insights

When Karen and I first came to Gabriola in 99 I did so expecting to die soon. All of my doctor’s were agreed that my damaged lungs would continue to degenerate quickly and I had at best 6-12 months. Given the prognosis we decided it would be best to move here where her parents lived so that she would have a support system for when I continued the great adventure.. Obviously I didn’t die on schedule: partially because Karen and I are stubborn, partially because of the unpolluted air out here and mostly because the medical people were operating under a paradigm that didn’t fit me. They were used to people whose COPD – chronic obstructive pulmonary disease was caused primarily by long term damage from environmental factors and the rate at which those afflicted people died. My case was somewhat unique in that if happened fairly quickly, was compounded by an inherited lack of a chemical called alpha 1 antrypsin, and that once my exposure to the contaminated air ceased then my lungs actually recovered somewhat. Thus the deterioration was much slower than they expected.
The BC transplant team members were the first to understand that as the cause of my COPD was different so to would be the progress. They suggested that if I was still having fun with life I could put the transplant off for a year to18 months, a time slot extended twice. Putting it off made sense because as they said “we get better with every operation” and also because at the time the primary drug used to depress the immune system was prednisone, which in me caused severe emotional shifts and consequently altered my behavior in a manner I was unhappy with. Now I have reached a point I can no longer put the transplant off.
The concept of being on the top of the list is somewhat of a misnomer in that there are presently 9 of us waiting for a lung. Who gets the next lung is based on matching blood types, size of lung versus chest cavity, whether it is a right or left lung (I need a left considerably more than a right), and who is in the gravest need at the time. So for any of the nine of us the next lung could be ours depending on these four factors. The likelihood is that most of us will get a lung this year but as you are in effect waiting for someone else to die and die in a manner that leaves at least one healthy lung there is no way to predict when your chance will come up again. So the wait goes on – I could have a lung tomorrow or months from now, although the likelihood is sooner than later.
Most get a replacement lung in time but that is also influenced by a much lower donor rate in BC than in the past – largely caused by a government decision to no longer accept donors through signing the back of your driver’s license. This decision to use a special form has resulted in BC going from Canada’s highest donor rate to the lowest - from 75% to 20 %.
Initially I was surprised to find the numbers seeking a transplant were so low but as I better understood the selection process the numbers made more sense. Age is a big factor – the older you are the less likely is your survival. Psychological factors play a part as the operation and recovery are painful and require determination. Whether or not you are in a staple family relationship also affects whether you go on the list, Statistics show that those without a dedicated and stable care system seldom survive and thus would normally be a waste of a lung. Other health factors, such as heart condition or other illness could also impact survival rates. Basically, to qualify to even go on the list you need to be relatively healthy (besides the COPD), determined, and young enough to make the transplant worthwhile and have a good social support system. You also have to be willing to live in Vancouver for on average 6 months after the transplant. During that time while the immune system suppressant drugs are being adjusted I will experience one or more rejection episodes and will need to be immediately brought back into hospital for treatment. Surviving the first six months is a solid indicator that you are likely to survive several years. I am actually looking forward to my time in Vancouver because it is temporary and because there are thousands and thousands of people there that I have never met and each has at least one experience that should be written about.
However long the wait we are lucky that we can get a transplant at all – this is not an option for the much of the world unless you are wealthy. The wealthy can go to Europe and often get a transplant in days or weeks depending on the country as some of Europe has moved to the system of everyone is automatically a donor unless you sign a form in advance specifically forbidding it – almost the opposite of here.
When the idea of a transplant was first presented to me I was somewhat put off. The idea of using a dead person’s body part seemed somewhat macabre and the concept of my getting a transplant while someone else didn’t, raised a moral quandary for me. I also had some difficulty with the amount of money being spent on a transplant for one person when there were so many other needs for that kind of funding. Eventually I came to look at a transplant as being no more macabre than a blood transfusion. I realized that those of us in need because of blood types and the other limiting factors weren’t really in competition, and I came to accept that funds for transplants would continue because it was a part of medical science that was developing. My final objections were overcome with the development of more immune system depressors and ways of handling the side effects so that I was unlikely to experience the kind of emotional upheaval that had happened during a course of prednisone when I first came to Gabriola. My view was what was the sense in being healthier if the necessary drugs made you crazy?
In addition to explaining better the whole transplant process I guess what I am trying to say is thanks not only to the society for funding transplants but also to the community here for helping with the non-covered expenses. Once again the government reasoning mystifies me in that they are willing to spend close to a million dollars for the medical side and then cut corners on the funding needed during the initial 6 months recovery time.
When I left Ontario, after going through my farewells with old friends, I decided that I would try not to make any new ones when I came here. It didn’t make sense to get involved in new friendships when my survival was so unlikely. Obviously from the community outpouring of help I am receiving, I must have failed in my attempt to make no close friendships Not making new friends was an unreal concept because as someone (Roger I think) said “Making friends is less a result of intention and more of a byproduct of whom you are” and as such we cannot really control whether or how many friends we make; all we can really do is just be whom we are. I am glad I was wrong about making friends and I am grateful to the community. I would also like to take this chance to clear up a misunderstanding, While at the time of my accident I was working full time as a diver – mostly teaching diving, arranging dive trips, crewing dive boats in Florida and a little salvage diving. Normally my diving was a way of staying sane while working in the mental health field and I would pursue it on weekends and between contracts.
I want to thank all the those that are taking part in the fundraising – Those volunteering their time and effort to organize, those giving their talents and those making donations and those going to going to the concert. I especially want to thank Roger and all the volunteers who are organizing this effort, I will thank them by name after I find out who all have been involved in Roger’s merry band of volunteers. I am glad I live here and it looks like I will be living here much longer than we originally thought back in 99. We are most appreciative of everyone’s efforts.
Thanks guys. Karen & Ian