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Meet Paula!

Ever since I can remember, I have had issues with breathing. My Mother always said I had a winter cough. Every cold would go into my chest and I often wheezed. I was never tested for asthma or anything like that, my Mom just used a vaporizer. {I thought} it was just the way I was and I lived with it.

In 2007, I went on a trip to Florida. When I came home, I got a bad upper respiratory infection. My breathing got much worse even after I was “better”. I was left with a horrible cough. I went to a couple of doctors and they couldn’t tell me why I was coughing. As time went on, my breathing was worse and I was getting more infections. I was ending up in the ER and they were telling me nothing was wrong. My oxygen levels were fine and lungs sounded clear.

Finally, they admitted me and I asked to see a pulmonologist. He ordered a bunch of tests and all came back normal. He started me on some inhalers and increased my prednisone. I was already on prednisone for an autoimmune disease which caused me to have hives all over. These helped slightly, but did not give me the relief I needed to lead a normal life. He did have me tested for asthma and found that I did have that, but those meds were not giving me relief. As I was overweight from the steroids, he told me I was out of shape. At that point, I was going to a workout place three days a week. The other days I needed to recover. People would come up to me and ask if I was okay. An ICU nurse told me once that she had patients who sounded better than I did. The doctor was frustrated and the last day I saw him and told him I was still struggling, he said, “Look, I have patients with real problems.”

In the next several years, I went from doctor to doctor in all different specialities. I kept getting infections and my breathing got worse and worse. No one seemed concerned except my husband and I. All the doctors said ,"The tests were normal, lose weight, it’s anxiety or in your head."

In 2016 my PCP said there was a new pulmonologist she wanted me to see. I wrote out all I had been through, meds I was on and asked if he would stick with me to find out what was wrong. After doing all the tests over again, he said he wanted to do a bronchoscopy. That was a first. I freaked out because he did it with very light sedation, but I made it and I got an answer. He thought it was tracheobronchomalacia. What?! He sent me for a dynamic CT scan that showed 99-100% collapse of my trachea and my left and right main stem bronchi. He sent me to an interventional pulmonologist who set up a visit with the top doctor about a stent trial. Finally, I was going to get some answers.

This doctor was in a very large city hospital. By the time I made it through the building, I was gasping and had that funny thumping I got when I was breathing too hard. He came in the room with a medical student and we talked quite amicably. He said that thumping was my trachea collapsing and he could feel it. He talked about doing a bronchoscopy, but never mentioned a stent trial. I did warn him that I freak out when I have to be awake, but that I would cooperate. It didn’t dawn on me until after that he never mentioned a stent trial. I wrote him on the portal asking if he was going to do a stent trial and got no answer.

The day of the bronchoscopy, I was upset and crying. I told the nurse I had a question for the doctor. All the nurses kept putting me off until one finally got him just before the procedure. He came in crossed his arms and asked if I saw a psychiatrist. I answered no and he said I should. He never answered my question about a stent trial. He did the bronchoscopy and when they took me out, he had already talked to my husband. My husband said he didn’t give him a chance to ask questions and never talked about what he found. He repeated that I needed a psychiatrist, gave him the name of one and walked out. Two months later, I got to see his report which stated that, in his opinion, I collapsed only 85% and that was normal. His recommendation was intensive psychiatric therapy.

I went back to the pulmonologist and asked what I should do. When he diagnosed me, he mentioned that he knew of a hospital in Boston that used to treat TBM. I asked if I should go there. He said not to waste my time or money he didn’t think they would see me. I went to another doctor in the city at a different hospital. He had written a paper on TBM. Turned out he was friends with the rude doctor and brushed me off. At that point, I was at an all time low and thought maybe I was indeed crazy. My family and doctor suggested I see a therapist. The therapist told me I was not crazy and gave me ways to cope. In the beginning of 2017, I found a TV news clip on the internet about this woman named Jennifer Champy who was helped with TBM at Beth Israel Deaconess Medical Center in Boston. She had started a foundation, CureTBM, to help people with TBM. At this point, it was difficult to walk from room to room and my husband got me a scooter to go outside anywhere. I called and this amazing woman told me how wonderful this place and people were and to send my records. I thought, "Sure they are. I’ve heard that before! "I thought about it for a couple months. F rom all I could find out, this was my last chance for help. Could I take being turned down or treated rudely again? What if they said I needed this big surgery, could I do that? I freak out for a bronchoscopy! I finally made up my mind that I would send my records and whatever they suggested, I would do. Even the surgery had to be better than not breathing.

After reviewing my records, BIDMC said I was a candidate to be evaluated and we set up an appointment for the end of October, 2017. Jennifer did not lie, they were wonderful. They understood everything! I didn’t have to explain how it felt, they knew. I was able to make it through the bronchoscopy without crying, but I did hear Dr. Parikh keep saying, “Severe, severe, severe.” When I woke up, I had a stent in. I could breathe! What a feeling! I walked my poor husband all over Boston with the stent that week. When they removed it, I went back to not breathing, bummer, but Dr. Parikh felt surgery would help me. Then I met with Dr. Wilson, my surgeon. She went over everything about the surgery and even called me later from her kitchen to go over more questions. Dr. Wilson and Dr. Parikh are fabulous.

I had a tracheobronchoplasty on April 10, 2018. When they took me into the OR I said to myself, "Paula, this is the first day of the rest of your life." Eleven hours later I woke up in the ICU. It was weird, everything was so quiet. T hen I realized it was me. My breathing was so quiet! My husband even commented when he came in. The next afternoon I was out of ICU and on a floor where the work of recovery began. In five days, I was discharged to a local hotel for two weeks and then we did the two day drive home.

I still have a cough from asthma, but my breathing is amazing compared to what it had been. I thank my family and friends for believing me all those years and the amazing team at BIDMC. I especially thank my husband, Tom, who at one point told me we would go to the ends of the earth if it would help me breathe. Luckily, it was just to Boston.

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