Thursday, October 15, 2015

Tainted blood

That's what my Mom received in 1977, a tainted blood transfusion. It saved her life at the time, and I wouldn't have been born otherwise, but it almost took her life 38 years later.

My Mom was a victim of the tainted blood scandal and contracted Hepatitis C. She only found out she carried the virus last spring (2014). I remember the phone call clearly. My parents had emailed to ask if we could talk sometime over the upcoming weekend (we were still living in Boston at the time). We had no idea what was coming, and after some awkward storytelling (where we thought a different C word was going to be relayed), we were informed of my Mom's condition. It was the same weekend we were planning to inform our families that I was pregnant.

The CBC has a full timeline of the tainted blood scandal. According to the timeline, Hepatitis C (not yet identified as type C) began appearing in 1971. In 1978, the American Red Cross informed the Canadian Red Cross that blood donations may be tainted, but testing for HIV didn't begin until 1985, and it took until 1990 for direct testing of donations for Hepatitis C. Yeah. The Krever Commission began in 1993 looking into Canada's blood system. The following year the Red Cross recommended that people who received blood transfusions be tested, but as far I know, the Red Cross didn't actually contact people directly and tell them to get tested. Finally, in the late 1990s, lawsuits were launched to obtain compensation for all people infected by tainted blood.

My Mom, Dad, my brothers and I are all eligible for compensation.

What you might be wondering now is, how could my Mom have lived for 37 years without knowing she had Hepatitis C? Well, Hepatitis is a 'silent' disease, meaning there aren't a lot of obvious symptoms until the illness is quite advance. Things like fatigue, lethargy, and loss of appetite are typical, but could be interpreted of signs for almost anything. However, once the disease is advanced, liver damage (cirrhosis), organ failure, and liver cancer can occur (Canadian Liver FoundationCDC). As we learned from my Mom's experience, the liver does a lot more than act as a filter. It creates important proteins that keep the fluid of the vascular system where it should be (and not leaking out into the lungs), and helps manufacture platelets (an important factor in clotting). So, when the liver is damaged, many other bodily functions start to break down.

After 38 years of living with Hepatitis C, my Mom's liver was severely damaged. Even before she went into the ICU in June, there had been talks of liver donation. After she went into the hospital it became evident that if a transplant didn't occur, it was unlikely that my Mom would survive.

As a dose of irony, even if my Mom had found out about her condition earlier, she wouldn't have been cured of Hepatitis C any sooner. Yes, her condition could have been managed, but not cured. It was only in 2014 that, Harvoni, the drug my Mom was eventually treated with, was approved by Health Canada. Her most recent blood tests show she is now free of Hepatitis C.

So that it. That's more-or-less the story of my Mom's illness without going into any private details. In my next post I'll talk about the importance of organ donation.



Wednesday, October 14, 2015

Barely controlled choas

That's what my life feels like, right now. Like I'm juggling, and just managing to catch the balls, or possibly occasionally dropping one and having to snag it on the bounce back. I'll throw this out there right now, into the vast space of the Internet, that if I've let someone down over the past couple of months, I'm sorry. Very sorry.

Let me explain.

First, the family emergency. In June my Mom was hospitalized. She spent something like 10 weeks (my Dad knows exactly) in the ICU. She received an organ transplant mid-August. Her life is no longer in immediate danger, but it still recuperating in hospital (she was bed-ridden for almost all of her time in the ICU, so rehab is going to take awhile). We hope she'll be transferred to a hospital more local to where my parents live soon.

I still hope to write a couple more details posts about this experience, not because I want to air my family drama, but because I want to provide some education about my Mom's health concerns. Mainly, her illness and its cause, and the importance of being an organ donor.

While my Mom was in hospital, Andrew and I continued to house hunt. After viewing 35+ houses, we settled on a semi-detached in the East Ward of Kitchener. It isn't perfect (is that even possible?), but the main and top floors have been recently, and nicely renovated (the house was built in 1850), and it's in the neighbourhood we wanted. We took possession on July 30th, and have been slowly putting the house together, made more difficult by trying to reacquaint ourselves with friends, and by the fact that we've essentially had 1-day weekends all summer since we lose a day to visit my Mom most weekends. We're also slowly tackling some larger house issues (the roof needs to be redone, the foundation needs to be looked at for a small seepage problem, etc).

If moving and sick family members weren't enough, we've also somehow found ourselves involved in the possible expansion of a small business, and a start-up. These are two different ventures, involving entirely different people and different ideas. I can't talk too much about either of these at the moment, other than to say I'm excited to be involved in both, but hope to blog about them in the future.

And have I mentioned lately that I have a 10.5 month older daughter who is constantly on the go? She crawls like a speed demon, and can cover the length of our main floor in the blink of an eye (especially if she's chasing after Tabitha). We don't think unassisted walking is far off at this point, which means I'm going to be running after Ruth pretty soon. How time flies.

I've been wondering for sometime if life will ever not feel this way--like we're juggling chaos. I hope that it's due to the events of this summer that we're feeling extra crushed, and eventually the stress will dial back a few degrees. We'll see, I suppose.