Just wanted to mention that using a cannula to deliver to oxygen to my lungs has caused my nasal passages to dry out and bleed. I was not initially aware that this would occur but found a moisturizing saline nasal gel called AYR no drip sinus spray. The bleeding stopped and has not returned. There are plenty other moisturizing nasal sprays out there....this was cheap and local! Tell us what you use to help solve your ordinary everyday issues on living with PAP.
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.
1st Annual National PAP Education Day
to be held concurrently with the
2018 Rare Lung Diseases Conference (RLDC)
Marriott Rivercenter
10 W Rivercenter Blvd, Covington, KY 41011
a PAP Foundation & Savara Pharma Sponsored Special Event
Everyone in the PAP Community is Welcome! there is no charge to attend, however, all attendees must RSVP & be a a pulmonary clinician, a registered PAP Patient , or be related/associated to such a person
RLDC Ticket / Credentials are NOT REQUIRED for this Special Event
Saturday, September 8, 2018
1:00 PM –9:00 PM
CONTACT: info@papfoundation.org for information!
My name is Tiffany Roaten, I am 42 and live in Arlington Tx. I was first diagnosed with the flu after feeling sick while cooking Thanksgiving dinner this past November 2017. I was OK when I was sitting, but when I was on my feet it felt as if I was drowning. I was told the 2017 strain of flu was a mean one, so right before Christmas I went to the doctors again, and they took some x-rays and found I had pneumonia, and was put on another dose of antibiotics. Right before NYE I went to the ER because I felt like I could not get a breath. It was confirmed as pneumonia again, and put on my 3rd dose of antibiotics. I read online that pneumonia can take some time to clear, so I tried to break my day down so that I could do normal things like laundry. I went back to the doctor a couple weeks later and was put on my 4th dose of antibiotics. Two weeks later I tried to cut an orange and was unable to. My husband called my primary care, who told me to go get some x-rays and then come to his office. I told him, I could do one or the other, but didn't have the strength to do both. He checked me into the hospital and was there for almost 3 weeks, on IV antibiotics. My oxygen levels stayed at 90 while in my hospital bed, and started getting strange looks from all the hospital staff. I told them several times I was OK sitting but when I walked that's when my O2 levels dropped. So about the 2nd week in ICU they started doing O2 tests without oxygen while walking hospital halls, in less then 60 seconds my O2 dropped to 79, and was rushed back to my hospital bed. Two days later I had a lung biopsy, they took 4 parts of my lung for tests. I was diagnosed with PAP in March 2018. I was referred to Dr. Muhanned Abu-Hijleh at UT Southwestern and had my first whole lung lavage in June, and the 2nd in July. Dr. Abu-Hijleh has had 8 PAP patients in his career, and does at least one to two lung lavage a year. He is an angel in disguise... I can go without oxygen for 4 hours sitting before my 02 drops below 85. I test 6 minute walks daily without oxygen, and drop to 87-88 after the 6 minutes are up. It takes about 20 minutes on oxygen to get my O2 back up in the 90s. I have been on Leukine 250 ml subcutaneous injections daily for the past 30 days, and have not seen any difference, but I am hopeful! I was wondering if anyone had a sharp stabbing pains around the lung area? I don't know how to explain it, but its behind my right shoulder blade, at the tongue of my right lung. I try to swallow yawns, sneezing and coughing can lead to tears, which I also try to hold back. I think I would be able to cope if it were not for this stabbing pain. I had the pain before the lung biopsy. My 3rd and 4th ribs were broken 8 months before I was diagnosed with PAP, from being adjusted at a chiropractor. But I did not feel this stabbing feeling until December when I went to the ER. You are all my heroes, doctors and patients alike. This is my story. Medications I take for PAP: Albuterol - Pill Ipratropium Bromide Albuterol Sulfate GM CSF Leukine injections Montelukast Oxygen 4 liters God's best! Tiffany Roaten
