National Organ & Tissue Donation Awareness Week

This coming week, April 17th to the 23rd, is "National Organ & Tissue Donation Awareness Week" in Ontario. As such, there are many events planned across the province. To find an event near you, click here.

The numbers are shocking - there are nearly 1,500 Ontarians waiting for a life-saving organ transplant. Every three days, one of those on the waiting list dies simply because there aren't enough registered organ and tissue donors.

But with your help, we can change this. During National Organ and Tissue Donation Awareness Week in April, our goal is to register 1,500 Ontarians who wish to become organ and tissue donors - all the way from Timmins in the north to Windsor in the south.

With this year's event, Life for 1500, we want to connect with your community in a personal way, introducing transplant recipients in a more intimate setting, reminiscent of a family room with an array of family photos displayed.

Life for 1500 shows that those on the wait list are more than just numbers - they're also someones family member or friend.

For those of you in Ontario, the consent form can be downloaded here!

For other Canadian provinces, click here

In Great Britain, click here

In the United States, click here

To Remember Me - I Will Live Forever

by Robert Noel Test, American Poet (1926-1994)

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.

• Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.
  
  
• Give my heart to a person whose own heart has caused nothing but endless days of pain.
  
  
• Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
  
  
• Give my kidneys to the one who depends on a machine to exist from week to week.
  
  
• Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk. Explore every corner of my brain.
  
  
• Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.
  
  
• Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
  
  
• If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man.
  
  
• Give my sins to the devil.
  
  
• Give my soul to God.
  
  

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.

(from www.organdonorawareness.org/)

Bloggers With CF

I am a bad blogger, but a great procrastinator! Actually, I wanted to post this entry earlier in the week, but had a few uncontrollable setbacks. Mostly a fried modem and a dental appointment from hell. My apologies for the lack of updates here.

My introduction to CF came in the form of a fiery red head named Eva Markvoort. Actually, at the time I think she was brunette, but that could just be my color blindness. In any case, I stumbled across her blog in 2008, read & followed her entries, and from time to time, she would post videos. Never had I witnessed such courage, such finesse and such dignity in the face of something as ugly as CF. Reading about someones illness was bad enough, but the helplessness I felt one night that came from watching the videos was horrible. She posted a video of herself during a coughing fit. I wept, it was frightening to watch and has, to this day, stuck in my mind.

A few years ago, I caught a cold, or at least what I thought was a cold. The suffering lasted a few days but the symptoms weren't like any cold I had ever had in the past. In fact, it was just coughing fits! Major coughing fits! This went on for about a week before I decided to seek medical help. Well....my cold turned out to be post nasal drip. If you've ever experienced it, it's brutal! I would have these violent coughing fits that would leave me gasping for air. During the night, I'd cough so much, and so heavy I would almost gag and throw up...desperate for air. I don't pretend to think that my bout with the post nasal drip is anything even remotely close to what someone with CF goes through, but I understand the fear of not being able to breath, and the pain caused by the retching.

Needless to say, many of the blogs I follow and read are of people with CF. Some have had lung transplants, while others are on the waiting list....some are managing OK, while others are struggling. What amazes me most is the very tight-knit community CF'ers have formed across the globe. These are regular people full of hopes and dreams that for the most part, blend in with the rest of us and try to lead as normal a life as they can. The funny thing is, I find those living with CF have a much deeper appreciation for each day they are given....regardless of how shitty they're feeling that day. I've listed a few links to some of the CF blogs I follow to the right of the page. I urge you to visit these blogs, read their hopes, dreams and struggles and maybe leave a comment or two, or an email cheering them on! Oh...and one final request, sign your donor card please!!

CF - A message From Eva

Updates on my kidney donation are coming...I promise. Just need to organize thoughts and events before I do. In the meantime, watch the following. When you're done, sign your donor card!

February 11/2011, was a special day. 1200 people gathered to listen to some great music, to view some beautiful films and to honour Eva. The 65redroses benefit concert for CF, was a great legacy project. It brought out the best in so many people. $37 000 was raised for CF research! Eva's friends, under the direction of Stuart Gillies, produced a beautiful short film 'A Wish Where the Wind Once Blew' that honoured all those who have died from CF. Eva's boyfriend Justin also edited a short video with a message of CF, that brought home the reason why we were all there. Here is his video.

A Message from Eva from Justin Cousineau on Vimeo.

Multiple Living Organ Donation - Kidneys In 3-D!!

Earlier in the year, I was able to have all my ultrasounds, MRI's and x-ray imaging scans put onto a DVD by the folks at Toronto General Hospital. (By folks, I mean 'Alba' from the imaging department!) The DVD isn't really playable, it's a data DVD, which contains a 'viewing' program on the DVD that allows the images and scans to be viewed. I'll be posting some of the scans and images over the next few days. Thank you science!!

The following video shows my kidneys in 3-D!!

Multiple Living Organ Donation - 1 Week Post Surgery

Yesterday, November 27 th, marked the one week anniversary of my kidney donation. Once I got up this morning, I decided not take any pain medication right away. First off, I felt I didn't need any, secondly, I decided I should venture out to have the staples removed. Now, the discharge nurse at Toronto General told me they could come out in 7 to 10 days and that this could be done at my doctors office, a walk in clinic or I could do it myself. They even gave me a little tool to do the job. Now, I would have taken them out myself, but I couldn't reach or see the staples so good on my own. Needless to say, I opted for the hospital here in town to take them out. Since I was medication free, I drove the 3 blocks to the emergency department and had the nurse take them out for me!! Not that bad a procedure really, but there was some pinching, some tugging and a general feeling of 'Holy shit!!~ That hurt!' 13 staples, took less than 20 minutes from registering at the front desk, to a quick once over by the doctor on call to the actual removal of the staples. As I write this, the surgery site is itchy...very itchy!



So, eight days post donation, my incision looks good! It's clean, no real redness or swelling and now that the staples are gone, that pulling sensation is gone. How do I feel?? My pain level is maybe a 5, my stomach is still numb, I still have bruising around my left wrist where the IV was and there is bruising above and below my scar. Yup, it hurts! Not so much that I'm prevented from doing anything, but it does hurt! Getting up from a reclined or sitting position is hard, it's hard to get into, and out of bed. ~sigh~ Every day is a little better. One thing for sure, it's good to be home!!!

( Got an email from Sherry, Administrative Assistant at the Living Donor Kidney Program, yesterday as well. It tells of a package being sent to me with all my post operative appointment requisitions. Vague? Yaa, I know)

You did what????

On Friday, November 19th 2010 at around 6:00am, I checked into Toronto General Hospital to donate a kidney, my left to be exact! Over the next few days, I'll be collecting my thoughts and organizing my memories and experiences so I may share them with all who visit these pages.

Obviously, I survived the procedure. My recipient, whom I don't know, nor have I ever met, is also doing fine. It's been a wild journey, lots of ups, lots of downs. As a multiple living organ donor, the medical tests I've endured have been many. Do I have regrets? Nope. I set out to donate a kidney and part of my liver...and I have! How am I doing right now? I'm sore....very sore, and I'm tired. Keep checking back as updates will be frequent.

Also, I have enabled the ''comments'' option. (comments will be moderated) Feel free to leave a comment if you like, or you may email me via the link on my 'About Me' page. I have many changes planned for this blog so check back for updates.

Channy

1 Year MRI & Blood Tests

As usual, the frequent updates I promised to post haven't been so frequent! In all honesty, I'm just not good at talking about myself nor do I have any real earth-shattering donor related news to share. That said, I do have events in the works that I will post here as details become more concrete.

My one year anniversary has come and gone and I am doing great! I went for some blood tests at my local Life-Lab, and had the MRI on September 19th at Toronto General. The MRI was scheduled for Sunday at 4:00 pm. Ok, so I couldn't eat anything or drink anything 5 hours before the MRI, needless to say I was thirsty as all hell and hungry by the time I got there. The worst was driving into the afternoon sun to get to TGH. All these things combined, festered a migraine...which I had no medicine for. More on that later though.

The odd thing about my MRI appointment is that the imaging department at TGH is closed on Sundays, so I had to proceed to a waiting room down the hall and sign a sheet there. It wasn't busy, there were only 3 people waiting in the room and only 1 of them had the 'I'm getting an MRI gown' on. When the tech came to fetch this person, she handed me some gowns and told me to go change. Now, if you've read any of my other posts, you know I'm a huge fan of the gowns. Best thing ever? There was one gown, and some wicked cool draw-string pants! I didn't even know they had matching pants to the gowns! Needless to say, I was in heaven! I may, or may not have stolen those pants by the way...I just wore them.

When the tech came for me, I put all my other clothes in a locker and headed for the scan. It was a two part scan, the first series of scans they would do would require me to hold my breath and not move while the machine took the pictures. The second part of the scan was a normal scan.. Once I was all strapped into the machine and the headphone were on me is when my migraine started throbbing. I was trapped though..I couldn't move and there was no way I was going to bail on the test now! Grin and bear it I thought...the test took forever and that sound shook me to the core. When the test was over, I changed back into street clothes and may have forgotten to leave the hospital pants there and headed home...my saving grace was I did have one Relpax in the car, but by the time I took it, I was already doomed. I actually ended up taking the Monday off work because of the migraine.

The sole purpose of the MRI was to obtain a baseline for the 1 year mark. The blood tests were pretty much the same ones I've had at every testing interval post surgery. Here's the breakdown!

CBC - The complete blood count test determines general health status and screens for, and monitors, a variety of disorders like anemia.

Glucose - Measures glucose in the blood to determine healthy ranges.

Creatine - This test measures kidney function so they look for abnormal creatine levels.

Sodium & Potassium - Blood sodium/potassium testing is used to detect electrolyte imbalances and in my case, to check for any disease or condition involving the liver or kidneys that may be caused by deficiency or excess of potassium/sodium.

Chloride - Never ordered by itself, this test is part of the above potassium/sodium test.

AST & ALT- Is a simple blood test to determine the presence of certain enzymes in the blood. If the liver is damaged or injured for any reason, AST and/or ALT enzymes will spill into the blood stream. AST is short for 'aspartate aminotransferase' and ALT is short for 'alainine aminotransferase'...both are enzymes within the liver.

ALP & Bilirubin - These are liver function tests that show how well a persons liver is working. These tests will detect high levels or low levels of liver enzymes that could prove the presence of disease.

Urea - Measures the amount of urea nitrogen, a waste product of protein metabolism, in the blood. Once again, for the detection of liver failure.

PT, PTT & INR - These are a group of tests to measure how quickly your blood clots. PT measures the ability to clot, PTT determins if there is a blood clotting disorder and INR is a kind of comparison test to make sure results from one lab is the same as another.

So there you have it! All these tests have come back with excellent results, I'm healed up and doing fantastic! Long term effects so far? I have the scar and some numbness around the scar but as far as function goes...I'm doing awesome! From here on in I only have to have tests done once a year. This isn't the end of my journey though...just the end of THIS journey. Check back as the second part of my journey continues.