One of my friends was recently diagnosed with PAP and is having a very hard time dealing with the shortness of breath. She has had a biopsy done, no cancer, but she is scheduled to see a pulmonary specialist near her next week. I've been reading about lung lavage and some of the clinical trials. I'm trying to learn as much as I can so I can help her. Should we be looking for a pulmonologist who deals specifically with PAP or is it okay to see any pulmonologist? Having gone through pancreatic cancer with my dad, I learned that the local doctors aren't necessary qualified to offer treatment options. We're about 2 hours away from NIH. Would that be a better option? Does she need a referral to go there? How does that process work? Thanks!
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rottn430
Oct 26, 2017
Newly Diagnosed and Need Help
Newly Diagnosed and Need Help
This is so awesome of you to help your friend. One of the best pieces of advice we received was, don't let anyone touch your daughter who hasn't done a ton of lavages. After having that info confirmed by other PAP patients, we have heeded their advice to the letter. Our daughter is doing great. We've been to Univ. of Colorado, & Cincinnatti Children's Hospital Medical Center. Click on "PAP MAP" at the top of this page for additional treatment centers. Check with her insurance regarding referrals.
You are awesome for helping your friend. Thank you. Stay strong, don't be afraid to ask questions or challenge answers.
Best,
Judith
(mom to daughter dx at 15 yrs old, 4 lavages, on 250mg gmcsf x 3 years - no side effects, lungs mostly clear, stable disease)