the shootings in the streets of Vancouver could end up blessing you with a liver. I was very happy to hear when you were off to have a baby. I'm sure he is beautiful.

    God Bless...Amanda El Chantiry

  3. Hi Michelle,
    Your Grandfather told me of this site today. I am so thank ful to have some where to go to know how you are doing in more depth. You are often in my thoughts but I know you are a busy young Mom and have not wanted to impose on your time. Having this up date, please know that your Cap Church friends will be praying for you and looking to support you. Blessings to you and Jarvie and Nathan.
    Candis, Glen and Charlotte

  4. Hi Michelle:

    I tried earlier today to leave my message but for some reason it did not register. I'm responding to your grandfather Virgil's call to advise me of your blog, in response to my enquiries about how you were doing.

    Your dad would be so proud of your valiant fight to hang in there until a donor's transplant can be given to you. All of us at CapChurch Men's Group pray for you on a regular basis. Praying for your victory over this significant challenge also helps us to keep your dad's memory with us. We still miss him and talk about his stirring contribution to our Tuesday morning group.

    May God bless your courageous efforts to overcome this illness and may God also bless your amazing friend who has offered you the gift of life with a share of her precious liver.

    In Christ,
    Barry Soper & CapChurch Men's Group, North Vancouver