When there is an elephant in the room, introduce it. 3 years after my wife received her transplant and endured many trials, the gifted heart has begun to fail. What lies ahead is Living on the Edge of Science. I am sharing my thoughts about this journey with the hope that it will serve some well.
Through many trials, I have created this saying: I'm Living on the Edge of Science. It is the only one that gives me comfort as the journey, while certainly more difficult on the recipients, usually does not spare those in support. I have not been spared either physically or mentally. Yet, from my basic feelings and beliefs before this all began, I have been forged into something I would not have believed possible.
The Edge of Science is the infinite source of hopes and dreams as well as the final source of frustration and despair. Yet, it is in human nature to seek hope like light. Many of the concepts of medicine today were unimaginable less than 100 years ago. Some of them were barely imaginable a year ago. They are not evenly spread amongst needs but appear after much effort and success. There are many failures along the way. What we, as support, or as the patient, cling to is hope or belief that next success will affect the outcome of what is being experienced.
Here in lies the first fact of Living on the Edge of Science: Not everyone who provides help in medicine is equally knowledgeable or skilled. In some cases, their knowledge can be as outdated as old milk and equally sour. This can happen over a period of time or can be fairly abrupt. My wife's initial diagnosis for her heart problems was well off the mark and began to take her down the path of kidney failure without any benefit to the heart itself. It took others, more aware of heart issues, to properly diagnose what was happening. By the time it was, 2 years had passed. We tried to have faith but things never improved. It must be understood that medical knowledge is constantly changing with some advancements, some changes in direction, some steps back.
The next aspect of Living on the Edge of Science is recognizing that the human species can provide a massive array of possibilities and problems yet medicine has a limited range of tools. Here it comes down to who is best skilled at using an existing base of knowledge. This became abundantly clear when my wife simply went into failure notwithstanding great efforts before being put on life support. One of the team doctors greeted me and said "we did all we could but sometimes we don't understand what and why it happened." It was a way of saying she is not going to survive. Yet, I clung to hope that the Cleveland Clinic would be able to save her as they flew a jet down to get her. Yes, they did succeed. Yet, even with their skills, there was never a definitive answer as to why it happened at all. We touched the Edge of Science and could not see beyond. There were no definitive tests. The magic word, however, is "Yet." And there are those who work to find those next tools of understanding and bless them for their work. The work on "Someday" may one day become "Today." And for every "Someday" there is someone wishing it would come sooner.
Then, there is the aspect of Living on the Edge of Science: The trial. This is where the experience is most personal to both the patient and support. While each human is unique, there are general approaches to issues. However, one must understand that some of it also involves trial and error when playing with combinations of medicines. There is a tuning, so to speak to each human. Yet, this tuning may only last a short period of time. Likewise, what may be general practice in dosages can also be a problem. So it was for my wife who needed less than 1/3 of the standard drug as a blood thinner during operations. In another case, my wife was able to both throw blood clots while profusely bleeding. Here, another department presented their case for surgery to insert a filter in her groin area. In less than 24 hours, she threw over 100 blood clots, some as long as 3 inches, any one of which would have killed her. The filter clogged blood flow to her legs and it almost killed her anyway. She made it. As support, I got the call from her while she was in extreme agony before surgery and it made for yet another 11 hour drive to be by her side not knowing what I was arriving to. We know of others who have had equally harrowing experiences, quite different from our own, and they had their trials. Here is comes down to skills, knowledge, and, I think, a bit of pure luck in timing. A blessing from a greater power, so to speak.
Finally, the greatest aspect of Living on the Edge of Science is faith or belief in what is possible. This is really the sole domain of the patient. Notwithstanding our own desires from those in support, it is the patient who must use their judgement to decide the path to walk. In support, we can share our faith in what we believe is possible and I think it is our responsibility to do so. Equally so, we need to be equally informed in our beliefs and understanding of what the patient has already endured. I was by my wife for nearly 4 months in Cleveland assisting the nurses in all aspects of her care once she left ICU as I needed to understand what she had experienced. There was another 4 months, at home, doing daily open wound changes that she would not even look upon. I did my duty and regardless of my efforts, future decisions still remain hers. And now we approach, once again, the question of a heart transplant. It is certainly not a given. The same rules apply as for the first attempt. The question becomes: Shall we try Living on the Edge of Science, again?
I will hope and dream once more for what could be.