How would you like to go to a pulmonologist and have him tell you there is nothing he can do for you? How would you react if he said that you should go home, get a rocking chair, and take up knitting?
In 2014, I was officially diagnosed with pulmonary fibrosis (PF), which is scarring and hardening of the lungs. I had been diagnosed in 2007 with a small amount of scarring in the bottom of my lungs after a procedure. The same doctor saw me both times.
Lifesaving phone call
After my PF diagnosis, my husband, Ralph, and I decided we still wanted to take the road trip we had planned to Canada and parts of the U.S. We had no idea that I would have a bad reaction to the prednisone the doctor had prescribed. After about a month on the road, we landed in Calgary, Alberta, for a visit with all my first cousins. Even though I did not want to share with them that I had PF, they all soon realized something was definitely wrong with me. They persuaded us to go home and not continue our trip.
We took their advice and headed back to California via Colorado Springs, where two of my daughters live. On the way, I started feeling unwell. I was drinking a lot of water and going to the bathroom continually. I called my pulmonologist, but he did not call back, so we continued to Colorado Springs. We spent the night and were planning the last three days of our trip home. Finally at 5 p.m., the doctor called and said to check my blood sugar. If it was over 200, he said to go to the emergency room. Well, it was over 300, and by the time we got to the hospital, it was 600.
The ER doctor told us that if we had headed out the next morning, I would have been in a diabetic coma on the side of the road in the desert with no cell phone service. He said I was one lucky woman. I was in the hospital for three and a half days until they regulated my readings. They sent me home with instructions for the three-day drive to check my blood sugar regularly and how much insulin to give myself.
I made appointments with my doctors starting the day I got home. My first one was with the pulmonologist, who had me do another pulmonary function test. He told me I was worse and started decreasing the prednisone because it was not helping. Then he said there was nothing else he could do, and that I should go home, get a rocking chair, and take up knitting. Well, he didn’t know me very well.
How many of you here today have ever experienced this reaction from a doctor? Because of what he said, I went into a deep depression and even started to write my obituary. I sent out an email to 267 of my fellow golfers, as I was president of my golf club, to let them all know about my diagnosis and what I was going through. Within minutes, two of my golfer friends called to tell me they knew a pulmonologist associated with Cedars-Sinai Medical Center in Los Angeles, and they were calling him to get me in for a second opinion. Ten minutes later, I had an appointment for the next morning. This is what kind of friends I have.
But the second opinion, and later the third, came back with the same diagnosis. I could not get out of my depression until someone suggested I attend a support group. All I did was cry during the first meeting and could not participate. Afterward, the nurse who ran the support group asked why I wasn’t in her pulmonary rehab. I said the doctor told me it wouldn’t do any good. She asked who my doctor was and I told her I was mainly dealing with his physician assistant. She said to call the PA and get her to prescribe rehab, and she would follow up.
A week later, I got the call to come in and begin rehab. It was the best thing I did. I not only got to work out and attend classes with Ralph on every aspect of the disease each week, but I also got to meet others who were in my same situation.
More divine intervention
We requested that a new pulmonologist be assigned to me, and after a 45-minute evaluation, the new doctor told me to lose weight, eat healthy, and get back out on the golf course. I said, “You’re hired.” But even with these changes, I still was not able to cope with my newly found disease.
A friend who works out at our local gym met a woman there with idiopathic pulmonary fibrosis (IPF) and had her call me. She came over to my house to talk and bring me some literature from the Pulmonary Fibrosis Foundation (PFF). Her name was Noella and she had been living with IPF for 10 years. She was 82 and only had to be on oxygen when she slept at night. I told her I would read the materials and bring them back to her house, which turned out to be just down the block.
That Sunday, Ralph and I went to church, and who should be sitting right across the aisle? Noella. I couldn’t believe my eyes. She had been going to church there as long as we had and I never noticed her before. From that Sunday on, when the Mass was over, she and I would walk out of the church arm in arm. We would chat and see how each other’s week had gone.
‘Angel on my shoulder’
Some months later, Noella fell on the way into chair aerobics class. She finished the class, but when she went home, she didn’t feel right and called 911. At the hospital, they found that her oxygen level was critically low. They said the fall may have been caused by light headedness and she needed to be on oxygen 24/7.
Noella was a very private person. Always beautifully dressed, she did not want to go out in public wearing oxygen. I talked to her and got her to order a unit that she could carry on her shoulder when she went out shopping or to church. It was a real struggle for her. She tried it, but she became depressed, and soon I was not seeing her in church. I decided I needed to reverse our roles and become the supportive one. We began walking by her house daily and stopping in to visit. But I could tell she was progressively getting worse. Then we got the dreaded call; Noella had passed on.
We were invited to a memorial service at her home, and her niece gave a eulogy about what a great person she was and how she had found out she had PF. Then they asked if anyone else would like to speak. The room was silent. All of a sudden, something lifted me off the chair and I said, “My name is Elynn Kennedy, and I have pulmonary fibrosis.” I told them how we met and how Noella had been an inspiration to me. She gave me hope to live with the disease and deal with it on a day-to-day basis. She was an angel on my shoulder, and I believe she was the one that got me to stand before her friends and family and tell the story of what she had done for me.
A week later, our doorbell rang and it was Noella’s niece and her husband. They brought me Noella’s portable oxygen unit and said they felt she would have wanted me to have it. I use it a lot and, every time I put it on my shoulder, I think of her and miss her terribly.
Living a meaningful life
My point is to help you understand that there are people to whom you can relate, people who can help you in many ways to continue living your life with meaning. The Pulmonary Fibrosis Foundation can help you find them. You can reach out to them at pulmonaryfibrosis.org for support and information.
Thanks to Noella’s inspiration, I am not letting PF hold me back from doing the things I want to do. l still golf twice a week; take long road trips in our sports car; and continue to live my life using oxygen at night, upon exertion, and when I climb above 1,000 feet in altitude. No rocking chairs for me. A year after my diagnosis, Ralph and I took a six-week trip to Ireland and Scotland and even climbed to the top of the Blarney Castle. Ralph was right behind me carrying my six-pound portable oxygen unit, while I was in front of him climbing the narrow, twisted stairs.
I am ever so thankful for the many people in my life who have reached out to inspire me and give me hope. That is what I would like you to take away from this meeting today—hope and inspiration. When people ask how I do it, I say, “Faith and attitude, and boy, I sure got the attitude.”
In closing, do not be afraid to ask for help on how to deal with your disease. I am one of you, and I am here to help.