Column: Waiting list for lung transplant can be gamble
My loving husband, Steven, was listed on the lung transplant list for a bilateral lung transplant (two lungs) at UPMC Presbyterian in February 2002.
Before being listed on any transplant list, the patient must complete an evaluation to meet certain criteria. One can’t be too sick, yet can’t be too well to make a transplant list. There is a window that one must fall into and this can be tricky. Of course, even after being listed, one must continue to fall into this window of criteria to continue being listed for an organ transplant.
It truly is a balancing act, as we have discovered. Although it may sound like a paradox, the patient needs to stay as healthy as possible and be in the best possible shape to stay on the list and to prepare for the transplant, with the goal being to keep your own lungs as long as possible. Yet, while one is striving for this goal, the question becomes should a transplant be delayed. However, if one does not strive for the goal of optimum health, they could be excluded from the transplant list due to the fact that if you are too sick you are decreasing the chances of surviving the surgery, let alone the setbacks after surgery.
Since there are so few lungs to go around the aim is to give them to patients who have the best possible chance of survival. Overall, the survival rate during the actual surgery is about 95 percent and, at five years post-transplant, the survival rate is 50 percent.
So, it is truly a gamble. Does one take the gamble of avoiding a transplant and risk dying in a shorter period of time than if they received the transplantâ¢ Or does one take a gamble and get a transplant and risk dying in a shorter period of time than if they never received the transplant?
It is a very, very complicated matter and really boils down to a very private, personal choice. But I would say that most patients go through with the lung transplant when their lungs have deteriorated to a point where their quality of life has significantly decreased and the risks of not getting a transplant outweigh the risk of getting a transplant.
Steve was born with cystic fibrosis. He is now in his 40s, which is amazing considering the fact that the median age for CF is 30 and he had a lobectomy (part of the lung removed) at the age of 20 and the doctors gave him, at most, five years to live. He had a 50-50 chance of surviving this surgery.
Steve has always beaten the odds and I know he is going to beat the odds this time too. He is on oxygen now and up until just about one month ago, he wasn’t at all. He played golf and led a fairly active life. But integrated into working full time and trying to keep active have always been the daily treatments with various CF medications, which require about three hours of time each day. These are life-sustaining medications and treatments. The nature of CF is that it can progress very fast when you least expect it, as with most lung diseases.
We always pray that Steve will get off the oxygen but we are also being realistic. Steve has battled CF since birth and it is indeed a monster that just may be winning now. Now the weapon of choice is a lung transplant and this will make Steve a winner.
After the transplant Steve will finally know what it is like to breathe but he will face a whole new set of circumstances — new medications, frequent checkups, possible organ rejection, organ failure and lung infection, as well as serious side effects from the medications. But, for most patients, this choice is the only choice. Perseverance, determination and a sense of control are very important, as well as taking care of your health, and constant communication with an understanding, responsive team of physicians, with which Steve is blessed. How many physicians will call a patient at home to see how they are doing or respond to their phone call and talk on the phone with them for an hour or moreâ¢ This kind of communication can make a tremendous difference to one’s psychological and physical well-being. The two go hand-in-hand.
CF is the most common inherited disease in Caucasians. It causes the body to produce an abnormally thick, sticky mucus. It clogs the lungs and can lead to fatal infections. This thick mucus can also obstruct the pancreas, preventing enzymes from reaching the intestines to digest food. A bilateral lung transplant is the only transplant procedure for patients with CF, since it is genetic and both lungs are affected. The surgery can be technically challenging since there is an underlying infection and pleural adhesions.
The cost of a bilateral lung transplant for the surgery alone is approximately $250,000, which most insurance policies will cover, or at least a portion of this. However, the first-year expenses are usually more than this due to medical equipment, medications at approximately $2,000 monthly, frequent hospitalizations and unexpected expenses. Many of the first-year expenses may not be covered by insurance. The medications required after any organ transplant have to be taken for the rest of the patient’s life for survival. If a patient stopped taking the anti-rejection organ medications, death would occur in a very short time. Also, it is unpredictable whether or not a person will return to work, since the outcome of the transplant is unknown. At this point, the patient would apply for disability and Medicare insurance does not cover the medications like most commercial insurance coverage. Recent legislation has been passed requiring that organ transplant medications be covered by Medicare, but there is an annual maximum that is far below the annual cost of these life-sustaining drugs.
As this article is being written, Steve’s health prognosis has been complicated by the fact that he was recently diagnosed with dilated cardiomyopathy, which is unrelated to CF. It is a heart disorder in which the ventricles enlarge but aren’t able to pump enough blood for the body’s needs, resulting in heart failure. The most common reason for heart transplants is dilated congestive cardiomyopathy. Steve’s waiting list status as a bilateral lung transplant recipient could possibly change in the future to the status of heart-lung transplant recipient.
One thing I do know, without a doubt. Steve is an exceptional person in his courage to survive, to take control of healing himself, and in working with his doctors to participate in and influence the course of his illness.
According to the United Network of Organ Sharing, in 1998 the national median waiting time for a lung transplant was 703 days, or approximately two years. In 1998, the median waiting time for a heart-lung transplant was 795 days, approximately 26 months. According to UNOS, a new name is added to the lung transplant waiting list every 14 minutes and 17 patents die each day while waiting on the list. Even through donation rates are slowly increasing, the number of patients being listed is growing even faster. Further complicating this shortage, only 10 percent to 20 percent of potential donors end up having suitable lungs for donation.
As a family traveling through this journey, we have great faith in the Lord and miracles; that no matter what one’s circumstances in life, a positive attitude is the best medicine; that prayers, love and emotional support of family and friends are priceless; and that God has put before us tools and resources that will indirectly benefit others in need. Most importantly, as in any family where there is chronic illness, it is critical that there is balance and that life goes on with the good times and special moments we all cherish and that will never be forgotten. Each day is appreciated.
As Steve’s spouse, I have to remind myself that I need to take care of myself and not let this disease take its toll on me. When you have three children, this is especially important. Keeping the disease “in check” in this way can be challenging. Both Steve and I feel we have done an excellent job keeping life in balance with effort and open communication.
You learn very quickly that there is no time or benefit to whining and complaining about life’s daily inconveniences. “Camp complaining” and self-absorption are out the window in our house.
Steve has registered a tax-deductible fund-raising account with the National Transplant Assistance Fund to assist with the many expenses of transplantation. NTAF is a nonprofit 501 (c) organization dedicated to providing assistance and information regarding organ donation. (For more information, visit the Web at users.adelphia.net/~levigold. Contributions can also be made by calling NTAF at 800-642-8399 and inquiring about the lung transplant fund in honor of Steve Merical.)
Anne Merical is the lead therapist at Westmoreland Regional Hospital Drug and Alcohol Services in Greensburg. Steve Merical, a manager with the Hewlett-Packard Co., is a committed stepdad to Anne Merical’s three children, ages 14, 12 and 8. The Murrysville family attends Monroeville Assembly of God, “a tremendous source of spiritual strength, support and renewal.” E-mail to the couple can be sent to firstname.lastname@example.org .