My wife, Sandra, and I live in California. We have two very supportive daughters, a dedicated son-in-law and two beautiful granddaughters. I’ve been retired now for about a year and a half. I had my own business, Rock & Associates, for 35 years.
I’m a caregiver for Sandra, who was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2001. When she was first diagnosed, she was given three to five years to live, but she’s far surpassed that. She continues to live one day at a time, and she has a great attitude about everything. She’s a fighter.
Not long after she was diagnosed, Sandra started a support group in Northern California with a nurse that has since passed from the same disease. Sandra handed over the reigns of the support group about a year ago because of her health. There are still 40-60 people who attend the support group on a monthly basis and Sandra continues to take phone calls at all hours of the day from people all over the country. She continues to offer support by acting as a resource, and telling others where they can get more information.
When we started calling on Congress in the early 2000s, IPF was generally not known. We kept hammering away, talking to anyone we could and doing our homework. After about four or five years of lobbying we reached a milestone in raising awareness—a House Resolution was passed that identified IPF as a terminal disease.
We still need to bring more awareness to the disease; what it does, how many people it affects, how many people die of it every year. When you’re given the diagnosis of IPF, you’re numb. You don’t know where to turn, or what to do. CVC has been stellar in getting information about IPF out to people and helping them with their condition. There have been big strides with new drugs that are coming out, so I think there’s a lot of hope.
I joined the CVC Board of Directors in early 2015. I’ve enjoyed every moment and I’m honored to serve the organization. Working with staff, directors, and other patients at CVC has been outstanding.
The thing that I find so interesting about CVC is its ability to work on a very personal level. I have a friend whose 18-year-old daughter was diagnosed with pulmonary hypertension. It was devastating. I put them in touch with CVC and they were connected with people who offered support and assistance with her diagnosis. That’s CVC in action. It’s a wonderful resource for many people who are very sick, and very scared.
To be a part of that, you can’t put a dollar amount on it. It’s just tremendous.
The message I want to get across is to hold on. When you’re suffering from a disease, don’t give up. There are people out there who are willing and able to help you so don’t quit. Keep going. Be persistent and don’t take no for an answer. Always be your own best advocate. It’s your life.