Hi, my name is Pam Ditner and I am currently on the Ontario waiting list for a heart transplant. I was diagnosed with Congestive Heart Failure in the spring of 1995, 18 years ago. It was originally thought that my illness was viral in nature, but ten years after I was sick my son was also diagnosed with CHF.
Through great care, advancement in medications, and probably some luck, I maintained my new version of good health for about 10 years. I didn’t make it back to paid work, but I was able to do many volunteer activities. Being able to Volunteer on my own schedule made it easier for me to properly pace myself.
After those ten stable years, I had 5 years of slow but steady decline, my heart failure slowly progressed, and my ability to do daily tasks decreased, I lost the ability to do even one flight of stairs and one of the greatest losses for me was not being able to walk my two dogs around the block. In 2010, my health took a critical turn, and it was determined that my only option was a life-saving heart transplant. With no heart available and a day or two to live I required the implant of a Left Ventricular Assist Device, more commonly known as a mechanical heart. Frankly, this device is keeping me alive while I wait for a new heart.
My first experience with the transplant waiting list is mostly surreal. My son received a heart transplant in 2006 after being on the list for just five days. He went from being diagnosed, to becoming critically ill in just a few months. Our family had not even wrapped our heads around the concept of how sick he was, let alone what having a heart transplant entailed, nor had we attended a single information session when he was fortunate enough to have received a new heart. Most of that time is still a blur.
My second experience has been quite different, I have been on the list for 3 years and 2 months. In the beginning I didn’t think too much about it because I figured it would take a while, the doctors had said that it would likely take 8-10 months so I guess I deferred that worry for later. Then, by the end of that summer, (after about 20 weeks on the list) I wasn’t sure I was ready at all, I felt like I had this new thing covered and just wanted a little normalcy for a while. Now I am just ready and waiting and trying to stay as positive as possible.
For the past 38 months some parts of my life have basically been on hold, I can’t make any major plans to be somewhere because I never know when the call will come, however, I do like dinner plans, they usually work out fine! I am not supposed to be more than two hours away from Toronto at any time so that rules out a friends cottage we have often gone to and it also means that I missed my niece’s wedding last year because it was in Sudbury. If I went to the wedding I would have had to change my status to ‘on hold’ while I was away. Traveling in general requires a lot of luggage, I have lots of equipment and back up equipment that needs to travel with me. My husband and I are not big travellers so we just haven’t gone anywhere except to Port Elgin once. I also need to avoid places where I could pick up an infection because if I am sick when I get the call I may not be able to receive my transplant so I don’t go to the grocery store when it’s busy and last year’s Christmas shopping took a bit of creativity with some purchases done online and sending my husband and daughter out to buy most of the rest. My husband wasn’t all that keen on shopping for Justin Bieber perfume and my daughter wasn’t overly pleased about buying motorcycle accessories but it all ended up well. Along with my life being on hold, some of my family members lives have also changed quite a bit, my husband and daughter can’t be away or unavailable at the same time, my mother, who loves to travel, hasn’t gone on a trip in over two years and my mother-in-law has become my chauffeur driving me to appointments, exercise, bi-weekly bloodwork appointments, we had always gotten along well but this has sure given us an opportunity to become much closer. Without each of these people willingly making their own sacrifices, this whole waiting process would be much more difficult!
There also is one additional perk I can think of, besides of course being alive to wait, I am not allowed to vacuum, because of the risk of a shock from static electricity. And I can really confuse medical people, because I don’t have a pulse and I don’t have a measureable blood pressure.
When the call comes I will have two hours to get to the hospital so my notice will amount to a couple of minutes and I need to be on the road. I always have a bag packed and ready. My husband works in Mississauga but I have a few friends available who could take me to his work if the call comes during the day.
I have had four ‘false alarms’ or ‘dry runs’ so far and in each one I seem to get closer and closer to success. The day of my third call I actually made it all the way to the OR (prep for a transplant takes at least 6 hours) but the surgery was called off just as it was supposed to start because the doctors felt that the donor heart was just not pumping well enough. I have learned a great deal of patience during this waiting time and also readjusted to my new limitations. Because of the LVAD, a device that is labeled ‘a bridge to transplant’ my situation is quite different from that of many people who are laying in a hospital waiting for an organ transplant or at home and getting sicker while they wait. Even though I may look relatively well, and I feel better than I have in years, the LVAD is a temporary fix, not a cure.
Most people, including myself, never really think about organ and tissue donation until it affects someone very close to them.
There are typically around 1500 people on the list in Ontario waiting for a life saving organ transplant and many many more waiting for a life enhancing tissue transplant. Some people wait as little as a few days but some also wait more than 10 years depending on the organ they require. There are a few reasons why the wait can be very long.
Historically organ donation has only occurred after brain death and only a small percentage of all hospital deaths result from a determination of neurological death (brain death). Some estimates are as small as 1.5-2%. Also, Canada and Ontario have one of the lowest consent rates in the world. (around 23% of Ontarians are currently registered vs 37% is most US states). It is also believed that there are an additional group of 10% or more that think they are registered but are not. When polled, 90% of Canadians support organ and tissue donation. Your consent to donate in Ontario is now linked to your health card instead of your driver’s license and the information is stored in a data base managed by the long term care division of health care in Ontario. You may also go online just to check your status if you are not sure you are registered.
For all those who have registered and spread the word, I thank you. For all those who have yet to register, I strongly urge you to consider it. There are thousands of people awaiting life-saving transplants and your could potentially be the gift of hope, life and joy for them and their family.
All the best,