My name is Lana Wadley and I was diagnosed with PAP in 2014 a few months after my mom passed with Pancreatic Cancer. It’s funny, that some people have told me they have gotten ill after their parent died. I don’t know exactly how I got this. I’m thinking it’s either from working in an office building for a couple of years with carbon monoxide poisoning, or when I tried to remove melted aluminum from the bottom of my oven. I’m guessing it’s the latter.
Around 2011, I had put aluminum on the bottom of the oven to prevent spillage from a pie I was baking. To my astonishment, the aluminum completely melted to the bottom. I tried cleaning and scraping to get it off and nothing worked. So, I bought oven cleaner, turned on the oven heat. When I opened the oven door, a mass of fumes came out and went into my lungs. I remember I couldn’t breathe for several seconds, then I coughed and coughed and coughed. The coughing was so hard and painful.
I’m on oxygen 24/7 and have had 6 lavages. I really didn’t see any improvement with these lavages, and with this barbaric method used, I decided not to have more lavages (unless of course I really need to have it done), and hope I could get on the Leukine Clinical trials. Has anyone had a similar story?
Hi Lana I was diagnosed with PAP this March. I cleaned my oven 3 months before I got pap, and also breathed in a dusty fume when the "Clean Oven" mode completed. I had a scratchy throat for a couple of days. There was no melted aluminum but years of pies and who knows what else that became one with the oven. I too had worked in offices all my life, so I was not sure what to make of this lung disease, so many things ran through my mind. I had my first lavage in June, and my 2nd in July. I was OK with the process but have had a stabbing pain in my right lung, and feels like hell after a wash. I am on oxygen 24/7, and just going to the bathroom my oxygen drops into the 80's on level 4 oxygen. Life is very different for me now. There was no change after the lavage either, but God always has the answer before we do. God bless you sister, and if there is anything I can do we are in this together!
Tiffany Roaten
Hi Tiffany, Interesting that we have similarities. After the lavages, it took several months before I could feel and look better, and, get my oxygen level back down to 3-1/2. Those lavages really put a strain on my whole body. Hopefully, you will be able to get your oxygen level down too! Yes, life is very different for me too. Feel free to email me if you have any questions, or just want to vent: LanaWadley@charter.net
tiffany.roaten@yahoo.com So glad I found you girl, will be emailing you soon.
I just got back from the 2018 Rare Lung Disease Conference and PAP Day discussions. Like you I asked my doctors to put me out of my misery.
The past five years I have been reading every study I could find relating to PAP symptoms and progression, while also trying to figure out the cause of my PAP. I believe I found the cause of my idiopathic autoimmune PAP and it is not what is currently being investigated.
A little over a year ago my doctors told me I needed a lung and liver transplant due to damages from my overall lipid disorders. I was ineligible for both transplants because my PAP was misunderstood or unknown to most doctors. Add in the doctor's remarks that my liver condition was "strange", because my hepatic biopsy confirmed my liver was like that of a pregnant woman.
My doctors arranged a "death nurse" to help me go comfortably. I then convinced my doctors to let me follow another regimen of drug treatment that I hoped would work based on my 5 years of intensive reading of medical studies.
The regimen has worked remarkably well. Today, my PFT's are in the low normal range and without a lavage both lungs are now clean. My arterial blood gas tests are around 98,mmHg.
For the first time in 15 years, I can think about the future.
Write me an email at the above address. I can tell you more of my story and I want to ask you a few questions to see if we share any similar patterns between our family health histories. I know I am better today because of the medications and diet I am following. Of course your doctor would need to be involved and the medications and treatment your doctor would have to agree with. But the diet part will pleasantly surprise you. I lost 50 lbs eating real ice cream, red meat, scrambled eggs and lots of butter.
My autoimmune PAP is a metabolic disorder. Idiopathic no longer applies.
There is hope, stay strong. Contact me at relkins48@gmail.com.
Robert Elkins