Let's Get Rob a Liver!

My fiance, Rob Martin, was born with hemifacial microsomia. This means that in-utero, his head and shoulder were compressed together and there wasn’t sufficient blood-flow to properly grow the skull and face on his left side. This led to a series of surgeries from birth until age 9 to save function on the left including his hearing (fail), vision (win), and cognitive ability (I’ll answer differently depending on the day).

During one of the earlier surgeries, he had the bad luck of the ‘80s to receive blood tainted with Hepatitis C. While not as commonly understood as HIV, this disease affected tens of thousands of Canadians through tainted blood, while HIV was only in the hundreds. Hep C is often referred to as the “silent killer,” not showing any symptoms until it’s too late. Those symptoms you do feel will include malaise or fatigue, so you may choose to treat yourself for depression before you realize you’re wrong.

Unlike Hep A or B, C can be a life-long affliction. Rob has chronic Hep C, for which there is still no definitive cure. The virus sits in your liver and eats it until you develop cirrhosis, which will lead to life-threatening symptoms such as ascites, bleeding varices, hepatic encephalopathy, lowered immune system, etc., until liver failure finally kills you.

Rob did nothing wrong to get Hep C and then eventually cirrhosis. It is only transferable by blood, and it was a stupid accident of fate and bad screening that got him sick when he still didn’t know how to talk. To avoid your own infection of Hep C, go to verifiably clean tattoo parlours, don’t share needles, don’t share toiletries such as razors and toothbrushes, and don’t make both you and your partner(s) bleed during intimate acts.

A near-cure for Hep C came out recently and it had a 95% cure rate. It would have cost us $192,000 for the 6-month treatment that Rob needed and we spent a year jumping through hoops and cutting red tape before the drug company would offer it to him for free.

As luck would have it? Rob was in the 5% failure group.

While waiting to get onto another set of drugs with a 75% success rate and a 5% chance of nuking his liver into oblivion, Rob had to go to the liver transplant board before he was allowed to even take the drug.

He does not currently fit their criteria. Which is a nice way of saying they turned him away. His BMI is too high by 4 points, which we will fix. He needs a complete reworking done on his mouth and dental health (fun fact: after heart surgery, people need to go to the dentist four times a year because bad teeth can poison your heart), which is complicated because of $$$ and the fact that his left jaw is very thin and fragile.

They also don’t want to take him on because he has no fiscal support net to fall on after a liver transplant and an estimated six months off work. So apparently you need $$$ not to die of liver failure here in Calgary, Alberta, Canada.

My parents would gladly take us in. His friends would gladly take our pets (who, yes, would miss our dearly). If we wanted to move provinces, his parents would gladly take us in.

But because moral and physical support is not as important as fiscal support, what I am asking for in this fund is the amount Rob would make in six months on his current wage at 40 hours a week. I will make Rob lose the weight, we will work with friends and family for the dental coverage. So if we raise this money and the transplant board still says no? Cynically yet logically, I can use the money for his funeral.

Anything received above the requested amount will be split 50% to us, 25% to CATIE (Canada’s source for HIV and Hepatitis C Information) and 25% to The Canadian Liver Foundation.

Anything you could offer would be amazing. Do you have an old pre-paid credit card that was gifted to you and still has 20 cents left? We’ll take it. Just promise to share this and spread the word so we can gather all those 20 cents from your friends and your friends’ friends.

Please. Help me try to save the life of the man I’m supposed to marry.
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Organizer

Lori Hager 
Organizer
Calgary, AB
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