Kathleen Darrell finds purpose in her life with idiopathic pulmonary hypertension and idiopathic pulmonary fibrosis.
I have idiopathic pulmonary arterial hypertension and idiopathic pulmonary fibrosis. I’ve been told they are running independent of one another, yet simultaneously. We don’t know the cause. I was a very healthy person so this hit me like a Mack-truck.
In 2005 I had a major surgery and 36 hours afterward I got pulmonary edema. The doctors were confused because usually post surgical pulmonary edema shows up immediately after surgery, it doesn’t wait 36 hours. I ended up being in the hospital for an additional week.
A year later, I had to have an emergency appendectomy and the same 36 hours after surgery I got pulmonary edema again. That time I had to be on oxygen for a month. Then, in March 2007 I started with a cough that just wouldn’t go away. It was a dry, hard, nonproductive cough. I was chalking it up to spring allergies, but it wouldn’t go away. That winter I began experiencing shortness of breath, so I asked the doctor that I was going to at the time if those two incidents of pulmonary edema could have caused some damage to my lungs. The doctor said probably not, but he wasn’t quite sure.
In March 2008 I went to see a new doctor. I was explaining my symptoms and he sent me for a pulmonary function test and a chest X-ray. The night of the chest X-ray he called me at home, spent about 45 minutes on the phone with me, and said that the lymph nodes in my lungs appeared to be enlarged. However, he had compared them to previous chest X-rays and they looked about the same, so he wasn’t concerned that it was cancer. He said I failed a pulmonary function test miserably, though, and referred me to a pulmonologist in Albuquerque. I live in Farmington, New Mexico so I had to travel 190 miles. But, I was able to get in very quickly and in September 2008 I started on oxygen full-time.
The pulmonologist repeated the pulmonary function test, echocardiogram and chest X-rays. At that time they weren’t sure if one disease was secondary to the other. My options were to immediately start treating the lung disease or do a lung biopsy to determine the type of lung disease. I opted to have the lung biopsy done in November 2008.
When I went for the biopsy, my husband and I talked to the anesthesiologist before the surgery to tell her about the pulmonary edema I had gotten the two previous times. She told me it was more than likely due to undiagnosed pulmonary hypertension. So, there’s a strong possibility I had the pulmonary hypertension as early as 2005 without it being officially diagnosed.
In December 2008 my pulmonologist was able to tell me that the type of pulmonary fibrosis I have is nonspecific interstitial pneumonitis. It’s a treatable kind. Not curable, but treatable, so they started me on massive doses of steroids.
Three months later the doctor redid the pulmonary function test, the chest X-ray, and the echocardiogram. The pulmonary function test remained stable, the chest X-ray remained unchanged, and the echocardiogram showed my pulmonary pressure was elevated. That’s when it was determined the two diseases were running independently of each other.
I then began treatment for the pulmonary hypertension. I started on minimal medications, but things just kept progressing. When I did my first six-minute walk I was only able to go 134 meters and I had to stop several times. My walks have gotten better since, and although my pulmonary pressures are pretty stable, the right side of my heart is now enlarging to compensate.
I’m a public school teacher. I was a special education teacher for 19 years. As of the last three years I’ve been teaching first grade and getting around the classroom is getting more difficult. I’m progressing to the point where it’s becoming more difficult for me to live a full life. I’m okay when I’m at school because I’ve had all night long to rest up, but by the time I go home I am so wiped out that all I want to do is rest. I don’t really have the motivation or the stamina to get out and do things in the evenings. So, it has changed my life in that respect. My husband and I used to get up every morning, especially in the summertime, and go walk along a river walk path. I can’t do that anymore. It’s a lot of up and down, it’s a lot of uneven terrain, and I have to stop every 10 or 15 yards to catch my breath. It has made those kinds of things difficult.
But, several people have told me that they admire me because they see me going to work everyday, lugging that oxygen tank around, and just doing my job and not complaining. Every time I see somebody they ask if I’m still working, and when I say yes, they’re just in awe. I do it for my students. I show up as many days as I can. There are days that I’m sick, and when I get sick, it knocks me out, but I like being there for my students.
As much as I look forward to the day that I can retire and spend more time with my husband, I’m not looking forward to not being able to make an impact on the lives of these kids I teach every day. I want to help them realize that life is not always a bed of roses, but you can work through the obstacles that have been put in your path and come out successful on the other side.
I credit a lot of my ability to sustain for the last six-and-a-half years, since my diagnosis, to my faith. I have a lot of faith that God has a plan for me, and I’m still here because his plan for me has not come to fruition yet. My husband has been a wonderful support for me, too. My family inspires me. I have seven wonderful stepchildren and 13 beautiful grandchildren. The biggest thing that keeps me going is my family. I want to spend every precious moment with them that I can.
Everyday that I’m still here, there is something that I’m supposed to be doing; even if it is just being an inspiration for someone else, that’s part of God’s plan for me. You never know whom you’re affecting by being around. Smile at someone everyday because you never know, that person might be having a bad day and your smile could change his or her outlook. I just can’t help but think that everyday is a gift. None of us are guaranteed tomorrow and I have no idea who I might come in contact with each day of my life that I will make an impact on in some way.
My advice for newly diagnosed patients is to be proactive in your medical treatment. Do research on your own; write down questions before you go. Take a notebook with you. I keep a three-ring binder of all of my medical reports. Every time I have to go to a new doctor, I take that with me so that they can look at it. I’ve gotten copies of everything…echo reports, lab results, doctors visit notes. I think there are a lot of patients who don’t realize that they can ask for those things.
Also, if you’re starting a new medication, ask why you’re taking it, what are the side effects, what is the purpose, and how long should it take before I expect to see benefits? Make a list of your diagnoses, medications, doses, what it’s for, and surgeries you’ve had. Let everyone know it’s there so that if you are ever in a situation where you can’t communicate effectively someone around will know how to access your information to help emergency responders treat you more effectively.
Take life one day at a time, and don’t worry so much about the future; the future will take care of itself. Take care of yourself. That’s another piece of advice that I have for newly diagnosed patients. Listen to your body. It will tell you what you need, and what you don’t need. And don’t stop. Yes, I take a break, but before I go to work I do at least 15-30 minutes of an exercise routine every morning. When I was first diagnosed, I weighed almost 220 pounds. This morning I stepped on the scales and I weigh 120 pounds. I have lost almost 100 pounds. I didn’t do it by going on fad diets or anything else other than portion control. So, if your doctor encourages you to lose weight, you need to do it. It will make you feel better and it will help with your breathing.
I want people to know that they’re not alone. There are other people out there who are experiencing the same thing you’re experiencing. In my area I know there are other people with pulmonary hypertension. I’ve met a few of them, but there aren’t any support groups organized here in the Four Corners area. I’m hoping that maybe when I retire I might be able to get something started. I know there are support groups in New Mexico, but for me to participate in any of them I would have to travel at least 200 miles to get to one. So, I’d like to network around here to get something started. There are a lot of people out there who think that nobody knows what they’re going through, and that’s not the case. This is a way to reach out and say, if you’re in this area, I’m here too. Let’s get together and talk, even if it’s just to commiserate.
It’s also very important for caretakers to be taken care of. There needs to be support groups not just for the people who are experiencing the illness, but also for the caretakers and family members of the people who are going through it. Even though the illness is afflicting me, it’s not affecting only me. It’s affecting all of the people in my life.
I think it’s important for anyone dealing with a chronic illness to share what’s going on. It can be the next step in what they need to help themselves.