Fight Club: Sandra Rock’s Struggle with IPF

Sandra Rock describes her struggles with idiopathic pulmonary fibrosis and her fight to promote awareness of and funding for the disease.

I had surgery and I had been on IV antibiotics for 15 months. Once I got off the antibiotics, within a couple of weeks, I started getting short of breath, and it just got worse and worse. By the time I finally got to see a doctor, I couldn’t walk across the room without being short of breath.

I saw my primary care doctor and she took an X-ray and said, “You need to see a pulmonologist,” so she connected me with one here in Sacramento. I had a CT scan done, and at that point I had lost 50 percent capacity in both my lungs from the inflammation.

Back then, in 2001, when I was diagnosed, idiopathic pulmonary fibrosis (IPF) had just been recently classified as its own disease, so there wasn’t a lot out there about what to do.

As I tried to find out more about IPF, I got in touch with the Coalition for Pulmonary Fibrosis and I started a support group for patients and caregivers.

I went to pulmonary rehab, which is a lifesaver, because you never think about how hard it is to bend over and get the clothes out of the dryer, or bend over and empty the dishwasher, or even to just get out of a car. It’s so taxing when you don’t have the breath to do it, so pulmonary rehab really, really helped.

In rehab, I met a nurse who also had IPF, and she and I started the support group together. I had a clerical background, being a secretary, and she had a nursing background and couldn’t type, so together we made a good team. Unfortunately, she passed away two months after we started the group. Her disease progressed rapidly.

I continued the group until two years ago, when my health wouldn’t allow me to take care of it anymore. It’s been very, very hard. Over that 10-year period, I would estimate that I lost 102 friends who were support group members, watching them get sicker and sicker, and even speaking at some of their funerals, and being with them on their last days.

At our first meeting, we had five people, and all five of the original members are gone. But, when I turned the group over, there were more than 60 people in it. I know it helped people, because the families would tell me so; they would write me letters and thank you notes. I know it’s been a big help to everybody as far as learning about living with pulmonary fibrosis.

Now you can go anywhere and learn about it, but back then, there was nothing on the web. You get the prognosis and it says three to five years, and you think ‘Oh my God.’

I was just a little over 50 at the time. One of my daughters was in college, and one was engaged, and I’m thinking, ‘My God, I’m not going to be here to see her graduate, or ‘I’m not going to be here to see her get married.’ It’s devastating. I made a bucket list of things I wanted to do before I died. That’s the way I looked at it.

I got a second opinion at UCSF, and they said that I didn’t have IPF, that I had hypersensitivity pneumonitis, and it changed my prognosis from three to five years to seven to 10 years. Then, I had a lung biopsy and we sent it to Mayo, and they said that it was definitely IPF.

There’s no FDA-approved treatment. There’s no cure, except a transplant. You have to meet certain criteria for the transplant, and, unfortunately, I don’t meet the criteria, due to other underlying diseases, so I’m just waiting. Because that’s all you can do, once you realize that you’re not a transplant candidate. So you just make the most out of every day and pray that you don’t have an exacerbation.

I did very well for many years, and then I had an exacerbation. I was on a plateau for many years. And something happens—they don’t know what causes it—but suddenly, there’s a decline. And so I had to start using oxygen at night.

As the years have gone by, I’m still using oxygen at night and for any kind of exertion. I have about 40 percent lung capacity now. I can pretty much function on a daily basis, with no problems, but when I go out and about, I do have to use my oxygen.

I’ve had the opportunity to work with CVC and the Coalition for Pulmonary Fibrosis over the years. My husband and I were both privileged to go with them to Washington, D.C., to speak to the congressional community.

Every year, we would go back and do what we could, to just try to get somebody to recognize us and understand that there needed to be more research and funding appropriations for IPF.

Fortunately, the coalition met Representative Charles Norwood, and he was nice enough to take us in, and we managed to actually get a bill passed recognizing IPF as a terminal disease and the need for more funding.

We were actually sitting in the gallery of the House of Representatives when the bill was passed. The tears were flowing like crazy, and there was another girl who had IPF at the time, who was sitting next to me. Finally, we accomplished something for IPF.

In the U.S., there are up to 200,000 people with idiopathic pulmonary fibrosis and 48,000 new cases every year. We lose 40,000 patients a year, which is the same as breast cancer, but not enough people know about us, about the disease.

We don’t have a spokesperson at this point. Some celebrities have come out to speak, but others, who have passed from fibrosis, haven’t, which would have been a big help, because they were pretty well known people.

IPF causes scarring of the lungs, and that part of the lung will not transport oxygen. [Symptoms can include] shortness of breath, and some people have a dry cough. They cough into spasms almost. It’s very fatiguing, of course, when you can’t breathe, and on bad days, are very weak. Some people have weight loss and also clubbing, which is rounding of the fingertips and the toes, as the disease progresses.

I think what’s important for the newly diagnosed to know is, not to give up, to do the pulmonary rehab, and not to let vanity stand in your way of using oxygen. Be an advocate for yourself, as far as your doctor is concerned. If you don’t like what he’s saying, find somebody else. Get a second opinion.

Finding a support group is very, very important. As much as your family loves you and cares for you, they don’t have any idea, really, what you’re going through, and only people who are going through the same thing know. That’s the first thing I always hear when a new person comes in, that it’s so nice to be around people who understand what you’re going through.

The big thing is to be your own advocate and not just accept. If your doctor says that you’re not qualified for a transplant, don’t accept that. We had a guy in our group who was 70 who had a transplant. Most people who get this disease are over 50 years of age. Just don’t stop if you don’t like the answers.

Some people, when they hear “three to five years, no cure, no treatment,” they just give up. Or they’re embarrassed to carry the oxygen around with them, so they sit home. They don’t travel. They don’t do anything anymore. That’s so very hard to see and to understand.

There’s definitely research going on, and the good news is that two drugs were recently approved by the FDA. They’re supposed to help with the progression of the disease. There’s hope. At least it’s a treatment, not a cure.

I was born right here in Sacramento—born and bred in California. I have one brother and one sister. I’m married to a wonderful man, Jim. Without his care and love and support, I know I wouldn’t be here today, because of all the sicknesses that I’ve had.

We have two beautiful daughters, Rachelle and Julia. Julia lives here in Sacramento, and Rachelle lives in Arizona with her family. We have a wonderful son-in-law, Ernie, who helps out whenever he’s around, and two adorable grand daughters, Olivia and Iris.

I love to go antiquing. I love to go to festivals and concerts. A park nearby has dancing on Sunday nights during the summer, so I just take my oxygen with me.

Normally, I get through about three-quarters of a dance, and then I have to go back and get some oxygen. Last year I did have smaller tanks, and I used to put them in a backpack and strap them on my back and be able to dance for a longer period of time.

That’s been special to me—to able to dance with my husband again. We like to waltz and swing dance. But, unfortunately, in 2009, I had a reaction to a medication that left me paralyzed on both sides of my body. Through rehab, I have regained about 75 percent, but my right side
doesn’t function as well. It’s kind of hard to
swing dance when your leg doesn’t move around as well as it used to.

I walk with a cane now, and when I’m out and about. I love to shop, so I use my Rollator walker, and I just put my oxygen and my purse on there, and off I go.

I go to the state fair every year. I use a scooter and spend about four or five hours there. Really, I just love walking around. I go to art festivals. I go to home shows. Just give me something to go to, and I’m there walking around.

I love plays. We go to the theater several times a year to see musicals and any kind of drama. Jim is my guardian angel and caregiver. He waits on me. He cooks, cleans, does laundry, does the dishes, grocery shops and tries to provide me with “maximum happiness” every day. Some days, you just wake up and hurt all over without doing anything.

But I try to do the best I can. I’ve still got to do a hot air balloon ride, parasailing, and snorkeling. I love Disneyland. I love the Tower of Terror. That’s one of my favorite rides at the California Adventure, which everyone says I’m absolutely crazy doing. We’re going to Disneyland at the end of October for my granddaughter’s third birthday.

So I just get my scooter, and off we go. I don’t have to use my oxygen as much when I’m on the scooter.

We went on a cruise to the Eastern Caribbean this year that we’d been planning for six years, and we’re planning another one next year. I got to go in the beautiful water in St. Thomas and swim around for a while. We had an absolutely wonderful time, so we now want to try another one.

It’s very important to go out and be around other people. It’s so important to stay active, to try to exercise several times a week, even if it’s walking two doors down and two doors back. That keeps the lungs functioning, and the more you sit, and the more you don’t move, the weaker you get. Not to mention how much better you feel when you get out and about.

I’m good for about two days in the house, and then I‘ve got to go somewhere. I don’t care if it’s to Target to go up and down the aisles.

Of course, sometimes you get the stares and the little children saying, “Mommy, what’s that on her nose?” Then I just simply tell them, “Because I can’t breathe, so this gives me air.” I would rather be out and active. I just feel so good after I’ve done it.

If you go to a pulmonary rehab program, they have after-programs where you can go back and see the people again, and talk with them and laugh. It’s so vital to stay active as much as you can.

We have a couple of people in our group who are in wheelchairs. I think, for new people, it’s very hard, when they come into the meeting, and they see people with oxygen and walkers and wheelchairs. And you think, ‘At any point that could be me.’ Because there’s no way of telling how this disease is going to progress. It’s different for everybody.

The best thing to do is to eat well, enjoy your life, try to get some exercise, and try to get good rest, and just not overdo it. And that’s what’s hardest for me.

Some physicians don’t know much about this disease, and they just say, “Three to five years to live, and there are no treatments.” And so you’re thinking, ‘Oh my gosh.’ Or they’ll hand them a flyer from the support group, and say, “Here. Go see these people. They’ll help you.”

It’s very sad that the physicians don’t know enough about this disease and what’s going on with treatments and drugs, and that causes a lot of problems.

It’s important to keep up with your yearly HRCTs—just because your six-minute walk or your pulmonary function test doesn’t show any change, doesn’t mean there haven’t been changes.

Keep up on your doctors’ appointments. Make a list of questions before you go in to see your doctor. I take a small tape recorder in with me, so that I don’t have to take notes, and I don’t have to worry about remembering what the doctor said. You tape it, then you can listen to it again before your next appointment, so you know where to pick with your discussion and any tests you should have had.

Don’t give up. The IPF stands for “I’m prepared to fight.” We’ve had four people in our group who’ve had lung transplants and been successful.

Join a support group, exercise and stay active. Do what you can, and enjoy your life. Enjoy your life, and wait and hope that something comes along.

 

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