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Summer 2016 - Linda Baum

Linda Baum had it all: a successful career as an optometrist, fabulous shoe collection, great smile and nagging, chronic cough.

Linda Baum had it all: a successful career as an optometrist, fabulous shoe collection, great smile and nagging, chronic cough.

 Linda first learned about the conditions of scleroderma as a student at Barnard College. She took a psychology course and learned about the tri-fold color changes in Raynaud phenomenon. “I thought to myself, ‘That’s me,’” Linda remembered. “I associated it with being small in stature and having a very type-A personality. I didn’t think much more about it.”

 Eventually, Linda realized that she might actually be sick and needed to address her chronic cough. She reached out to a former patient who was a rheumatologist and was diagnosed with bilateral pneumonia. Since this was not her first episode of pneumonia, the rheumatologist suggested she be tested for underlying conditions, including scleroderma.

 “How could this be happening to me?” Linda remembers thinking. “Scleroderma was not a disease I was very familiar with, and it was rare. So I just blew it off.”

 Over the next few years, Linda had several more bouts with pneumonia. She was constantly exposed to all sorts of different microbes because optometry is a face-to-face practice, meaning doctors don’t typically mask up for eye exams. Linda, now in her thirties, faced a big decision.

 “I was considering getting pregnant, and my husband and I knew time was moving on,” said Linda. “It took a bit of coordination of care, but it became evident by that time, with clinical testing, that I had a mixed connective disease and would be classified as a high-risk pregnancy.”

 Despite her diagnosis, Linda gave birth to two beautiful daughters in 1997—one in January and one in December! She went back to her optometry practice part-time basis and continued to march forward. More test results, however, showed major, irreversible lung damage.

 “I remember having this overwhelming feeling. There was not as much information available on scleroderma then as there is now. It was clear that we had to be actively involved in my care and case management.”

 In 2008, Linda had yet another case of pneumonia. She left her office and headed straight to the hospital. When she left the hospital, she didn’t leave alone. Linda was now on oxygen 24/7.

 “I was told to restrict my work and activities. I had young children at home, and I was not about to stop my life,” she said. “So I became an expert on portable oxygen systems. I incorporated oxygen into my lifestyle and was determined that it would not define me. I wore skinny jeans and spiked high-heel boots. I traveled with my family. I drove, flew, boated and enjoyed life. Nothing stopped me.”

 Until she just couldn’t do it anymore. It had become almost impossible for Linda to breathe.

 “My medication was not working for me anymore. My only hope was to get onto a transplant list, which was not an easy decision, particularly with scleroderma. After being rejected by several centers, I turned to University of Pittsburgh Medical Center (UPMC). I was very fortunate to be listed for a transplant in 2012.”

 As Linda’s oxygen demand went up, it was unlikely a transport plane would be able to take her from her home in New Jersey to UPMC.  Linda relocated to Pittsburgh shortly after being placed on the transplant list.  Her family and friends coordinated trips. They were by her side every step of the way. Later that year, Linda was scheduled to receive a double lobar lung transplant on October 29. It looked like the only thing standing in her way now was Mother Nature.  Hurricane Sandy, the deadliest and most destructive hurricane of the 2012 Atlantic hurricane season, hit the Northeast on the same day.

 “A friend of mine was staying with me at the time. She was planning to head home that day but came back to prepare me for the transplant.” remembered Linda. “My husband was trying to get to me from New Jersey and could not because of weather conditions. He did not arrive until after the transplant was underway. It was a crazy time.”

After her transplant, Linda experienced a variety of emotions. She knew this was not a real-life version of the childhood game “Operation.” There were many concerns about her size, the degree of her illness, her recovery and overall health. She dropped to 89 pounds post-transplant. Her fragile body was failing. 

Linda’s family and friends continued to be her support system and arranged to stay with her throughout the post-transplant process, which was not always easy.

 “It was like something out of an exorcist movie,” recalled Linda. “I was throwing up and afraid to breathe on my own. I thought I would suffocate without medical support. I didn’t think my new lungs could work. My veins clogged up, ports jammed and the feeding tube made me nauseous. I couldn’t eat without gagging. I couldn’t see that well or control my hands but I knew how to use a cell phone. My family was none too amused that I was managing my finances and successfully trading stocks.”

 Linda’s stay in the hospital lasted approximately seven weeks. She finally left Pittsburgh because it was time to start living again, not because she felt 100 percent.

“Scleroderma is not for the cowardly. If you were not brave before, you had better get some courage. There is just no giving up. Family and friends can get burned out from dealing with a long-term illness. When your family asks what you did today, never say you did nothing. Living life is not nothing! Breathing on your own, not coughing, having control of your excretion, dancing, sitting at a graduation or hitting milestones — all of that is reason to celebrate.”

 And celebrate she does!

She will not let a double lobar surgery or scleroderma hold her back. She prides herself on being proactive, self-assertive and informed. Linda, a lifelong animal lover, looks forward to traveling with her family and is prepared for whatever adventures life throws her way.

Now, three years after transplant, Linda travels to Pittsburgh biannually to have her antibodies checked. Her recovery has been long. She continues to take roughly twenty pills a day. She fights every day, and she has survived.

 

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