Hi All.
Thought I would provide a brief update and I apologize in advance if I do not fully flesh everything out at this point as I am still trying to process what has happened in this last week.
As background, my liver died, I have O- blood and I needed a liver transplant. I was told that I would likely not get a timely "traditional" Western cadaveric donor so I began a search 14 months ago for a living match. I was sick enough to be on the wait list but not sick enough to jump the queue. I was expected to plateau where I was and pass through that very narrow window of operability very quickly; too quickly to get a deceased donor.
However, I just happened to go in for an unscheduled blood test for my heptologist and she saw that I was in the window where I was currently healthy enough to survive the operation but would likely die within 24-48 hours without it. Without telling me, she contacted the transplant team and they moved me up the priority list and located an appropriate deceased donor.
So at 10 a.m. last Friday the team called me and said I needed to be in "first call prep" by later that afternoon. As I was enrolled in a clinical trial using Hep C donors, I assumed that a nice juicy Hep C liver was waiting for me. But when I awoke the next day it was with a fully healthy, non-Hep-C liver. The one benefit of a cadaveric donor is that they use 100% of the organ, not 50% or whatever so the organ is all good. And 2 hours of scans today seems to confirm that my bile duct, hepatic artery, all the important stuff looks good.
They have warned that if I continue to be my normal jerk off self around here they may send me home on Saturday. I feel good.
I am so happy. And sad for my donor and their family. Personally overjoyed. But wish that those who were on the list longer than me could have gone first. I did not expect this part.
How has covid effected this process? I and the donor cleared in a 2 hour test time or something like that. Transplants kept going as fast as they could but there was an increased morbidity for wait listers like me as people were not out getting in motorcycle accidents but having strokes and things at home instead so the organs were unavailable. Plus, just like in prison, grub exchanges are big entertainment but we cant do that right now. Everything I touch is brand new and incinerated once I am done with it.
You are looking good Hubpeeps. Ill be back after a brief napping interlude! Thank you to all of you and especially those who have PMed me,
It is all VERY appreciated.
I suppose it's like being re-born. Oh literally brand new! Being told unexpectedly you're dying in the next day or two must be a hell of an emotional and mental roller coaster. I just can't imagine it. Here's hoping for a swift recovery - a bit surprised you aren't in for several weeks after surgery like that. Everything I touch is brand new
...and incinerated once I am done with it.
Just talked with the doc who put the organ in and he cancelled the biopsy and MRI I was scheduled for today. It is always acceptable to not cut me any more. :) He seemed supremely confident that I was going to have a great outcome so I am obviously very happy about that.
Good to hear this amazing story. Some guy, how much are you out of pocket for the new liver?
Update: My pharmacy delivery just arrived. $1400 for 42 days. Plus what I have already = currently about $2000/mth for pills. Covered by Trillium Drug plan.
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?
Thanks lil! Great question. I will get a detailed answer for you soon but for now I will estimate $1,500 a month x 14 months.
I just learned that the OHIP bill for a Donor (living) is about $12K.
Doing my best. Its hard for me to be moderate and the docs have to keep telling me to get back in bed. lol I've got too much stuff to do!