Interview with 's daughter

[Guest guest]

1. How did you first hear that you were terminal? Diagnosis was March 2006. My familiy doctor got the High Resolution Cat Scan report and called us letting us know that it was interstitial lung disease. Then we went on line and read the prognosis. The following day we met with the pulmonary doctor who ordered the HRCT scan. He said that there was nothing he could do for me and discharged me. Then he said that Penn and Temple have departments that specialize in this disease, if I want to I could call them. So I called Penn and took the first available Pulmonary doc. 2. What was your first reaction? Disbelief. It wasn't my body, it was someone else's body. 3. Who was the first person you told? Jerry received the call from the family doc, so he already knew. I guess I called my adult daughters. 4. What was their response? don't remember, they went on line and were very upset 5. How did you inform the rest of your friends and family? don't remember, probably by phone call, email and in person 6. What were their reactions and did they surprise you? The first reaction for everyone was "What is pulmonary fibrosis?" A lot of people didn't know what to say. Everyone was waiting to hear about the results of more testing and what the doctor had to say. It was a relief when we found out that there was no honeycombing, and I wouldn't need a biopsy. It wasn't end stage. 7. Has knowledge of your diagnosis changed the way others treat you?

Not sure. Jerry is very protective of me at times. In the beginning I thought he was more upset than I was. I didn't use supplemental oxygen in the beginning. It was like an invisible disease. There were lots of mixed emotions. My granddaughter was born the following month, April 2006; and a grandson was born about six months later, September 2006. My children's father has ALS, so they have been dealing with a parent with a fatal disease for several years. He is in worse shape than I am. 8. What treatments, if any, did you try? The pulmonary doc prescribed prednisone, n-acetylcysteine, immuran and pulmonary rehab. He referred me to the transplant team just in case I need one down the road. A three day evaluation for transplant was done July 2006. In September 2006, the pulmonary doc ordered supplemental oxygen in the house to use on exertion. It was several days or weeks before I even checked the equipment. When I finally started using it, I did it gradually. Walking the dog, carrying it to work and using it when walking from the car to the front office, taking it off in the classroom, then eventually using it when escorting the children to other rooms in the building. I think the bigger issues for retiring were getting short of breath and not being able to talk to the children. Reading a story book became difficult. Being around kids, I caught lots of colds. Getting short of breath while walking around the hallways and wondering if I would be able to make it back to the classroom. 9. Did you try any unconventional treatments? No 10. What changes ( mentally, physically, emotionally) did you make in your life because of your diagnosis? I like to garden. In the beginning, I wouldn't plant anything that would take too long to grow, because I wasn't sure I would be around to see it. Went to rehab, learned to use gym equipment--treadmill, strength training, etc. Moved into a new house about six months before diagnosis. Decided to redecorate quickly so I could enjoy it while I was sick. I pictured myself being too sick to do any thing except lay around the house. So I wanted my surroundings the way I wanted them. In the beginning I was very upset. I felt doomed. Then when I went for the transplant evaluation, there were people in the building who had recently had lung transplants. They were very happy with the transplants--no more oxygen, they could move around easily. I saw a light at the end of the tunnel. It really gave me a lift. Then at the

Christmas Party for people with lung transplants, we met more people and felt more optimistic. Continued to live my life as usual. When I went on oxygen, working became more difficult, so I retired on disablity. Now the quality of life has changed. Need to take oxygen all of the time. If I go someplace, need to make sure there is enough. Wear oxygen in the shower. Tire easily. Don't do as much as I used to do. One or two errands is usually enough. Stay home a lot more since I stopped working. Some months are busy with doctor appointments and of course there is rehab. Loss of income due to retiring on disability and paying for medical insurance are big issues for me. There are lots of things I don't do because of financial issues more than because of my health. 11. Has your terminal diagnosis made you look at life

differently? Not sure how to answer that. Intellectually I know it is terminal, but emotionally it doesn't feel terminal. The terminal part is still waiting to happen down the road. 12. What advice would you give to others? Go to a teaching hospital. Get the best medical care that you can get. Continue living your life. Create a "bucket list". Try to reach some of your goals. Find a support group like the one on line. Continue to live as normal a life as possible for as long as your health allows you to. Positive outcomes with this disease: When from being a non athlete, to someone who goes to the gym at least twice a week. Meeting new people on line, at rehab, etc. I am having a problem sending this. I hope I don't lose it before sending it. R. (52) Sarcoid/PF 3/2006 Carlsbad, CaliforniaPink Joyce IPF 3/06 Pennsylvania