Story, April 2021
Posted: April 2021
July 6, 2015 I woke up extremely short of breath, as I made my way to the emergency room each breath became more difficult. I was quickly diagnosed with pneumonia and admitted. After two days in the hospital I was told the pneumonia had “grown” both lungs were now full from a pneumonia that they could not identify. I was put in ICU on high flow oxygen for several days. Fast forward a few months, December 2015 while out with my daughter I randomly coughed up a tiny white stringy thing, I had no clue what it was and just spit it out. Over the next several months this would happen maybe once a week. I finally mentioned it to my doctor and was told that it was the gunk from the bottom of my lungs due to my COPD and I should just continue on with my nebulizer treatments. I accepted that. By 2018 these white stringy things I was coughing up became more frequent and were getting larger, every other month I was in the emergency room for a cough and shortness of breath and each time was diagnosed with pneumonia. By this time I was taking pictures of everything I coughed up and was showing all my doctors, and none of them seemed to know what it was. My dermatologist, who treats my rare skin disease (hidradenitis suppurativa) and my diabetes doctor were both very invested in helping me figure this out. By the middle of 2018 I began jumping from lung doctor to lung doctor trying to find somebody to help me figure things out. I was given so many different nebulizer treatments as well as inhalers. None of those worked. Now I decided to go and see an allergy/asthma specialist, he did some x-rays and noticed ground glass opacities and told me that was not normal and I needed to see a lung doctor. I was so extremely frustrated at this point that I made an appointment with my primary care provider and cried to her and begged her to help, she referred me to the HealthEast lung Center and said there were amazing doctors there and they could help me figure things out. I met with Dr Hamieh in January 2019, just like with my primary provider I cried to him, lucky for me I coughed up one of these stringy things while in his office, The look of shock on his face made me nervous, he said he had once read an article of someone who had a very rare lung condition and he thought maybe that’s what I had. For the first time in three years I felt hope! He set me up to have a bunch of tests done and told me he would get back in touch with me soon. I went home and waited, The few weeks I waited felt like forever. During this time I ended up back in the hospital, all kinds of tests were being done, I literally felt like I was on an episode of house, so many doctors kept coming in to talk to me, some just to see my “cool” cast pictures. They would leave my room and come back 20 minutes later asking permission to do more tests. March 2019 a name was finally put to what I had, plastic bronchitis. Dr Hamieh told me that he had an email circulating around the University of Minnesota trying to find a Doctor Who Felt they could help me. Dr. Flanagan accepted me as a patient and immediately began preparing to do a lymphatic embolization. I had done my research and I knew the best place for me was Philadelphia but when you are with limited funds you have tough decisions to make and I decided to let Dr. Flanagan do my procedure here in Minnesota. The day came and I was so excited! It was June 18th, 2019, I checked into the hospital so excited to feel better just to wake up several hours later to be told that they were unsuccessful. I was devastated. I spent the next few months trying to figure things out, how was I going to get to Philadelphia? By January 2020 things had gotten very bad, I barely got off of my couch because just walking 20 feet to the bathroom my oxygen dropped into the 70s. I was on five units of oxygen at home and struggling greatly, I cried A LOT! Even following a no fat diet it seemed like I would clear my airways by coughing out a large cast but there was always another one needing to get out. By this time I was in contact with the team in Philadelphia and in July 2020 with the help of a couple of friends and the plastic bronchitis foundation my daughter and I traveled during a pandemic for me to receive treatment in Philadelphia Pennsylvania! I had lost all hope and I was scared to death! Dr Itkin saved me and gave me my life back! Today I am free of plastic bronchitis!