Still doin' Fine!

Once a month I Go to the U. Of U. Hospital , (eh..eh... a Pac 12 Research Institution), and participate in a clinical trial. Along with a 2 hour infusion of some antibodies, I go through some tests to see if the disease is spreading and how well I am holding up. The most important test I think is the breathing test which measures the lung capacity. Fortunately, I have been able to maintain the same level for the past six months, which is about 50% of normal. I will take that with a smile because it still allows me to function effectively with normal activities (including golf), without requiring a portable oxygen tank; something I want to avoid as long as possible.

Statistics say that I should be going down hill but I am not a statistic!

The clinical trial goes for 14 months and I am on the 6th month. So far there have been no side effects although we don't know for certain if I am on a placebo or the real thing. Won't know until after the trial.

All I know is life is great and I look forward to every day. I have the best family and friends in the world.

I start most every day at the Treehouse Gym in Draper where I exercise within reason and still keep up my oxygen level. It is hard some times because I want to do everything. I might be on a treadmill next to someone and your competitive instincts tell you to keep up, but you have to just walk and be thankful you can at least do that. I prefer being around people and friends at the gym rather than excercising alone. I feel being in as good of shape as possible, given the fibrosis, helps immensely. Some excercises I can perform at the same level as before, but others are near impossible. Where I could, just a year and a half ago, run six miles without a sweat, I now can't run 20 seconds without being out of breath; yet I can walk on level ground as before and maintain my oxygen level where it needs to be. Onward and Upward!

Anyway, thanks for thinking of me and I am doing fine!

Dwight

Doin' just Fine!

So far. so good!

It's been a while so I thought I ought to update this blog. I have been to 2 clinical trial infusions which I do once a month. there have been no noticeable side affects but I have no noticeable benefits either. Things have remained stable so far. Maybe I am on a placebo and that is why. time will tell I guess.

I am very thankful that I can function very well during the day and maintain my oxygen levels above 90 with normal activities. Try to jog or lift or anything strenuous and that is a different story. I am on oxygen at night and actually prefer the mask--it keeps out noise and keeps my airways open. I do sleep better with it.

Spring is almost here and I have to admit I get jealous when I see the joggers out. I am greatful though that I did have that era in my life and will always be thankful. I tried jogging with oxygen but it didn't seem to make any difference.

Anyway, Life is good!

Dwight

Made my day!

I Just received the news on a 2nd high resolution catscan. This one was done in preparation for the clinical trial study I begin this Friday. The initial Catscan was done last June showing the extent of the fibrosis. This one, which is a little over 6 months, showed no change. This could be significant or mean very little, but it is definitely good news. Perhaps whatever triggered the disease has been removed and no longer an irritant. I hope that's the case.

Now that we know what we have, we can map out our plan. I met with the lung transplant team at the U this week and it appears if that ever becomes necessary, it won't be at the U as they have an age limit. Probably it will be done on the west coast somewhere, L.A. or Seattle, maybe San Francisco. What is apparent is that I want it to be a last resort and will do everything to keep things where they are.

I am going to participate in a new clinical trial with a new drug which has shown some promise in it's early stages. There are only 150 people worldwide who will be in the 72 month study.

The only other thing I can do is follow a good exercise routine, which I like to do anyway, and keep positive, which I am anyway.

It helps a ton that I have THE BEST family and friends in the world! Much to be thankful for!

Dwight

The Plan

Welcome Home!

Hey Mom & Dad! We missed you guys over Christmas, but know that you had a great time with the family in St. George. It's better you were there anyway with the air quality in Salt Lake as bad as it was last week. I have a feeling you'll be down there quite a bit over the next 3 months or so. What a blessing it is for you to have family in a warmer climate with perfect air quality only 3 and a half hours away! Funny how the Lord works like that isn't it?

I just want to say that even though the news didn't come back the way we wanted it to last week, I have a calm feeling about all of this. I know that this is actually going to make our family EVEN STRONGER. You're the man Dad, and I have no doubt you'll give this disease the fight of the century! And YOU KNOW I have your back at all times. You've always had mine.

And Mom... We're right there with you too!

We love you guys!