Alright I'll give this a shot:

To receive a transplant I had to register for expanded prescription coverage under the Trillium Drug Benefit, and a precursor of that is being deemed Disabled, and when I received that designation I qualified for c. $1,200/month provincial Disability Payment. So started off every month with that banked.

Everyone with advanced liver disease such as mine is almost entirely disabled. I could do one physical task a day before over exerting myself. I went for a 3 hour walk a month ago and then could not get out of bed for 3 days. Mentally most like myself have hyroencephaly that negated my ability to read, remember or even understand basic things. Most require constant attention so they do not do things like eat a raw chicken breast or lose track of medication. I got in my first ever car accident and wrote off a $50,000 car in a single vehicle accident. I missed appointments. One time I could not figure out how to make tea.

Many people see this disease as effecting those around the sick person as much if not more as it is often like looking after a stubborn new born. I have a friend who thought he was watching a Leafs game but he was really just looking at an ad in the tv guide. Lol What is the cost of that? In my case I did not really have any free support so had to pay for everything to get done. Grocery shopping, cleaning, cooking. I paid where most people cant and don’t have to. To some extent, RevCan will allow me to deduct medical expenses and I have no idea how much of my spending meets their definition, but it is something to decrease the pocket costs.

Lets ignore those third party costs and personal opportunity costs and professional fees foregone, and look only at cash flow. Over and above all usual overhead costs, my monthly expenses that would not have been incurred but for my illness:

1) Care Giving: I was the caregiver for my mother who had advanced Alzheimers, so I had to transfer into a faciity instead of with me. Also had to pay for a cleaning lady, lawn guy, etc.: c $2,900 + 600/mth

2) Drugs and Supplies: sleeping pills, neuropathy pills, like needles and test strips: $50/mth

3) Clothes: I had a skinny set and a fat set and everything needed elastic waists: $200/mth

4) Dietary – high protein, low sodium diet; so much fruit, shake powder: $300/mth

5) Transporatition; Mileage plus parking to hospitals: $200/wth

6) Accomodation; eg. AirB&B for 7 am appointments: $200/mth

7) Various Medical Gear; eg. Dr. Ho electrostimulus machine, girdle: $150/mth

Summary:

- including care home: $4,600/mth

- without care home: $1,700/mth

I’ll also add that potential donors and donors can get reimbursed up to $5,000 by the Province.

Did I miss anything?