Organ Donation

There is a severe organ shortage in this country. Despite continuing efforts at public education, misconceptions and inaccuracies about donation persist. It's a tragedy if even one person decides against donation because they don't know the truth. Following is a list of the most common myths along with the actual facts:


Myth: If emergency room doctors know you're an organ donor, they won't work as hard to save you.


Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ donation can only be considered after brain death has been declared by a physician. Many states have adopted legislation allowing individuals to legally designate their wish to be a donor should brain death occur, although in many states Organ Procurement Organizations also require consent from the donor's family.


Myth: When you're waiting for a transplant, your financial or celebrity status is as important as your medical status.

Fact: When you are on the transplant waiting list for a donor organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information.


Myth: Having "organ donor" noted on your driver's license or carrying a donor card is all you have to do to become a donor.


Fact: While a signed donor card and a driver's license with an "organ donor" designation are legal documents, organ and tissue donation is usually discussed with family members prior to the donation. To ensure that your family understands your wishes, it is important that you tell your family about your decision to donate LIFE.

Myth: Only hearts, livers, and kidneys can be transplanted.


Fact: Needed organs include the heart, kidneys, pancreas, lungs, liver, and intestines. Tissue that can be donated include the eyes, skin, bone, heart valves and tendons.


Myth: Your history of medical illness means your organs or tissues are unfit for donation.


Fact: At the time of death, the appropriate medical professionals will review your medical and social histories to determine whether or not you can be a donor. With recent advances in transplantation, many more people than ever before can be donors. It's best to tell your family your wishes and sign up to be an organ and tissue donor on your driver's license or an official donor document.


Myth: You are too old to be a donor.


Fact: People of all ages and medical histories should consider themselves potential donors. Your medical condition at the time of death will determine what organs and tissue can be donated.


Myth: If you agree to donate your organs, your family will be charged for the costs.

Fact: There is no cost to the donor's family or estate for organ and tissue donation. Funeral costs remain the responsibility of the family.


Myth: Organ donation disfigures the body and changes the way it looks in a casket.


Fact: Donated organs are removed surgically, in a routine operation similar to gallbladder or appendix removal. Donation does not change the appearance of the body for the funeral service.


Myth: Your religion prohibits organ donation.


Fact: All major organized religions approve of organ and tissue donation and consider it an act of charity.


Myth: There is real danger of being heavily drugged, then waking to find you have had one kidney (or both) removed for a black market transplant.


Fact: This tale has been widely circulated over the Internet. There is absolutely no evidence of such activity ever occurring in the U.S. While the tale may sound credible, it has no basis in the reality of organ transplantation. Many people who hear the myth probably dismiss it, but it is possible that some believe it and decide against organ donation out of needless fear

Workup Week - Day 4

We had no tests on Thursday, May 17 so we came home Wednesday night and headed back up to Edmonton Thursday night around 5pm.

Today my first test was at 8:00am at College Plaza, Medical Imaging Consultants, which is about 2 blocks from the hospital. So we paid $5.00 an hour for parking and heading off for my abdominal ultrasound and Echocardiogram. The ultrasound was first at 8am and was completely finished by 9am. Then they sent me back to the change rooms to wait for the echocardiogram. The change rooms were all full, so I had to stand in the hallway with my oxygen on and wait for the next test. Not a very efficient system at all, but oh well. I`d never had an echocardiogram before, but it was next. I had no idea they took as long as they do. It was over an hour for the echo, but we finished these tests with no problem and then went for a much needed breakfast! This fasting business is not very much fun at all! 11:00am came and mom and I moved on to our last appointment with the transplant dietitian, Grace. She assessed my eating habits and took my height and weight. She was quite impressed with my eating and weight. She said that I had a good BMI for transplant and she was not worried about my nutrition at all. My A1C was also close to normal so that was good from the diabetes stand point. This appointment was about 45 minutes and then we were finished workup week!

It was a long, exhausting week but I am one step closer to getting new lungs. Now the entire transplant team is going to get together and review my test results and make a decision on whether or not I am a good candidate for transplant at their center. They all seemed very positive so I don`t expect there will be a problem being accepted. In a couple of weeks I will get word of their decision and then keep moving forward. If I am accepted I will then have to go up to Edmonton for a 6 week rehabilitation program. This program includes tons of physio and teaching. If all goes well I am hoping to attend the June 18 - July 27, 2012 session so I can get it done and move on. Oh also the doctors talked about when I would be placed on the waiting list. Sounds like they want to put me on right away as a status 2. Status 0 means that you need a transplant eventually and are accepted, but not currently active on the list. Status 1 means that you need lungs and you are on the list but are managing fine at home. Status 2 means that you need lungs and have frequent hospitalizations. I have been in the hospital quite a bit in the last 2 years and just got out of the foothills the week before I was due in Edmonton for the workup. I am also home on iv`s right now and have been on them for a month now. 2 iv`s totally 4 hours a day. I am feeling better and able to be off my oxygen a bit more now so I think they are helping. I go back and see Dr. Parkins next Wednesday in Calgary and we will decide if I keep doing the home IV therapy or stop it and take a break.

Workup Week - Day 3

Its day three today, almost half done!

Today was another early morning and not being able to eat breakfast again. At 7:30am we were at Diagnostic Imaging for a CT scan, VQ scan, and many x-rays. Lots of confusion today as I was supposed to have the CT scan first because it was booked, but they took me for the chest x-rays first. After the chest x-rays they took me for the VQ scan. I had no idea what this was until I got there. It is a scan that takes about 45 minutes and it looks at the gas exchange in your lungs and also the air movement. First they get you to inhale some special gas that they watch in your lungs by taking several pictures. After that they injected a dye into my picc line and took more pictures. After the VQ scan they took me to CT scan, but since they messed up my appointment that was scheduled for earlier I was waiting an awfully long time. Finally, someone took me down to use the emergency departments CT scanner as I was going to miss my next appointment. 3 hours later and all of the scans are finally completed. At 10:30am we were back in the Mazankowski Heart Institute to meet with Dr. Mullen who is a cardiovascular surgeon. I am still a little worried about the surgery because of the bacteria that I have but Dr.Mullen said that he has transplanted a number of patients with rare, weird bacterias and most have done very well with little complications so that made me feel better. After we talked about that he discussed in length with us about the possibility of living donors. I am interested in living donors and will look into this soon as an option in case my health deteriorates quicker than they can find a donor.

This was all of the tests scheduled for today so at about noon we packed up and came home for the night, as I also have no appointments or tests until Friday morning. We are planning on coming back up to Edmonton Thursday night and stay in the hotel again to avoid having to get up so early and fight with traffic getting into the city.

Workup Week - Day 2

Well on to day two.

Today I was only able to have a light breakfast because I was scheduled for a bronchoscopy. Oh well, I was already nauseated when I woke up anyways. The tests began at 8:00am when we had to be back at the lab to return my lovely 24 hour urine specimen. At 8:30am we had to be at the Rehabilitation Department for a 6 minute walk test. They gave me a timer and told me to walk around this square and see how many laps I could do in 6 minutes. I managed to complete 4 3/4 laps before the time was up. My heart rate went up to 130, but my oxygen only dropped to 92% from 96%. That was another fairly quick appointment. Next, at 9:30am we had to go back to the Mazankowski Heart Institute to register to meet with the Heart Transplant Cardiologist. I am not having a heart transplant obviously, but I still had to meet with him just to have a consult and make sure my heart is strong enough for the transplant. Of course it is! At 10:30am we were back at the 2E Medicine Clinics to meet with Dr. Humar, an infectious disease doctor. He talked with us about the rare bacteria I have and how we will have to attack it before and after transplant to make sure it does not return to my transplanted lungs. IV antibiotics pre and post transplant is definitely something I will be doing to make sure I stay healthy. At 11:00am I had an appointment for Pulmonary Function Tests (PFTs) and for Arterial Blood Gases (ICK!). I was not used to the PFT machine and mouth piece at this hospital and was also not feeling the greatest because I was so hungry and nauseated from fasting so my FEV1 was only 35% today. Hopefully it will be better than that when I see Dr. Parkins in Calgary next week. I had the full run through of PFTs. After that was the dreaded blood gases. That large needle they stick in the artery in your wrist does not feel good at all, but I got through it and my oxygen and carbon dioxide levels were not too bad at all. After we were done there, I got the pleasure of watching mom and Mike have lunch. Woo! Thank guys! At 1:30pm I registered at Day Ward 1A2 for my bronchoscopy. The nurse took me back and got me all ready to go and then they took me into the procedure room to put the scope down my throat and look at my lungs. They drugged me up with some Fentanyl and Versed which completely knocked me out. I don`t remember anything else until I woke up and mom was standing there looking at me. The bronc went good though and the doctor was surprised at how little secretions were in my lungs. After the bronc I was unable to eat for 4 hours because my throat was frozen so it was just back to the hotel for a nap before supper. After I woke up we decided to just go to the hotel lounge for supper and it was really good. After that it was back to the room to turn in for the night. Mom, Mike, and Auntie Lynn were with me all day again today.

Workup Week - Day 1

We came up to Edmonton on Sunday, May 13, 2012 and checked into our hotel that we will be staying at for 3 nights while we are completing all of the tests at the University of Alberta Hospital. 

Today was the first day of the 5 day workup that I have to complete to be assessed for lung transplant. And it was a busy one!! Mom, Mike, Auntie Lynn, and my Dad were with me. Started off at 7:30am where we had to be at the Mazankowski Heart Institute to have all my blood work and start a 24 hour urine specimen. Let me tell you, I don't think they have ever taken that much blood out of someone just for blood work! After a hectic morning of mom trying to get the equipment to take the blood from my picc line because my veins are so bad, the picc line wouldn't draw blood! So I guess I had to let them poke me! I must have had a professional though....one guy, one big needle, one vein, and the 16 tubes of blood were drawn. The best part of the day....Mom and Mike have to carry my urine around in a brown paper bag all day....even when we stop by West Edmonton Mall after the day is over...HAHA!! After all of the blood was done we headed off to my ECG appointment at 8:15am. I was glad that this only took about 5 minutes. Lots of wires, but all looked good. By 9:00am we were across the hospital in the 2E Medicine Clinics to meet with Dr. Nador who is a Transplant Pulmonary Specialist. He talked with us about the risk of the transplant in my case because of the rare Mycobacterium abscessus that I have in my lungs. He was very positive though and answered many of our questions. At 10:00am we met with Mina Deol who is a social worker. She went over many things with us including the financial costs of having a transplant, health benefits, AISH, and options for where we can stay when I have to return to Edmonton for the 6 week rehab program this summer. This appointment was about an hour and a half. After meeting with Mina, we got about an hour lunch break. At 1:00pm we returned to the transplant office and met with an anesthesiologist. He talked about that part of the surgery and how they would put me to sleep and the different iv's I would be connected to when I woke up. He also answered many of our questions. After meeting with him, we met with Marianne Schafenacker, who is the Assessment Transplant Coordinator. She went through a powerpoint with us about transplant and what to expect from the very beginning (the workup) to the recovery. It was great information that I also have enclosed in a duotang at home. She also took measurements of my chest so they will know how big of lungs they will need to fill my chest cavity when it comes to finding a donor. We finished the day off at about 3:30pm and had the rest of the night to ourselves.

After that long day at the hospital Mike, Mom, Auntie Lynn, and I decided to go over to West Edmonton Mall for some drinks, food, and of course the candy store! We stopped in at Hooters and had some wings and drinks (non-alcoholic for me :( ). After that we went to the candy store, checked out a few other stores and decided to go to a casino closer to our hotel. We stopped at Casino Edmonton and tried our luck at blackjack, but didn't have any! Mom thought she was playing a penny machine and put $20.00 in and played 9 lines at 2 cents each for 18 cents a spin. To her dismay it was a loonie machine, so she got one play...haha! Anyways after all that we had a quick bite to eat in the casino restaurant and headed back to the hotel to rest for the night before a day full of tests tomorrow.