On April 29th Ann and I, along with our driver, son Rick, had our long awaited appointment with the UCLA Medical Center specialists in lung diseases. After a review of the many test results they both came to the conclusion that I had a rare form of Ideopathic Pulmonary Fibrosis. It is so rare that they do not have anything that they can do for me at this time. Some forms of fibrosis can be treated with steroids but not this one. They said that my condition will not get better but they hope to be able to slow down the progress of the disease.
We had one pulmonary function test to share with the UCLA doctors. They want me to take one every three months and return to them with the results. They will review the results comparing the current one with previous ones. Our next appointment with UCLA Medical Center is June 24th. It will take a couple of these visits before they will consider any direction that might be of benefit to me.
The UCLA doctors said that I could resume playing golf. We talked to our regular doctor today and he said that I could -- as long as I rode in a cart, had someone else along with me, and took my portable oxygen system in case I would need it during the game. This is going to cut down my golf playing time. I can take a cart and have my oxygen system there but I can’t always have someone with me. Most of the time I play alone or join someone who happens to be there and ready to play at the same time. I used to have a regular golf partner but that stopped a couple of years ago. If I have someone and they are playing too, they can pay their own way. If I take someone along to drive the cart and keep and eye on me, I will have to pay double for the cart and pay their green fees as well. That is the rule. No one is allowed on the course unless they pay for playing even though they will not have clubs with them. As I stated, this will cut down on the number of times I can go out and enjoy a round of golf.
Ann and I have been taking walks at Santa Margarita Lake which is one mile around. I pull my portable oxygen system as it is on rollers. Ann is in her electric scooter. One time around each time. We have done three of these walks this week so far and will probably go out tomorrow.
We had many blood tests recently and have checked back with my hematologist yesterday because the results have varied. He checked them and said that everything is fine. Stress will cause the tests to vary and you know I have been under a lot of stress lately. So the blood is fine!
I am still coughing more than I want to and out of breath on occasion. As Ann has stated in her last update, “All in all, it is now up to God to determine his days.”
UPDATE: Our meeting with Jim Barnett at Mission Hospital Pulmonary Rehab went very well. He is the most upbeat person we've met in this struggle to get some answers to this health problem. He is a golfer - in fact a ranger at a local golf course and says that I could go out golfing without anyone with me as long as I use a cart and take the oxygen machine with me. He said that he has had some of the patients who are much worse off than me out on the golf course with him and they didn't have any problems. He feels that when I get into the June 22nd rehab group that I will be able to learn how to handle most situations and live a normal life. I like this guy!