Rare lung disease opens a new chapter for couple on the move
Posted: August 30, 2018 | Word Count: 1,279
Jeanie Stich and her husband Elfie have constantly been on the move throughout their 32 years of marriage. In 1999, after 20 plus years of working together at a major aircraft company, the two retired, put their home in Washington state up for sale and set off to explore the country in their new RV. Thirteen adventure-filled years on the road later, the couple settled at a retirement resort in Arizona and filled their days socializing with friends and playing cards. Jeanie even picked up the sport of pickleball.
All was just as the couple had planned and imagined, until – toward the end of 2015 – Jeanie developed a dry cough that she couldn’t shake and began becoming noticeably more tired from typical activity than usual. Jeanie and Elfie feared something was very wrong and, unfortunately, their instincts were correct.
Jeanie’s symptoms persisted for about a month, at which point she went to see her doctor. She was diagnosed with bronchitis and prescribed antibiotics, but the medication didn’t help. By February, walking even small distances was too much, and Jeanie was spending her days in bed or a chair. She went back to the doctor and, this time, was diagnosed with pneumonia. Her doctor prescribed another course of antibiotics, and again the medication didn’t help.
Finally, Jeanie was referred to a lung specialist, or pulmonologist. After a handful of tests, Jeanie and Elfie finally learned what was really wrong – Jeanie had idiopathic pulmonary fibrosis, or IPF, a rare lung disease that causes permanent scarring of the lungs. As the pulmonologist explained, IPF affects up to 132,000 Americans and a proper diagnosis can take years, as the symptoms of IPF, including breathlessness and a dry persistent cough, are similar to other more common and recognizable lung diseases like COPD and asthma.
Jeanie was distraught – particularly since the doctor informed her that the disease had progressed too far for treatment and that she should get her affairs in order. “Elfie and I spent that weekend praying, crying and trying to figure out what had just happened to our perfect life,” remembers Jeanie. “I was devastated by the thought of no longer sharing a life with my husband, my kids, and my seven grandkids. But I looked at Elfie and said ‘these are the cards we’ve been dealt, we’re going to play ‘em. We’re going to get through this.’”
Elfie was also overwhelmed and, understandably, frightened that he might lose his best friend and love of his life. Still, he was determined to stay strong and help Jeanie battle this bleak prognosis. As a first step in their fight, he and Jeanie decided to seek a second opinion from a critical care pulmonary specialist. This new doctor confirmed Jeanie’s IPF diagnosis, but much to the couple’s delight he explained that there were treatment options available – and that she may even become strong enough for a lung transplant down the road. “We cried tears of joy,” said Elfie. “This doctor had given us hope that we could do something. We had options.”
In March of 2016, Jeanie began taking Ofev® (nintedanib) capsules, a treatment that the critical care pulmonary specialist explained might help slow the progression of her disease by decreasing the decline in lung function.
Today, Jeanie continues to make strides and has learned to embrace a new way of living – less active than at the peak of her pickleball-playing days, but nonetheless she leads a full life. She has started to incorporate slow walks and time in the resort’s pool into her weekly fitness routine – and the couple is looking forward to getting back on the road with an upcoming trip to their beloved home state of Washington.
“Do I wish I could still play pickleball? You bet I do. Do I dwell on it? No. Life presents you with roadblocks; my husband and I call them ‘new chapters.’ In this new chapter, I’m thankful I can do the things that I can,” Jeanie shares. “I don’t know if it’s the love around me, my positive attitude, or my will to beat this disease, but I hold onto hope. No matter how bad it looks or how bleak the day is, I never give up hope.”
To learn more about Ofev® visit www.Ofev.com.
What is Ofev?
Ofev is a prescription medicine used to treat people with a lung disease called idiopathic pulmonary fibrosis (IPF). It is not known if Ofev is safe and effective in children.
Important Safety Information
What is the most important information I should know about Ofev® (nintedanib)?
Ofev can cause harm, birth defects or death to an unborn baby. Women should not become pregnant while taking Ofev. Women who are able to become pregnant should have a pregnancy test before starting treatment and should use birth control during and for at least 3 months after your last dose. If you become pregnant while taking Ofev, tell your doctor right away.
What should I tell my doctor before using Ofev?
Before you take Ofev, tell your doctor if you have:
- liver problems
- heart problems
- a history of blood clots
- a bleeding problem or a family history of a bleeding problem
- had recent surgery in your stomach (abdominal) area
- any other medical conditions.
Tell your doctor if you:
- are pregnant or plan to become pregnant.
- are breastfeeding or plan to breastfeed. It is not known if Ofev passes into your breast milk. You should not breastfeed while taking Ofev.
- are a smoker. You should stop smoking prior to taking Ofev and avoid smoking during treatment.
Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, herbal supplements such as St. John’s wort.
What are the possible side effects of Ofev?
Ofev may cause serious side effects.
TELL YOUR DOCTOR RIGHT AWAY if you are experiencing any side effects, including:
- Liver problems. Unexplained symptoms may include yellowing of your skin or the white part of your eyes (jaundice), dark or brown (tea colored) urine, pain on the upper right side of your stomach area (abdomen), bleeding or bruising more easily than normal, feeling tired, or loss of appetite. Your doctor will do blood tests regularly to check how well your liver is working during your treatment with Ofev.
- Diarrhea, nausea, and vomiting. Your doctor may recommend that you drink fluids or take medicine to treat these side effects. Tell your doctor if you have these symptoms, if they do not go away, or get worse and if you are taking over-the-counter laxatives, stool softeners, and other medicines or dietary supplements.
- Heart attack. Symptoms of a heart problem may include chest pain or pressure, pain in your arms, back, neck or jaw, or shortness of breath.
- Stroke. Symptoms of a stroke may include numbness or weakness on 1 side of your body, trouble talking, headache, or dizziness.
- Bleeding problems. Ofev may increase your chances of having bleeding problems. Tell your doctor if you have unusual bleeding, bruising, or wounds that do not heal and/or if you are taking a blood thinner, including prescription blood thinners and over-the-counter aspirin.
- Tear in your stomach or intestinal wall (perforation). Ofev may increase your chances of having a tear in your stomach or intestinal wall. Tell your doctor if you have pain or swelling in your stomach area.
The most common side effects of Ofev are diarrhea, nausea, stomach pain, vomiting, liver problems, decreased appetite, headache, weight loss, and high blood pressure.
These are not all the possible side effects of Ofev. For more information, ask your doctor or pharmacist. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit https://www.fda.gov/Safety/MedWatch/default.htm or call 1-800-FDA-1088.
For full prescribing Information, including Patient Information, visit Ofev.com or contact Boehringer Ingelheim Pharmaceuticals at 1-800-542-6257.