‘I focus on what I still have’

Posted October 30th, 2015 by Be The Match and filed in News
Show Content

Susan_recipient_07-15_117-small (1)How one patient learned to manage chronic GVHD of the lungs

Like many transplant recipients, Susan has had ups and downs since her allogeneic transplant in 2011 for acute myelogenous leukemia (AML). About 5 months after her transplant, she started experiencing chronic graft-versus-host disease, including GVHD of the lungs (also called bronchiolitis obliterans syndrome, or BOS).

Symptoms of GVHD of the lungs

“When the GVHD of my lungs started, it seemed to happen fast but subtly,” Susan says. “I noticed that I had to stop when I was going up the stairs or walking any distance because I was out of breath. It wasn’t painful, but I wondered what was going on, so I contacted my transplant team right away.”

According to Kirsten Williams, M.D., a transplant doctor and expert in lung GVHD, the subtle symptoms Susan experienced are common in patients who have GVHD of the lungs.

“While many allogeneic transplant recipients experience some GVHD, chronic GVHD of the lungs is a rare but serious form,” says Dr. Williams. “It often has no signs or symptoms at first. Along with the symptoms Susan experienced, some patients with GVHD of the lungs may develop a chronic dry cough, a tight feeling in their chest or feeling as if they can’t take full deep breaths in and out.”

“If you notice any of these changes, it is extremely important that you contact your blood and marrow transplant (BMT) team right away,” adds Dr. Williams. “GVHD of the lungs can get worse, and treatment needs to start right away. Often the disease has already significantly affected a patient’s ability to breathe by the time symptoms appear.”

Diagnosis of GVHD of the lungs

GVHD of the lungs happens when the donor cells attack and narrow the small airways (tubes) that carry air throughout your lungs. The best way to diagnose this is with pulmonary (lung) function tests (PFTs)

“Even if patients don’t have symptoms, GVHD experts recommend getting PFTs every 3 months for at least a year after BMT. This can sometimes help us find chronic GVHD of the lungs early, and start treatment quickly,” Dr. Williams says.

Doctors may also do a CT scan of your chest to make sure there is not an infection causing breathing problems.

“Once I was diagnosed, a team approach to my care saved my life. In addition to chronic GVHD of the lungs, I also had pneumonia. My BMT team brought in a pulmonologist (lung doctor) and an infectious disease expert, who continue to be part of my care team today,” Susan says. “I would encourage anyone who has GVHD to make sure that specialists, like an infectious disease doctor, a dermatologist for GVHD of the skin or an ophthalmologist for GVHD of the eyes, are part of their care team.”

Treatment options

Without treatment, GVHD of the lungs leads to permanent symptoms and worsening breathing problems. Since there is no cure for GVHD of the lungs, the goal of treatment is to keep your lungs from getting worse.

“Most patients with GVHD of the lungs stay on some therapies for years or for life. Many of these therapies seem to have few long-term side effects, like inhaled steroids or montelukast which are also used to treat asthma. Researchers are studying combinations of treatments,” Dr. Williams says. “It’s a great idea to ask your doctor about clinical trials (research studies) you may be eligible for. This may offer new treatments for you, and also help us understand which treatments are best for future patients with GVHD of the lungs.”

“I encourage other transplant recipients to take part in clinical trials if you can, and be an advocate for your care,” says Susan. “By doing so, you’re not just being an advocate for you, but for generations of transplant patients who will come after us.”

“Even if you’re not able or interested in joining a clinical trial, ask your doctor about results from recent clinical trials,” says Dr. Williams. “These results may help you and your doctor learn about new treatment options for you.”

Living with GVHD of the lungs

Since she developed GVHD of the lungs, Susan has had to give up some things she used to enjoy, like vigorous exercise. But she says she tries to focus on the positive.

“For me, it’s helped to acknowledge the loss of the things I can’t do anymore, but not dwell on the loss. Instead, I focus on what I still have,” Susan says. “I work with people across the country advocating for GVHD care and care after transplant. I spend time with my family, including my 11 grandchildren. I may not be able to run the bases anymore, but I can hit a ball. And ultimately, I’m still here and that’s what’s important.”

If you’ve been diagnosed with GVHD of the lungs or would like to learn more, download Fast Facts: Chronic GVHD of the Lungs, developed by Be The Match® and the Chronic Graft-versus-Host Disease Consortium. The fact sheet offers information on how to ease symptoms of GVHD of the lungs, how it can be treated and when to call your doctor.

One Response to “‘I focus on what I still have’”

  1. Dennis Hough says:

    Hello, I had an allogeneic transplant from a matched unrelated donor way back in September of 2009 and by July of 2010 I noticed shortness of breath while just stacking dried firewood. IT was BOS for me too. Diagnoses during an inpatient pneumonia event. My morning PA visit that fateful day was to tell me that I had about three years to live a slow decline and to be prepared for a double lung transplant. I really wanted to get my lungs better and tried the inhaled cyclosporine clinical trial at NIH but could not inhale the nebulized vapor without sever coughing. After that I was able to get into a photopheresis protocol a few times per month with a referral to dermatology. That process takes about three hours and suppresses the white T cells that (as you know) can cause GVHD flare ups. I made it out to 5 years before I was totally in need of new lungs and was able to get on the organ transplant list. In April this year, my new lungs went in and I’m doing well. You can find out more about me if you so desire at: http://www.caringbridge.org/visit/dennishough

    Thank you for sharing your story on the Be the Match blog. I never got around to that but maybe I still should. Love Always, Dennis

Leave a Reply