'My body is a circuit board'

Steve
Steve Bartlett
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Karen Halleran was diagnosed with Wegener's granulomatosis in October. - Photo by Steve Bartlett/The Telegram

Life was good for Karen Halleran. Some might say she had it all: three kids, a beautiful home, a job she enjoyed and extras like golf and travel.

But last fall, the St. John's woman learned she had something else, something that was attacking her organs and could kill her.

"My body is a circuit board," the 33-year-old says. "You never know when it's going to short out. That's how I feel with this disease."

The condition is Wegener's granulomatosis. It causes blood vessels to become inflamed, making it hard for blood to circulate.

Halleran found out what the problem was after a battery of tests was conducted in October.

She previously had kidney, ear, sinus and lung issues, and had never considered herself super-healthy.

But in the months prior to the diagnosis, something different was going on.

She was cold, fatigued and generally disinterested in life.

In her office at BellAliant last summer, her shivering forced her to wear sweaters and cover herself in blankets.

After a day's work, she'd head straight to bed, leaving her husband to handle home life.

Then her feet began to swell.

Doctors ordered bloodwork. Gout was ruled out, and before the results of a lupus test came back, the discomfort got so bad she went to Emergency.

Tests determined something wasn't right with Halleran's blood. She was admitted and remembers the doctor's words.

"'Karen, my love, your markers are so out of whack, we can't explain what's going on.' He said, 'I could see it for a 70- or 80-year-old woman, but for someone who's 33,' he said, 'My love, you aren't going home tonight. I can't let you go.'"

Numerous tests followed, with specialists thinking lupus or tuberculosis.

Halleran was put in near isolation. Anybody who visited donned a gown, mask and gloves.

One diagnostic discovered lesions on her lungs. Cancer was considered a possibility.

But everything was coming back negative. Halleran says a team of doctors was referring to her as "The House Mystery."

She had dropped from 103 to 90 pounds, and was getting sicker by the day.

Finally, on Oct. 6 - her eighth day at the Health Sciences Centre - a test determined Wegener's.

The mystery had been solved and doctors finally knew what they were dealing with, but the condition was raging out of control.

Halleran was told it had attacked everything, and she was promptly started on a series of drug therapies.

Among them: intravenous prednisone and a chemotherapy drug for treating autoimmune disorders and cancer called cyclophosphamide.

The plan was to continue high doses of the drugs until the Wegener's waned.

Halleran didn't return home for 15 days.

But nine days after being discharged, she went into acute renal failure and required a temporary shunt in her neck.

To make matters worse, her body appeared to be rejecting the chemotherapy drug. Doctors determined she was days away from total kidney failure.

She would require dialysis three times a week to rid her blood of toxins.

Her kidneys will never recover, which means she'll need a transplant in order to get off dialysis.

As if all this wasn't challenging enough, Halleran's husband, Leonard, had just left a job to start his own business, Armour Lock and Safe.

He no longer had a health plan, meaning no coverage for the expensive drugs she required.

But through a clause for people off due to illness in her employer's health insurance, she was able to rejoin the plan without having to endure the normal waiting period.

"It's been a blessing to be working for Bell-Aliant. I couldn't have chosen a better company," she says.

Halleran has taken a leave of absence.

Before she can have a kidney transplant, a donor has to be identified and she needs to be in remission for a year.

Both are still a ways off, but after a tough five months, things are beginning to look up.

The therapies - thrice-weekly dialysis and a freezer bag full of medications - are working. While she's not clinically in remission, she's getting close.

As well, a number of family members will be tested March 26 to determine the best candidate to donate an organ.

One of them is her mother, Barb Grouchy.

It's been tough watching her oldest daughter fight Wegener's, she said.

Grouchy has spent day after day nursing her daughter, but the support she'd really like to offer is a kidney.

"We're hoping it's going to be me," Grouchy says.

The right candidate should be known in five weeks, but even if everything goes smoothly, it'll be eight to 12 months (possibly more) before a transplant will take place.

Halleran was understandably impatient at first, but is coming to grips with the delay, the side-effects of the drugs and her overall situation.

She's gained some weight because of the steroids, and finds it hard to look at old pictures of herself.

Her range of movement continues to be limited by the dialysis lines hooked up to her neck.

She can't get a shower. Her husband has to wash her hair, and she finds it frustrating when she can't do things for herself.

She has had to follow a strict diet and misses take-out food. She's not allowed anything with phosphorus, potassium or a lot of sodium.

"Which is mostly everything," she laughs.

Still, she's feeling a lot better and her spirits have improved.

"I still have really good days. I still have really bad days. Each day is different."

Halleran has a teenage son, 12-year-old daughter and four-year-old boy.

She says they are dealing with her illness as well as can be expected.

Because her immune system is down, she can't be around colds or flus. If they bring anything home from school, she has to stay away from them.

Her family, friends and co-workers have helped in her recovery.

Their support has been constant, and recently, they held a poker night fundraiser to help offset some medical expenses and help the family financially as Leonard's new business finds its legs.

Halleran took a gamble and attended the event.

"Anyone who knows me knows I'm strong-willed. I was only going to go for an hour, but I ended up staying for the whole thing, pretty much. I was there with my mask on, my gloves on. It was really emotional, seeing a lot of people that haven't seen me sick."

The experience has taught her a lot.

She looks more at the big picture and doesn't sweat the small stuff. Her 15-year-old recently complained about having to run and catch a bus. She told him she'd love to be able to do that.

Her predicament has also taught her a lot about others. She didn't expect some of the people who have stuck by her to be there.

After having such a full life before learning of the Wegener's, she said in the weeks and months after diagnosis, she felt like she was going nowhere.

However, now that the condition is slowly being brought under control, and with potential kidney donor testing happening soon, Halleran is finally seeing a light at the end of the tunnel.

"I've been through a lot, but the thing is - this disease - you've got to stay positive. If not, it'll get you."

Halleran has started a Facebook group called Wegener's Granulomatosis and Rare Diseases, http://on.fb.me/FOaCHd

sbartlett@thetelegram.com Twitter: @SteveBartlett_

 

Organizations: Wegener, House Mystery, Health Sciences Centre Bell-Aliant Leonard's

Geographic location: St. John's

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Recent comments

  • Andrew Tribble
    March 20, 2012 - 15:37

    I too had a 'good job' before deing diagnosed with 'uncatigorised' vasculitis; there were about seven strains, at first....Now down to about five! I am also on dialysis, have been for about three years now. Anyway if Ican help, in any way, let me know. Best wishes Andrew T.

    • Blue Ink
      March 21, 2012 - 09:35

      Hi Andrew, a you in Newfoundland? For such a rare condition, there does appear to be more than usual out here. Feel free to sign up to Karen's new Facebook group if you are local. Never know, there might be a get together some day if there is enough local interest.

  • McRocket
    March 17, 2012 - 20:34

    I am really sorry you are going through this. I hope the outcome is better then everyone thinks.

  • Aunt Geraldine
    March 17, 2012 - 19:12

    Hey Karen my love, there's not a day goes by when I do not think about you, Leonard and the children! Wish I was could be there with you. Who would ever have known that YOU would be MY inspiration (:>)! Keep the faith, we are all standing behind you and pushing you along when you grow weary. All my love and prayers!!! Aunt Geraldine xxxoooo..............................

  • Ruby
    March 17, 2012 - 15:23

    I just read your story, and my prayers are with you also.God bless you.

  • Blue Ink
    March 17, 2012 - 14:53

    Ivan, I gather that you too have Wegener's? Me too by the way. Here is another great link for people who might be interested. http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/wegeners.asp It scared the beejezus out of me when I first read it in the hospital bed. Especially the part about life expectancy.

  • Starr
    March 17, 2012 - 14:42

    Karen Google The Juice Lady (Cherie Calbom). She has experienced miracles through juicing of fresh veggies and fruit, and of course eating them. Can't hurt and it is detoxing and healing. God bless.

    • Peter jackson
      March 19, 2012 - 10:11

      To Starr: Your heart is in the right place. Just want to emphasize though (as Karen already knows) that many fresh fruits are high in potassium and not recommended for patients experiencing kidney failure. Kidney disease is a catch-22 when it comes to nutrition, because many of the fresh, healthy foods we'd normally recommend are taboo for someone unable to filter the electrolytes through their kidneys. There are many websites out there that can help with maintaining a healthy diet for kidney patients. I might add that when I received my kidney transplant four years ago, the first thing I did was eat an orange and drink a can of tomato juice. Pure bliss, and something for Karen to look forward to.

  • Ivan Tucker
    March 17, 2012 - 12:47

    Karen,i just read your story,that hasn't finished,& probably never will.Your determination & mind set,will be the be the most important part of your recovery. Having gone through my own ordeal,that started in 2000,when at the time i lived,just outside of St. John's,& had my own business.my issues caused me to lose my business. I'm not about to make this my story,because having read what you have as a disease,it just bought back memories of the ordeals that "YOU",& your family have to try & overcome,are the bigger than any mountain,that is put before you.I so admire your tremendous will to not let this defeat you. It is at this point, harder on your family to deal with your illness,as the well persons,try so hard to say & do the right things,without fully knowing your inner pain.Throughout my illness.which is under control today after nearly eight years of treatment,i still incur side effects.I deal with these side effects,knowing i beat the illness,that could have taken my life.I always knew,no matter how bad my situation,there was always someone,worse off than myself. My prayers for you,are to beat this disease,& assume,as normal a life as you can.God Bless you (KAREN) along with your wonderful family & friends.I can also say with certainty,that there are hundreds.of people you will never know or meet,that are also saying there prayers for your recovery.Stories like yours,with self determination,believe it or not,also reaches out to people like myself,& gives me the strength to never give up,but hopefully give strength to others. Once more,take care & God Bless. PS-----my one wish,is someday,somehow,know that you are off dialysis.& you are up & about,& enjoying the life you so deserve.Ivan

  • RCollier
    March 17, 2012 - 10:15

    The NL Arthritis Society also provides support for this type of illness, which is actually a form of arthritis. They can offer information and support through their various types of programs and services,. You can also read more about the illness on their website at http://www.arthritis.ca/types%20of%20arthritis/Wegeners/default.asp?s=1 Good luck Karen, you seem to have gained control which is the first step of managing the disease and hopefully you will continue to become stronger and beat it!