Hey guys, I'm a 24 year old from Australia, was diagnosed with Pulmonary Alveolar Proteinosis (autoimmune) at the end of last year, been experiencing the symptoms for about a year. I've already gone through the biopsy and my first complete lung lavage of both sides. Because of the illness I've left my job due to stress and fatigue and now need to find a new career path that's more suiting. Been searching around the internet for a while now to see if there's a place where others in my shoes are having an open discussion and talking about dealing with everyday life, and due to how rare this is, it seems like there's almost no one out there. Wanting to know what success others have had with ongoing lung lavages, oxygen therapy, and GM-CSF spray, and even physiotherapy or finding a right diet (anything that makes a little difference) has it made life easier? At the moment I'm not the clinical trial yet and not on oxygen therapy, although I always feel great on oxygen/just coming out of hospital after the lavage. Wanting to hear from anyone with how they've coped and if there's any other forums/communities where people regularly talk about this.
Jun 4, 2019
Around June and July of 2017, I started to feel shortness of breath. So, I decided to go to my primary Dr. in August and told her about my symptoms. For some reason I thought that maybe I got pneumonia again. I suffered the same symptoms in 2015 and I was diagnosed with pneumonia. They prescribed me antibiotics and when I was done with the medication, my symptoms went away. This time the x-rays showed pneumonia once again. I was prescribed antibiotics and when I finished, my symptoms were still there. My primary Dr. referred me to see a pulmonary specialist. During this time September 2017, I was in a process of changing insurance through my work, so I couldn’t go as soon as I wanted too. I could finally see a pulmonary Dr. on October 16th 2017 with my new insurance. I explained what I was going through. My oxygen levels were not good at the time of my appointment. At rest I was on the low 80’s. He then told me I couldn’t continue working under those conditions, so he prescribed me supplemental oxygen and I was put off work right away. He then ordered x-rays and a CT-scan to be done. When he saw the results, he told me he suspected I had PAP. On the CT-scan it showed the crazy paving related with PAP. After this I had a lung biopsy on November 9th 2017 and I was finally diagnosed with PAP. Then I had my first set of whole lung lavage on December 11th of 2017 and January 5th of 2018. After the whole lung lavage, I didn’t feel any improvement. The Dr. then decided to send my blood for testing and send it to Cincinnati Children’s Hospital to find out what type of PAP I had, which was primary PAP. He also decided to prescribed me the Leukine for inhalation. During this time of February and March of 2018, I was having issues with which pharmacy was going to provide me the medication. While waiting for the medication to be delivered, my condition got worse. I lost my appetite and suffered weight loss. I didn’t have the energy to do something simple as getting off bed, going to the restroom, brushing my teeth, or walking around the house was an everyday struggle. Getting a bath or getting dressed by myself was something I couldn’t do anymore. I needed my mom’s assistance for almost everything. The constant cough got worse and exhausting. I came to the point of not being able to sleep laying down. I was doing 5 liters during this time, but I felt I needed more than that. Then the medication finally came on the March 27th 2018. During early morning of March 28th 2018, my every day cough kept me awake and while trying to get some sleep, I suddenly felt chest pain and was having trouble breathing. I went to emergency and was treated for a pneumothorax or lung collapse. I stayed for a week under high flow oxygen and the lung collapse was not getting any better. For some reason I got my appetite back and I was craving for food again. I also started the Leukine inhalation at the hospital too. The Dr. said that my only treatment option for my PAP was a lung transplant. When I was told this, a lot of stuff went through my mind, I just couldn’t believe it. Since I was diagnosed with PAP, I was still trying cope with the fact that the disease is a rare one and that the medication might help. Not so sure myself I agreed and the Dr. transferred me to UCLA hospital on April 4th 2018. During my stay at UCLA, I had the opportunity to meet Dr. Tisha Wang. Still under high flow oxygen, she guided me through my recuperation and another whole lung lavage was done. Little by little my lung collapse healed and also my need of oxygen was reduced to regular flow. I was finally discharged from UCLA hospital on April 19th 2018. I was happy to finally go home, still weak and under oxygen, but with the ability to breath much better than before was something I was very thankful. When I was at the hospital I was invited to the PAP Education day at UCLA. I decided to go with my mom and my sister. It was a nice experience to meet people with the same problem as me. We were able to hear interesting stories and struggles of what involves PAP. I felt more hope when I saw the PAP patients without supplemental oxygen. I was the only one with supplemental oxygen. The information that was provided regarding PAP was also helpful, it gave me another perspective of this disease. Also, during the meeting, I met a parent of PAP patient. We shared our stories and it so happened that her daughter was still at the UCLA hospital. We asked him if could go and visit her daughter and he agreed. So, after the meeting we went and we met each other. She was still weak, but she was willing to listen and ask some questions, so we shared some our struggles. Her parents were also happy and thankful to see that I was able to visit them. I was also thankful to have the opportunity to meet her. So far, we’ve in contact through e-mail. As a PAP patient, I had another set of whole lung lavage on May 25th and September 4th 2018 and still inhaling the medication. For my oxygen intake I do 2 to 4 liters. I can tolerate more movement than before, but the shortness of breath still there. I know this is going to be a long journey, but I will trust in God. I am glad that due to the circumstances I was able to meet Dr. Tisha Wang and that there are more people studying this disease and trying to find more treatment options. I know that someday I will be off oxygen. When will that be, I still don’t know. But I have faith that God will guide me until we reach that goal. Thank you very much for giving me the opportunity to share my PAP story.