Alpha Stories

Published on Tuesday, March 20, 2012

Betting on a Cure

Betting on a Cure

By Rob Williams

Part of being an Alpha has to do with information and determination – you do what you can to learn about the state of the cure and about treatment options, you do your own research and then you determine what you can live with and what you can live without. You make the best of a difficult situation and focus on the things in life that you can do, and don’t waste time on things you cannot do.

I have been physically active all my life. I’ve been an avid basketball player and began playing racquetball at about the age of 35. After about 10 years, I noticed that I was being regularly beaten by people with whom I had always been competitive. I noticed I was getting shorter and shorter of breath.

My internist initially thought I had asthma. That’s a pretty standard scenario when Alphas first seek a diagnosis of their breathing problems. I went for a cardiac stress test, where they put you on a treadmill and monitor you, and then had a CT scan. The radiologist, Dr. Robert Berlin, was really on the ball. He looked at the lung scan and saw it was consistent with Alpha-1. My internist had not had any experience with Alpha-1, but when he was given the radiologist’s report, he did the blood test and determined that I had Alpha-1. This was about 10years ago, when I was 50.

My family has been behind me all the way on this. My wife, Cindy, and my daughters, Madison and Grace, have really been champs. They understand what I can and can’t do and are extremely supportive. Of course, one major element in my life right now is that we live in Jackson Hole, Wyoming, at 6,300 feet above sea level. My law practice is here; our life is here. But at this altitude, I need supplemental oxygen all day. If we moved to sea level, I wouldn’t need it during the daytime – least for the near future. So I have to carry an oxygen concentrator with me when I work, when I go to my daughters’ swim meets and dance recitals. It has become a bit of a burden. Now, this is not an insurmountable problem, but because of Alpha-1, we have given serious thought to moving to a lower altitude. Even if you don’t have Alpha-1, it’s not always easy to keep up with your 12- and 17-year-oldkids when you’re 60.

Yes, it has started to affect my business. I know I’m starting to slow down. But for the short term, I’m OK. I still work and I still enjoy my work. In fact, I’m litigating on behalf of an Alpha right now. It is alleged that her employer gave her a preemployment physical exam when she was 30 years old, but did not tell her the results of her spirometry test. So she went to work for the company and continued smoking. Now, she is down to less than 20 percent lung function (FEV1) and is trying to get on a transplant list while dealing with other infection issues. She is a real hero in my book.

In fact, I’m involved in an insurance dispute of my own. It seems that my health insurer doesn’t want to cover my portable oxygen concentrator in addition to the home concentrator. According to them, the POC is for my “personal comfort and convenience” and is therefore not covered. So, my thinking is, I’m not going to put up with that. I believe that portable oxygen is more than just a convenience — that is, if you like to breathe while away from home, and especially for those who travel for business. We’ll see what happens.

In the last few months, I started an exercise program. I really enjoy it and I feel the benefits. I highly recommend exercise to any Alpha, both for the physical and mental boost it gives you. I got a membership in a gym at a local hospital. When I exercise, the hospital equipment gives me continuous-flow oxygen, which helps me maintain an oxygen saturation level of 90 percent or above. I can do 30 minutes on the treadmill and do many exercises that would be impossible for me otherwise.

I got involved with the Alpha-1 Foundation a couple of years after my diagnosis. I was having my annual exam with Dr. Robert Sandhaus in Denver. It happened that there was a national Alpha-1 meeting in Denver that year, and Dr. Sandhaus introduced me to John Walsh. They asked me to join the Board of Directors and I was happy to accept. I try to go to as many meetings as I can. The Foundation board members and executives spend so much of their time trying to fund research to find a cure, generate dollars for research and awareness, and help other Alphas maintain their quality of life. Sometimes I can’t do as much as I would like because of the demands of my law practice, but I try to keep up on issues like early detection programs and the need for Alphas to get as much exercise as they can.

I’m also on the Foundation’s Development Committee. That involves looking for new and innovative ways to raise funds for the Foundation so it can fund scientific endeavors, achieve its goals and ultimately find a cure. Everyone on the committee brings their own life experiences to the group. For instance, one of my interests is poker. I play in a weekly game of dealer’s choice here in Jackson Hole with eight or nine friends. I’ve also participated in a few World Series of Poker events — with only marginal success.

So, naturally, I thought that poker might be a good way to raise funds for the Foundation! It would be great to have a tournament in, say, Miami, and find a high-profile celebrity or sponsor to help promote the event. It’s only in the discussion stages right now, but I think poker tournaments could be another way to bring much-needed money into the Foundation.

Being an Alpha is an up-and-down thing. Sometimes, you think about the bad things. Like when you first heard of the disease, and looked it up on the Internet. That’s where you read prognosis after prognosis, and it’s never positive. But then you notice the good things. In my case, the upside has been that I’ve met absolutely wonderful people like John Walsh and Dr. Sandhaus, Janis Berend at National Jewish Health and all the great people at the Alpha-1 Foundation. You meet the researchers, the physicians and the scientists who are so committed and so generous with their time and talent. And you do get the feeling that you are not in it alone. Not by a long shot — and there are lots of good things happening.

Article first published in Alpha-1 Magazine in Winter 2008