Community Commentary: ‘Catastrophic disease’ survivor gives tips

Thanks to Cindy Frazier for her detailed and poignant account of her encounter with cancer at a relatively young age (“Canyon To Cove: Facing the Big C,” June 10). I am dealing with a similar situation and have a few suggestions. When I’m back up to speed, I’ll put more into a short book designed to help other victims of catastrophic disease.

My problem was pulmonary fibrosis, a fatal hardening of the lungs. The only solution is a lung transplant; age and health determine candidacy. Both worked in my favor, and I received two lungs at UC San Diego in November. Recovery went well, but a life-threatening complication arose that turned out to be every bit as challenging as the lung disease.

I’m recovering now. It’s slow but working.

Some suggestions:

•Enlist the help of your closest allies: God, your family, friends, a great medical team, and your own attitudes and beliefs that you can overcome this challenge. They will be by your side through the entire tribulation.

•Never give up.

•Get to the right doctor for a correct diagnosis; you do not want guesswork to slow you down.

•When you hear the diagnosis, don’t panic or jump to conclusions. Let it sink in and talk about a plan of action with the doctor and your family.

•If you need surgery, identify the leading “teaching” hospitals for your disease. They will be more “cutting edge” than non-teaching facilities. Try to identify the finest specialists and surgeons. Work with your health insurance company because contracts will vary among facilities.

•Watch your overall health. You will need physical, mental, emotional and spiritual strength to survive. Eat well, sleep well and stay in shape. If you become bed-ridden, do the best you can in all three areas.

•Listen to your body and work with your medical team. Be an active participant — nobody knows how you feel better than you do.

•Before surgery, complete a will and advanced medical directive.

•Be prepared for the hospital experience. You will be surrounded by triumph and tragedy. Remember that positive attitude.

•Be ready to be exhausted — you’re going to use your mental, physical, emotional and spiritual reserves.

•Take your medications. If you have problems with them, call the doctor for adjustments — don’t make medication decisions on your own.

•Be prepared for curve balls.

•Accept changes in your personal priorities. Some things lose all importance and others come to the forefront. You’re better off.

•And when your spirit weakens — and it will — go back to the first bullet point.

On a personal note, I thank my wife who had to juggle her job, a graduate program, our pets, household disasters from the December flooding and a sick husband. This experience is probably as difficult for the family as for the patient. And thanks to our family and friends who helped us then and now pull it off.

JOHN CHAMBERLIN lives in Laguna Beach.