Hi! I wanted to get to know people with PAP. I have friends with other illnesses but, with how rare PAP is, I don't know anyone who really understands exactly what living with PAP is like. I wanted to start by introducing myself.
HI! I'm Faith and i'm 23 years old and I was diagnosed with PAP just over a year ago. I got lucky and was diagnosed just 6 months after beginning to show symptoms. I was an archaeology major in college and it's currently believed that I inhaled something while on a dig that triggered the autoimmune PAP. So, obviously I had to slightly tweak my career plans. Now i'm a masters student in cultural anthropology. No more dirt for me.
At current, i've had 8 lung lavages and have struggled with the treatment. I had a rare side effect to the inhaled leukine which ended up causing more harm than good so i'm back to trying to get the injections to work. If it doesn't work I will need to explore more aggressive forms of treatment.
Also I like Disney, bad Sci-Fi movies, and all of the carbs I shouldn't be eating.
Who are you?
1
clanpark
Feb 9, 2018
Dear Faith,
Hope you are doing well. Sorry for the delayed response. I missed it before. I'm a PAP survivor! I had 44 lung lavages from 2002 to 2006. I was on oxygen 24/7 for over 4 years. High dose injections (1300mcg) followed by low dose (250mcg twice a day) inhalations got my PAP in check. I'm 60 now and fully enjoying life.
We do have something in common - dirt! I retired as the Regional Soil Scientist for the Southern Rocky Mountain Region in 2012. I mapped almost 2 million acres of soil in AK, CO, NM, TX, UT, and WY during my 35 year career. That was a lot of hole digging and sucking down dust! I also participated in archeologic digs in NM and Peru. When I was first diagnosed I also thought it was something I inhaled from dust. My first thought was Valley Fever spores. But ,that was negative. My PAP was triggered by a respiratory infection my wife brought home from the sick preschoolers she works with.
A recent study by Savara Pharmaceuticals show that healthy, non-PAP, people can inhale up to 600 mcg daily with no adverse side effects. However, my high dose daily injections of 1300mcg caused a very high hypertension problem and I had to stop them. However, they did rapidly start clearing at the lungs. Currently, I inhale 500 mcg daily to keep my PAP in check.
I live in Lakewood, Colorado and enjoy golf and the great outdoors! And Sci-Fy movies!
Please feel free to contact me at my private email clanpark@comcast.net if you would like to talk more about PAP outside the forum.
Take Care!
Steve Park - VP for Development, PAP Foundation
Judith Sumner
Feb 10, 2018 · Edited: Nov 18, 2018
Hi Faith!
I love that you posted this "let's get to know one another" topic! We have a 19 yo daughter with PAP, diagnosed in 2014. She tried to reply to your post but had difficulty logging in...in the meantime I just wanted to tell you a little bit about her until she has time to respond (she is insanely busy). She is a freshman in college, studying bio-engineering and playing Division 1 golf. Yes, I love sports but I do worry about her doing too much. Ok, I'm a mom! LOL But we are not going to hold her back, all the same.
She loves Riverdale, Harry Potter, music and other fun stuff. We live close to Disneyland, so if you ever come this way.... LOVE your bad-sci fi movie comment. Have you ever seen Mystery Science Theatre 3k? So fun! Feel free to contact us anytime: judiths@papfoundation.org if we can help you. BTW she has been on inhaled Leukine for 3 years with no known side effects and doing remarkably well. Take care of yourself!
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Please save the date for our next Patient Education Day: Sept. 30, 2019 in Yale University, in New Haven, CT. Details to follow. We hope you will attend. Physicians, patients, family members, and caregivers are all invited to attend.
Current updates on all things PAP will be covered, as well as opportunities for each family to ask questions of our PAP experts.
Howdy PAP Family, Once again I am hosting the 3rd Annual Golfing for a Cure Golf Tournament on June 29th, in Littleton, Colorado. If you are interested please take a look at our upcoming events on our home page or contact me, Steve Park. You may also make a donation to honor a family member of friend who is struggling with PAP. All sponsors/donors will be recognized in the program and at the luncheon after play. PAP patients are also invited to the luncheon where you can meet other PAP patients and doctors. Thanks for Your Support! Steve Park - PAP Survivor and 2nd VP PAP Foundation
Dear Faith,
Hope you are doing well. Sorry for the delayed response. I missed it before. I'm a PAP survivor! I had 44 lung lavages from 2002 to 2006. I was on oxygen 24/7 for over 4 years. High dose injections (1300mcg) followed by low dose (250mcg twice a day) inhalations got my PAP in check. I'm 60 now and fully enjoying life.
We do have something in common - dirt! I retired as the Regional Soil Scientist for the Southern Rocky Mountain Region in 2012. I mapped almost 2 million acres of soil in AK, CO, NM, TX, UT, and WY during my 35 year career. That was a lot of hole digging and sucking down dust! I also participated in archeologic digs in NM and Peru. When I was first diagnosed I also thought it was something I inhaled from dust. My first thought was Valley Fever spores. But ,that was negative. My PAP was triggered by a respiratory infection my wife brought home from the sick preschoolers she works with.
A recent study by Savara Pharmaceuticals show that healthy, non-PAP, people can inhale up to 600 mcg daily with no adverse side effects. However, my high dose daily injections of 1300mcg caused a very high hypertension problem and I had to stop them. However, they did rapidly start clearing at the lungs. Currently, I inhale 500 mcg daily to keep my PAP in check.
I live in Lakewood, Colorado and enjoy golf and the great outdoors! And Sci-Fy movies!
Please feel free to contact me at my private email clanpark@comcast.net if you would like to talk more about PAP outside the forum.
Take Care!
Steve Park - VP for Development, PAP Foundation
Hi Faith!
I love that you posted this "let's get to know one another" topic! We have a 19 yo daughter with PAP, diagnosed in 2014. She tried to reply to your post but had difficulty logging in...in the meantime I just wanted to tell you a little bit about her until she has time to respond (she is insanely busy). She is a freshman in college, studying bio-engineering and playing Division 1 golf. Yes, I love sports but I do worry about her doing too much. Ok, I'm a mom! LOL But we are not going to hold her back, all the same.
She loves Riverdale, Harry Potter, music and other fun stuff. We live close to Disneyland, so if you ever come this way.... LOVE your bad-sci fi movie comment. Have you ever seen Mystery Science Theatre 3k? So fun! Feel free to contact us anytime: judiths@papfoundation.org if we can help you. BTW she has been on inhaled Leukine for 3 years with no known side effects and doing remarkably well. Take care of yourself!