Alpha 1 Antitrypsin Deficiency is an archetypical medical term that on the surface doesn't appear that serious. Doctors and researchers are great at coming up with jargon, aren't they? Heck, "deficiency" doesn't sound life threatening at all, merely hinting at a lack of some substance your body needs to work properly. Just pop a needle in a syringe, inject some Alpha 1 Antitrypsin, and the person suffering from this infirmity can go on his or her merry way. Not quite. According to Jean Lynch's experiences with her daughter Linda, who suffered from and ultimately passed away due to this genetic lung disorder, Alpha 1 Antitrypsin Deficiency is a deathly serious matter that, if left untreated, will eventually cause the demise of the afflicted person. Alpha 1 is protein manufactured in the liver that helps protect our lungs from an enzyme released by white blood cells. If the levels of this protein drop or cease altogether, this enzyme will relentlessly destroy the elasticity of the lungs. The result should be apparent at this point: as lung tissue deteriorates our bodies cannot absorb the necessary amounts of oxygen needed to live. Death caused by this genetic disorder is slow and agonizing.
There is hope, however, if physicians catch the disease early. Drugs are always an option, and a lung transplant can help prolong life significantly if the body does not reject the new organ. Sadly, Linda failed to respond to either drugs or a transplant. Doctors, ever the ruthless pragmatists, decided not to perform another transplant when the first one failed. Enter "The Gift of Life," a book that captures perfectly the hope, the indecision, the guilt, the agony, and the other thousand or so emotions inherent in dealing with a sick loved one. Compounding the tragedy contained within these pages is the fact that we have a mother struggling to save her eldest child, a mother who worked as a registered nurse with terminal patients for decades. The experience gained from years of watching others slip away provides little relief when dealing with your own flesh and blood, and Lynch's account contains all the frustrations and angers that arise when dealing with the byzantine structure known as the American medical establishment; a medical establishment that won't give a woman another lung transplant when the first one failed to take. A medical establishment that shunts patients off to hospice care when a chance for recovery could still exist. A medical establishment that allows interns to tell patients they probably won't receive further treatment because they won't live.
Jean Lynch's chronicle of her late daughter's illness rocked me to the core because I'm currently watching a loved one struggle with terminal lung and bone cancer. Like Jean and Linda, I've sat in hospital rooms for hours on end praying for the time that we could take our family member home. I've listened to four different doctors--or more, there are always more doctors--give four or more different opinions on why my relative is in the hospital again. I've heard a doctor hand down a death sentence with more finality than a prisoner guilty of capital murder ever heard from a judge, only to learn a few weeks later that the latest, last hope treatment appears to be working. I've seen a loved in one in so much pain that she could only lie in bed and shake with agony and fear. I've seen family members trying to cope with the impending tragedy and ever present uncertainty in ways good and bad. It is difficult, if not impossible, to go through what Jean and Linda did without feeling anger at those around you. At the same time, the anger is often irrational when placed into the larger context of the tragedy. But that sort of reflection comes much later, apparently, and not in the midst of visits to the doctor, painful treatments, and all the other nastiness that comes with a terminal illness.
The book concludes with protracted and agonizing descriptions of Linda's final days at her mother's home. Jean and her other daughter Sandra cared for their relative right up to the last moment with only minimal assistance from hospice nurses. I'm surprised that Linda stayed with her mother and not in a hospice ward. My ill relative has made it abundantly clear that she wishes to spend her last days in a facility where she can receive around the clock care, primarily to save us from the agony of watching her expire at home. These discussions on hospice care highlight a situation that is assuming great importance in the medical field. As the American population ages millions will soon have to make a decision about where and how they wish to spend their final hours. How will people afford this treatment? Will the government provide assistance? How will hospice change to meet the growing demands placed upon it by society? Jean Lynch brings to light another important aspect of this seldom discussed treatment, namely who decides which patients go into hospice and when. Lynch expresses anger that the doctors wrote her daughter off as a lost cause when options still existed to extend her life. These are problems most of us will face far too soon.
I won't say I enjoyed "The Gift of Life" because it is not the type of book one reads for pleasure. What it does do is provide a record of a personal tragedy extraordinarily close to when it unfolded. Lynch's narrative is almost stream of consciousness in that the reader gets the sense the author threw everything down on the page before she had a chance to work it out in her own mind. Since I am going through a slightly similar situation right now, trust me when I say that many of her thoughts and feelings are totally authentic. "The Gift of Life" is a tough, demanding read that will hopefully find a wider audience.