Organ donation: Just do it

This will hopefully be the last time I blog about my mom's illness. In fact, I'm not going to write about her illness at all, rather, I want to take a couple of minutes to encourage everyone to be an organ and tissue donor.

In Ontario, you have to sign up to be an organ donor. The form comes with your driver's license, and you can either mail it back, or you can fill out an electronic version. You actually have to confirm your donor status online, so it might be better to just do the technologically advanced thing, and save a tree. Either way, it takes about 2 minutes to complete the form.

Just do it.

Here are a few points about organ donation, summarized from the Be A Donor website.

Why donate?

• According to the Be A Donor website, currently 1,500 Ontarians are waiting for an organ donation, and every 3 days, 1 of those patients dies due to a lack of a suitable organ. My Mom waited approximately 6 weeks for her liver.

The Donation Decision:

• Your decision to donate is confidential, and it will not affect the care you receive in the hospital should you become ill. The only thing we know about my Mom's donor is that they weren't local (the guess is Northern Ontario).
• Anyone over 16 years of age can donate, and you can withdraw your consent at any time.
• Although the Trillium Foundation always confers with your family before your organs are donated, your family can override your decision to donate, so make sure you talk to your family about your decision.
• Without a pre-signed consent form, only 50 percent of families agree to organ donation.

The Donation Process:

• Once a donor dies, their organs are tested for medical suitability, and to determine which patients are a best match for your organs.
• Organs that can be donated include: heart, liver, lungs, kidneys, pancreas, small bowel, stomach, corneas, heart valves, skin and bone.
• The whole process takes about 24 hours, and should not impact funeral arrangements. An open casket should still be possible.
• The family should not incur costs from the donation process.

So, that's it. I hope I'm done with this chapter of my life. As Andrew and I have discussed lately, it feels like we've lived through several lives since June, and we could do with a break.

Please consider agreeing to be an organ donor. You can save a life, possibly several.

Just do it.

Ciao,

Andrea

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 Foundation, CDC). 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.

Ciao,

Andrea

Family Emergency, Update

This is a short post to update you, gentle reader, on my family emergency.

It's on going.

That's it. I would like to write about a couple of the aspects of this situation (for educational purposes), but I feel like I need to wait until we've reached something more of a conclusion before I do that.

Here's what I'll say for now:

When we flew back to Ontario in June, the state of the emergency was probably at a 9.5 out of 10. We thought we were coming to say goodbye. For much of the following week we continued to think that was the most likely outcome.

At this point I'd probably dial the emergency rating back to about a 5 or 6 out of 10. My family member isn't well. They are slightly better, but there's still no immediate expectation of them being discharged from the hospital.

Finally, I want to encourage everyone to consider being an organ donor, and then make sure you discuss your decision with your family.

I hope everyone's have a great summer.

Ciao,

Andrea