My wife was just diagnosed with PAP after having symptoms of "pneumonia" since late November 2017. Most everyone we have met with while very nice, are not experienced with this lung disorder. We live in Arlington, Texas and are looking for a specialist near the area. We are also interested in the whole lung lavage as this is more than likely the next step in the treatment process. Does anyone have any suggestions regarding local physicians, specialists or hospitals that specialize in pulmonary disorders and treatments?
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droaten
Apr 8, 2018
Just diagnosed...
Just diagnosed...
6 comments
1
@droaten: I am very sorry to hear about your wife's diagnosis yet am glad her condition was finally identified so you can now seek effective treatment. Our growing list of PAP specialists can be found here [https://www.papfoundation.org/pap-map] but we do not have a specialist identified in Texas at this time. Being smack-dab in the middle of the country, you can go either all the way east or west to our regional centers (in Los Angeles & Cincinnati) for extraordinarily experienced PAP specialists, or venture immediately north to Colorado where a very experienced Dr. James Ellis practices (although I understand he may be retiring soon.) There are a few new promising treatments being utilized, often most effective when started immediately following whole lung lavage, so it is imperative you coordinate your wife's long term treatment plan with knowledgeable PAP clinicians ASAP. Please feel free to reach out to me directly if I can provide any further assistance: chrish@papfoundation.org
Contact info for Dr. Ellis:
Aurora, CO
James H. Ellis, Jr. MD
Professor of Medicine and Pulmonary Diseases
University of Colorado Hospital
Mail Stop F747
1635 Aurora Court
Aurora, CO. 80045
TEL. 720-848-4400
FAX. 720-848-0750
Nurse Contact: Stephanie Storch, BSN, RN
Meghan Abrams, MSN, NP-C
Hi Dr. Ellis, I am David's wife Tiffany. Dr. Muhanned Abu-Hijleh with UT Southwestern in Dallas TX has had 8 PAP patients over his career, and does one to two lavages a year. I had two this June and July. Here is his info:
https://utswmed.org/doctors/muhanned-abu-hijleh/
God bless you for what you do!
Tiffany Roaten
I’m wondering what the typical wait time is to see Dr Ellis. I’m being put off by Mayo Clinic until April now.
HI I am a canadian women 49 who was diagnosed with PAP. I have had three open lung biopsy two who lung lavages, Rituximb infusions (2). And still not one doctor here in Canada can help me with my PAP. I also have angeodema to anything scented and to most of antibiotics. My IGE level is 1029. I had a collapsed lung, been intubated over 30 times. Had cardiomyopathy, I had a tracheotomy in August 2017. I have central sleep apnea. I have a portacath on my right chest as its extremely difficult to draw blood or insert and ivy or central line. When I show up at hospital right away they take an xray and tell me thats a pneumonia. When I tell them I have PAP they say whats that. refer me back to my respirologist who says ok let me look into this and I get back to you. I been told I am to complicated and dismissed. I have lots of secretions thick white mucus sometimes when i get rushed to hospital cause its difficult to breath they say to me we will suction you and they try but its so thick that it gets stuck in the canal or the catheter. get me above 91 oxygen and send me home after a few days. I have been in ICU over thirty times this 2018 year for respiratory issues. But no one seems to address the issue of PAP. I found a new risperologist who told me we are going to work on your anaphlyaxis right now first. Then will work on your PAP. The tech specialist said thats not the tech mucus thats coming from your lungs your doctor needs to address this issue. And I keep getting passed on to another. I am looking for help as I know there is a new procedure where they take your blood put it through the machine and take out the protenosis. Any help would be greatly appreciated.
Hi Maria, Our daughter is a PAP patient and has been treated relatively successfully at Vancouver General Hospital, by respirologists in the Lung Centre. She's had several lavages with no complications. The lavages have been performed by 3 different members of the Thoracic Surgery department.
Hi Maria, I'm so sorry to hear about your extensive medical issues. Have you found a physician yet?
A few patients from Canada have contacted us, perhaps our PAP community can help. Where in Canada do you reside?