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

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.

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

How my life is really unglamourous

Have you ever read or heard that Facebook is bad for your self-esteem?

I have.

Think about it. What do most people post about on Facebook? Probably their: TOTALLY AWESOME VACATIONS! THE AMAZINGLY DELICIOUS MEAL FROM LAST NIGHT! THE SUPER HARDCORE WORKOUT FROM THIS MORNING! etc, etc.

Right? Right?

I'll admit, I'm totally guilty of this too. I post vacation pictures, pictures of the cakes I decorated, me doing aerials, and what is probably the most annoying habit: I post pictures of my adorable daughter (she's really cute, it's hard not to inundate my Facebook feed with pictures of Ruth everyday).

Why do we do this? Ostensibly, it's to share, right? Share pictures with friends and family who aren't local. Share good and bad experiences with vacation locations/businesses/restaurants. Share our successes, and share our failures. Share our feelings, both positive and negative.

But maybe, just maybe, we also share to make ourselves feel better.

I'm not saying this is necessarily a bad thing. Facebook is a great communication tool. I'd never know about friends struggling with depressions/anxiety, physical illness, crappy jobs, job loss, etc. if they didn't post things on Facebook. And I want to know. The last thing I want to do is make an inappropriate joke or comment to someone (which isn't to say that I wouldn't do that due to my extreme Darcy-pants), but knowing will make it slightly less likely that it would happen.

Obviously I've used this blog and Facebook to describe some of my recent family stresses (they're still ongoing, by the way). I wanted to let people know that something crappy was happening in my life, and writing the posts that I did was the easiest way to do so. It also provided me some cathartic release. Perhaps the less formal avenue of a cyber community makes it easier for people to share difficult things?

So, the shares I'm really referring to here are the boastful posts. The vacations, the fancy food, the *cough, cough* aerials videos. Let me say again, I am NOT without guilt. I don't post my pictures to intentionally make others feel bad, and I'm sure others don't post their pictures to make me feel bad, but I do. I desperately want to have cool worldly travels, do amazing aerial tricks, and have the cutest baby. But I can't, and I don't, and trying to find positive things to say about your awesomesauceness is dragging me down.

This is why Facebook is terrible for the self-esteem. We post the awesomest pictures of our lives, which makes the rest of us in our turn to feel like our everyday sucks.

I'm not asking anyone to stop posting pictures exemplifying their badassitude in life, I'm mostly trying to remind myself that people tend to share only the smallest, best portions of their lives, and in between those moments they still have to do laundry, get groceries, and brush their teeth. And, unless you're Chuck Norris, you probably do those things in a pretty boring, everyday manner.

So, I'm planning an experiment. For the next week or so, I'm going to post ordinary pictures. Pictures that show what my current life on mat leave is like. I'll try to limit the posts to less than 5 a day, and none of Ruth being cute. Feel free to comment or not, feel free to post your own in response to mine. Feel free to ignore me completely.

It's your life. and this is mine.

Ciao,

Andrea

Anger and other possibly inappropriate emotions

Andrew tells me that in our current situation, it's normal to feel anger toward the person in your family who is sick and the cause of throwing your life off kilter.

I'm not sure I'm actually angry at my sick family member, but I certainly am ticked off at the world at large. Could the timing of this emergency have been worse?

Only slightly. It could have happened last November to coincide with Ruth's birth. That would have been a certifiably worse time to have to deal with a sick family member in a different country. Learning how to take care of a brand new baby who was a slow gainer and took over an hour to feed, while spending hours in a hospital waiting room would have been horrendous. As it is, this emergency has occurred just as we were moving back to Canada, are trying to find a house, and were to go on vacation.

Of course you can't pick the timing of emergencies. That's kind of what makes such an occurrence an emergency, right?

As I mentioned in my previous post, Andrew had to deal with the move more-or-less on his own. He managed. Most everything was taken care of successfully--except for our car. Since our car was purchased in the US, we have to import it into Canada, and to do that you have to file paperwork with US Customs 72 hours before you plan to cross the boarder. Apparently Andrew missed the deadline by a minute or two. Seriously, a minute or two.

We have to go back to the US with our car for 72 hours so we can import it. That's great. Just what we needed, to figure out when to make it back to the US to import our car with everything going on.

In some ways, this emergency has helped our house hunt, in that we're here and can look at more houses (so far we've seen 31). In other ways it only adds to the stress we're under. We saw a house we liked last Thursday night, but ultimately we felt we couldn't deal with trying to put in an offer. There was too much going on in our lives. The outlook for my family member didn't look good. How could we rationally contemplate the purchase of a house?

So we didn't. We let the house opportunity slide  by.

Then there's our vacation. We were supposed to be in England right now. We should have visited Lyme Park (aka Pemberly) on Saturday, and spent Sunday in Manchester. On Monday we were to travel to St. Bees in order to begin walking the Wainwright Coast-to-Coast trail today (Tuesday). That's what we were supposed to be doing. I've wanted to do the Coast-to-Coast for, oh, I don't know, 5 years? At first we didn't think we could do it this year either (because we now have Ruth to take care of), but then people kept telling us to go for it. The only thing Ruth cares about right now is whether or not Mommy and Daddy are around. And she loves being outside.

This is where most of my anger and despair is concentrated, the lost vacation. I'm trying not to mope about it, but it's hard. We haven't taken a vacation since I graduated from library school--5 years ago. Plus we lost most of the money we spent in planning the trip, and we don't know when we'll have time to take a holiday later in the summer or fall. Andrew starts work in mid-July and my mat leave ends in November before Christmas break. The need to travel back to the US in order to import our car feels like a booby prize.

And then I remind myself how I shouldn't be whining about my lost vacation when my family member is extremely sick.

Then I feel like I'm a bitch.

So that's where I am. I'm grumpy, annoyed, and overall stressed-out. I'm trying not to be, and I'll get over it, but it will take a while.

I'll try to find something more cheerful to post next time.

Cheers,

Andrea

Family Emergency

Without going into any details, a member of my family is very sick.

Andrew and I had to scramble to find tickets on the earliest flight out of Boston (that we thought we could reasonably make) last Monday (June 8th) morning and get back to Ontario. Have you ever had to find a flight last minute? It sucks. 'Compassion' tickets don't really seem to be a thing. When I explained we needed to fly due to an emergency there wasn't much response from the customer service agent, and there was definitely no adjustment in cost. It didn't help that we needed to transport our cat, too, as we had no idea when we'd be back to Somerville.

I'm, in fact, not going back to Somerville. We didn't want to drag our daughter and cat back and forth from Somerville to Ontario twice more in such a short period of time. Our move out of the US had been planned for this week anyway (June 15th and 16th), but now Andrew has to take care of everything on his own. We're relieved we'd always planned to hire professional movers to pack up our apartment. At least that means Andrew doesn't have to box things up on his own. It does mean, however, that he's had to run around like a mad man to finish up things we'd meant to do together.

So, now I'm in Ontario with Ruth, and Tabitha (our cat) waiting. Waiting for things. Waiting for illness to run it's course, waiting for Andrew to join me.

I don't know what to do. I'm no good at offering emotional support, as I have a strangely detached view of illness. I get emotional over a lot of things: Ruth's refusal to sleep, rejection letters, music, but death I do not. Andrew thinks it's because of my stint in nursing; that I've seen illness and old age in ways many people haven't, but that might be the nice way of saying that in instances such as this I'm a cold, hard...well, let's just say I'm cold and hard.

And I'm getting tired to talking to people and being around people that aren't my daughter and Andrew. I'm especially getting tired of making small talk with people who insist on oogling Ruth--which is happening a lot at the hospital. I get she's cute and all, and most people aren't trying to touch or interact with her, but I have to do a lot of: "She's 6.5 months," (people often ask how old he is as Ruth is usually dressed in green, blue, or white), and saying "Thank you," when people comment on her appearance or her big blue eyes.

Today I'm hermitting. Owing to a bad sleep night for Ruth (and therefore me), I'm staying in. I think I'm going to have to spend less time at the hospital in general, as it's not doing anything good for Ruth's sleep and stress levels, Hopefully today's rest will help me rejuvenate, and then Andrew will be back tomorrow.

So, that's all I feel like I'm at liberty to say right now. It helps to get a few of these thoughts off my chest. There are many more, but at this time they're not for sharing on the internet.

Ciao,

Andrea