Zara Altbach listens to her body. Maybe more often and more carefully than most.
And it’s a good thing that she does, because the mother of twin daughters knew exactly what was happening to her while she sat at her desk and chatted with a colleague at work. A familiar sensation interrupted her: a click, then a shift in her chest.
Her right lung was collapsing — again.
Pneumothorax: An unexplained leak
The collapse was caused by a tiny rupture in Zara’s lung — a rare condition called pneumothorax — that allows air to escape the lung and fill the surrounding chest area, pushing down the lung and forcing it to deflate.
Ms. Altbach’s first pneumothorax happened a year-and-a-half before the incident at work. Thinking her cough and chest pain were symptoms of bronchitis, Ms. Altbach’s doctor was shocked when a chest X-ray revealed a collapsed lung. She was sent to Lenox Hill Hospital, where doctors removed air in her chest through a catheter, then re-expanded her lung and assured her that it was unlikely to happen again.
But now, Ms. Altbach and her physician, Byron Patton, MD, a thoracic surgeon at Lenox Hill Hospital, were faced with the question: why would the lung of a healthy woman deflate not once, but twice? She exercised often and didn’t have the usual risk factors, which include smoking, family history of lung disease and chest injury.
“What made her case unusual is that she came back with another one. That happens less than than 5 percent of the time,” Dr. Patton said.
To prevent another collapse, Dr. Patton performed pleurodesis, a procedure that attaches the lung to the chest wall, keeping it intact even if another rupture occurs.
Running near empty
Recovering from pleurodesis was painful and slow. Ms. Altbach grew anxious and took to checking her oxygen levels with a finger monitor, just in case.
“I wasn’t healing as quickly as I thought I would,” she said. “I was monitoring my breathing, I was very nervous and my panic attacks — I hadn’t had any since my 20s — were coming back.”
A third collapsed lung
On the night of her third major lung collapse Ms. Altbach was sitting in the living room of their weekend home upstate, watching her oxygen fall and struggling to breathe. A visit to the hospital in the morning confirmed her suspicion—she was having yet another pneumothorax. The pleurodesis procedure, to Dr. Patton’s surprise, hadn’t worked.
The two years following the first collapse were blurred by emergency X-rays, early mornings, rushing to the hospital with sleeping toddlers and an oxygen tank in tow. Ms. Altbach had three major lung collapses in that time, as well as dozens of “mini collapses” in between.
She was exhausted and worried. Too out of breath to pick up her daughters, she felt she was missing out on motherhood.
“It stole two years of my life with my kids,” Ms. Altbach said. “I was never present.”
Catamenial pneumothorax: Collapse comes in cycles
Was there any kind of clue, any stand out event that could have spurred all of this trouble? Zara wondered. She considered her pregnancy—conceiving her twin daughters was a long, complicated journey that took several rounds of in vitro fertilization (IVF) and hormone therapy—but there was no known connection between IVF and pneumothorax.
“I started a chart to go back and look,” she said. “Every time I would go to an ER or the urgent care for an X-Ray, it was either around the time that I was ovulating or going through my period.”
She shared this with Dr. Patton, who then offered catamenial pneumothorax as an explanation. A rare, episodic condition in which pneumothorax happens within 72 hours of menstruation, catamenial pneumothorax is typically found on the right side of the body in patients who have endometriosis.
Ms. Altbach wasn’t sure that she had endometriosis—a painful, often debilitating disease associated with subfertility—but she felt like the events of the past two years were sliding into focus.
“I went home and, along with my mom, researched the heck out of catamenial pneumothorax online to try to find everything we could on it,” Ms. Altbach said. “Everything that was talked about hit what I was feeling at the time.”
In America one in 10 women have endometriosis, a disease in which abnormal growth of tissue outside of the uterus causes lesions to form, frequently spreading to different organs. Symptoms include painful periods, painful bowel movements and more.
There is no known cure.
A multidisciplinary approach
The final piece of Ms. Altbach and Dr. Patton’s theory — endometriosis in or near the chest cavity — could be confirmed through a laparoscopic surgery called endometriosis excision surgery.
Armed with new knowledge and a potential diagnosis, Ms. Altbach sought out Tamer Seckin, MD, a leading endometriosis expert and gynecologic surgeon at Lenox Hill. Dr. Patton asked Dr. Seckin to join him in the operating room for Zara’s second pleurodesis procedure the next day.
“Dr. Seckin listened to my story and what was going on with me,” Ms. Altbach said. “He told me he would do his best to make it and he did. He made time at the very last minute to join the surgery with Dr. Patton.”
Dr. Patton and Dr. Seckin operated side-by-side with each investigating a different area of the body. Dr. Seckin went first.
“It was extensive,” he said of the endometrial lesions. “Diagnosis was made at that time, so we knew exactly where those lesions were coming from.”
Within the pelvis Dr. Seckin found lesions on Ms. Altbach’s ovaries, fallopian tubes and uterus, and within the abdomen on the diaphragm. But, whether endometriosis was the cause of her lung collapse was still in question. Dr. Patton picked up from there.
He discovered abnormal lesions on the top half of the diaphragm, which separates the heart and lungs from the abdominal cavity. This confirmed a diagnosis of catamenial pneumothorax.
Dr. Patton removed the lesions and re-attached her lung to the chest wall.
“Traditionally, the surgeries would be done separately because they’re in different body cavities,” Dr. Patton said. “But, since we both operate minimally invasively, it just made sense to do them at the same time. This way patients only have to come into the hospital once. They only have to go through anesthesia once.”
Since teaming up for Ms. Altbach's treatment, Dr. Patton and Dr. Seckin have worked together on multiple catamenial pneumothorax patients – a practice she hopes more doctors adopt.
“It’s a multidisciplinary approach to a multi-organ disease,” Dr. Seckin said. “Zara was the icebreaker. She connected our two departments.”
Return to breath
Ultimately, Ms. Altbach and her doctors decided to remove her uterus in order to cut off the source of the endometriosis. Dr. Patton is confident her lung won’t collapse again from the condition.
Nearly a year since her last surgery, she is healing and returning to her life — a life removed from frequent doctor visits and emergency room trips. She is enjoying motherhood with newfound confidence and looking forward to “life being simple again.”
“I can now start to pick my kids up again,” Ms. Altbach said, her words picking up momentum with each breath. “I can be present, be a wife, be a human being and not just be broken — I was broken.”
“The last six months has been really healing, really trying to take time for myself. I think there was a period of four weeks, five weeks where I didn’t see any doctors and I didn’t think about it, and that was like heaven.”