Elexa was a nationally recognized and ranked athlete before her diagnosis.

She began having trouble with breathing around age 12, but never let that stop her from doing the absolute best she possibly could on and off the field. For years doctors thought she was faking her symptoms and she was severely mistreated by the medical community. Around the age of 18 was the first time her illness was taken seriously. There were many many diagnoses thrown around, but none seemed to cover every symptom or fit just right.

For the next three years she was in the hospital for numerous lung infections, over 10 incidents of a collapsed lung, surgeries, and tests, sometimes spending three months inpatient at a time. A lung biopsy was finally taken and a diagnosis of interstitial lung disease was given, but it turned out to be the wrong interstitial lung disease. The experts who were consulted for the biopsy never got it and miscommunication caused further delay in finding a correct diagnosis.

After traveling over 1000 miles from Norfolk, VA to Cincinnati Children’s Hospital to see a specialist, bronchiolitis obliterans was finally mentioned. A second wedge biopsy of the lung was necessary for definitive diagnosis, but that was too dangerous unless another surgery was already taking place. It took another few months before the opportunity for biopsy arose and a few months after that the final diagnosis was confirmed. Bronchiolitis obliterans was the disease that had been scarring Elexa’s lungs for years, and the time it took to diagnose severely cut down on the treatment options. At the time of diagnosis her lung function had reached a low of 28%. Many treatments were attempted, but the only one that has helped has been a type of chemotherapy called cytoxan. Cytoxan was a last attempt at finding a treatment and remains the only medication that has made a significant impact other than long-term steroids.

Right now, Elexa continues her treatments, has inpatient stays every couple months, treats the other diseases that have come up as a result of side effects (diabetes, osteoporosis, ptsd), and tries to remain positive. She misses playing sports and wishes her body were strong enough to do everything she used to, but works hard at staying as healthy as possible. She likes to help people learn about advocating for themselves in a medical setting and raising awareness for children’s interstitial lung diseases and rare diseases.

3 thoughts on “Just Breathe: Athlete Faces Rare Bronchiolitis Obliterans”

  1. So, my names Rich. I was a start athlete in high school, probably played everything except badminton and hockey to say the least. I was even in dance and my high school’s acclaimed SMW Squad lol. But my main sports were track, basketball and then football. I feel in love with football, I guess you can say, it just didn’t love me back. During a heated battle I was unfortunalty ear-holed & undercut at the same time. It was a severe blow and I ended up disloacting my right ankle and partially to my knee, that was as a result of the undercut. Also in more related terms, i was ear-holed pretty bad on my left and ended up in a football player-shaped pretcil lol *funny/not-funny*. Anyways, as a result I attained a partically punctured lung and a subsequent lung infection that was not properly treated nor cared for on my part (after high school adults parties & scenes if you catch my drift). I was essentially out for 7-9 months recovering and ended up babying my right side because I was harder to walk and stay stable then it was difficult to breathe. This cause my lung to become overly compressed on that side from staying away from my right leg. Now my lung deflates slower due to the puncture (lack of pressure) but I also develop what is said to be popcorn lung; a rare lung desease that is irronically causes your lung to make a poping or bubbling sound, but was actually derived from the popcorn plant I believe. It typically come from vaping excessively. The active ingredient dyasetal causes this but also can be agitated more with other type of inhalation or foreign substances and foods to say the least.

    Now 7 years later I don’t breathe the same and I can feel my bronciles tighening and becoming congested for longer than usual. The most unsettling part about it, is that it causes severe halitosis that I can’t get away from; even eating some type of food give off strange odours. I feel like it is somewhat irreversible, but for the most part I think I may need to seek treatment for Bronchiolitis obliterans because I refuse to fear my later years when my body is in worse shape. I used to work out pretty regularly some months ago, things had slowed down, but even when I was training after the injuring, I tended to stay away from cardio because over excerting my breathing was painful and uncomfortable at times. I hope things will get better, but first thing will be taking better care of myself to see where I stand in better shape with this condition.

    Hope I touched someone going through a similar ordeal. Going from a feild animal to a limping can’t-breathe-right may cause stess, anxiety and even depression if you let it. Your not alone. Peace, Love & Good Luck on your journey.

  2. Pamela Harris says:

    Hello, my name is Pam I’m 58 years old. I was diagnosed with Bronchiolitis Obliterans and bronchial ectasis.
    I was not a smoker or drinker. I never worked in a popcorn factory or any Factory for that matter. I did clean houses off and on throughout my life. So maybe the cleaning chemicals did something to my lungs to destroy them. I was diagnosed and 2016 with a CAT scan and a lung biopsy.
    I am a wife, Mother of 3 and grandmother of 6 and great-grandmother of 3. My lung capacity is at about 46% bilaterally. But when it’s humid out. I find it very hard to breathe. Even staying indoors. I don’t know if it’s from coughing so much but I also have severe muscle spasms all in my stomach and back. I am on one medication called azithromycin antibiotic 3 days a week I take them Monday Wednesday and Friday. So far the doctor and I have agreed that being on steroids on a regular basis would not be good for me. But as of lately I’ve been staying pretty congested off and on. I’ve had the 6-minute walk test I’ve had the pulmonary function test they say nothing’s changed. However I was told that if I continue to have the congestion like this I may have to go on steroids on a regular basis. When I talk to the doctor about lung transplant he said I’m not bad enough yet there is no certain number though so when a person could possibly need one. My fear is that I’m waiting until I’m too weak to have it. I was told that sometimes people can have a very low lung capacity number and not have a problem with breathing that badly. And some people with have a higher lung capacity number, can struggle breathing. In the beginning I went to two different pulmonologist who told me that I had asthma, my family doctor felt that it was more and ordered a CAT scan which is how they found the bronchial ectasis. Then I went to see a lung doctor after U of M Hospital and he suggested the lung biopsy because he thought something else was going on too. I think if I had not gone to him and put on oxygen and if I had to keep struggling the way that I was. I could possibly not be here today. Now I’m on oxygen Around the Clock. I stay very tired most of the time. But even when I do feel like getting up and doing something I have to turn my oxygen up or I start having problems breathing and also when I want to get up and do things like go for a long walk or vacuum or mop. I have to put my oxygen on 3 or 4 per Dr. orders other wise I get to winded. He told me he’d rather see me on oxygen at the lung capacity that I’m at. Than have my lungs get worse and have to have lung transplant. I did meet someone online that pretty much has a lot of the same health issues that I have. And I find it amazing that one of us follows the other ones patterns for being in and out of the hospital for things that are not even related to our lungs. So I guess my question would be does this disease cause other health issues. She has had a lung transplant and is doing fine in that area but she went down to 17% lung capacity before they set her up for a transplant. I’m hoping to stay strong and not let all of the health issues get me down. But knowing that I’m so limited I’m so many things now it does sometimes get me down. Good luck to anyone that’s reading this that has this nasty disease I wish everyone the best. Stay Strong!! Don’t give up Just Breath.

  3. I have the same condition. My UofM doctor will not give me oxygen and I would like to have it. I am currently stable but very limited to activity. Vacuuming is not part of my routine but I just say no to it. Who is your dr. at UofM? Hope you have a good day. I too went for a consult for a transplant and they said “not bad enough”. So I’m concerned that I will not get there. Anyway thank you for sharing.

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