Fall 1998 Newsletter: Patient and Parent Perspectives

Patient and Parent Perspectives

Lung Transplant is a Difficult Decision

by Jimmy Lanier

I had a lot of concerns before actually having my transplant, but the biggest one was probably getting lungs that were not a great match and it would not be successful. I was a little scared, but I did not have a choice to have it or not because I was so sick. The morning that I got my call, I had a peace about it. I was nervous but got calm and knew things would be fine.

The social worker really helped me out because she told me the good and the bad sides. It helped to prepare me. The pain lasted about six weeks, but they gave me medicine to help me. I don't necessarily look at it as a cure or trading problems, but just having a different set of problems. I had a lot of rejection problems at six weeks, a little less at nine weeks, and then a only a few at nine months. I was fortunate to have a good match. I think that is the main reason that I am doing so good today.

I am so much better now and am glad that I had the transplant. I would do it over again if I had to. If I could say anything to someone about to have one, it would be that you are still going to have to take good care of yourself.

Is it really worth having a lung transplant?

by Karlin Henze

Based on my experience, I would say emphatically, "Yes!" My quality of life has improved tremendously since my lung transplant on April 15, 1995 at the University of North Carolina Hospital. Prior to my transplant, my care was very strenuous. I was required to perform chest therapy twice per day, take intravenous antibiotics at least once per month that I administered to myself at home through my port. I was required to take enzymes, oral antibiotics, daily vitamins, and was on supplemental oxygen full time because of shortness of breath.

Today my quality of life is much improved. My routine consists of measuring my vital signs and FVC and FEV, using a hand held spirometer, once a day. My blood is drawn at the hospital lab once every three months. My regular hospital visits to the transplant clinic are twice a year. I take four transplant related medications and vitamins every morning and evening along with continuing to take enzymes while I eat. I no longer perform chest therapy, use supplemental oxygen, or supplement my diet with high calorie, high fat foods.

A few years ago I was diagnosed with diabetes, which I take insulin shots to manage. My port was removed about four months after my transplant. My PFT's are within the normal predicted range now and I feel great. I am no longer short of breath. In fact, I have been able to travel lately. I have not once regretted my decision to have a transplant and would have a second if it ever became necessary. Even though my experience has been a rewarding one, undergoing lung transplantation is difficult and risky, and the outcome is not always favorable. I know that I am fortunate.

During my evaluation for transplant, my doctors told me that I was substituting one problem for another. The decision whether or not to have a transplant is a very personal one, and patients must be aware of all possible complications in order to make an informed decision.

Advice from a mother whose daughter had a transplant in 1995

by Mrs. Linda Barker

I am the mother of a 24 year old daughter with Cystic Fibrosis. Three years ago, she underwent a living donor lung lobe transplant at the University of South California's University Hospital. My daughter, Staci, was diagnosed with CF at the age of 6 and was a frequent patient in Children's Hospital until she had her transplant, but was able to lead a fairly active and productive life. However, three years ago, her health took a drastic turn for the worse and the infection in her lungs created a life threatening condition. She was confined to Children's Hospital for several weeks, often in intensive care.

It became obvious that she was not going to recover unless drastic steps were taken. My husband and I had heard of a new procedure that Dr. Starnes at USC had pioneered where living donors were used to donate lung lobes that replaced diseased lungs in their entirety. Dr. Lyrene at Children's Hospital initiated discussions with Dr. Starnes' staff and it was determined that Staci was a good candidate for the transplant. We discussed the operation with Staci and while she was concerned that other's lives would be put in jeopardy to save hers, she realized that this was her only chance to live and reluctantly agreed.

Within two days, Staci was on a MedFlight to California. Originally, it was planned that my husband and I would be the donors, but the conditions of our lungs prevented that. After many discussions, phone calls, volunteers and tests, two of Staci's cousins were determined to be the best candidates for donation.

The surgery was performed on July 14, 1995 and all went well. After a month in the hospital and another month in the L.A. area, Staci returned home in mid-September with a new life to live. To counter rejection and infection, she takes daily medication, but NO MORE CHEST PT!

"She still has CF and all those things that go with it, but her new lungs

are clear and will not be invaded by CF"

My advice on getting a transplant is "go for it" before it's too late. If you have run out of choices, you really have nothing to lose. It ultimately has to be the CF patient's call since they must go through the physical and mental ordeal. All outcomes are not as good as Staci's, but I still feel it is the way to go.

Mothers never stop worrying about their children, but having a happy healthy child is worth all the worry, pain, and expense that naturally comes with transplantation. Staci is now a senior in college, majoring in sociology, so that she can help others. Oh yes, she was married in May.....a dream that we never dared to dream! I never dreamed it possible for Staci to be as healthy and happy as she currently is.

Light at the End of the Tunnel

by Leslie Hines

When someone goes for a lung transplant, a family cannot help but have hope that everything will turn out OK. We had hoped to have many years without "pat-pats" (CPT), aerosols and oxygen. We received only four short months. My daughter died shortly after her lung transplant and it appears that we lost the battle. The only thing we truly lost was the joy of seeing her beautiful face everyday. We retain the hope of our Father, who has graciously provided for our eternal life. Rachael has gone home and we will join her in heaven. God's grace is what you stand on when hope seems to be lost.

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