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
Right Lung Lavage - 10 liters - Unit #1 without oscillation.....Unit #2 first liter with oscillation....consistency of sand. Unit # 10 last liter ....Pretty clean.
Four years ago I experienced a severe breathing problems. A year later, it worsened and I was diagnosed of COPD. I came across Herbal HealthPoint (ww w. herbalhealthpoint. c om) December, 2018 and learnt about their successful herbal therapy for COPD. I immediately started on the COPD treatment; i began to notice a reduction in symptoms till it all vanished. I feel better and breath better. I Just wanted to share for people suffering from this horrible lungs disease.
thank you for sharing your story. please connect with our pap family on facebook at pap foundation.
Thank you for what you are doing, I felt so much relief after finding this foundation. I am yours in any way, I have a lot of time sitting still now. I want to take advantage of that in any way possible. God bless you all, His hand is on this.
i would love to connect with your doctor at UTSW and hold a local pap education day with him in dallas. i actually grew up near dallas so would be happy to make a trip. connect with us through our social media in the meantime and share your story and help bring awareness. this is a small community that we are really trying to bring together!
Hey Dr. Wang I have joined through social media. I will keep posting, it will be interesting to see if others are experiencing the same type of symptoms. I sit a lot now, so any way I can help let me know. Here is Dr. Abu-Hijleh's contact info:
Muhanned A Abu-Hijleh, M.D.
Ut Southwestern Medical Center Dallas 5939 Harry Hines Blvd. Dallas, TX 75390
(214) 645-6446
https://www.southwesternhealth.com/medical-staff/muhanned-abu-hijleh
Tammy is his nurse, super sweetie!
Tammy Skidmore, M.S.N., APRN, FNP-C
214-645-8300
https://utswmed.org/doctors/tammy-skidmore/
yes stay connected with us. maybe you can become our "pap ambassador" for texas. i'll contact dr. abu-hijleh when things settle down - thanks for the contact!
I wanted to make sure you had all the doctors involved leading up to the PAP diagnosis.
Dr. Mark Batrice, MD is my primary care who got the ball rolling and fought for me. He does not take no for an answer, and cares for his patents like he would his own mother. He is the one that made the call to UT Southwestern and got me connected with Dr. Abu-Hijleh.
Dr Mark Batrice, MD
3132 Matlock Rd Ste 301 Arlington, TX 76015
817-465-6900
https://medicalcityarlington.com/physicians/profile/Mark-P-Batrice-MD
Dr. Francis Tacka was the one who diagnosed the PAP. I loved watching him piece the puzzle together, such a good investigator! And so patient.
Francis E Tacka DO PA
3148 Matlock Rd Ste 505 Arlington, TX 76015
972-988-0844
https://doctor.webmd.com/practice/francis-e-tacka-do-pa-54c730c8-4703-e211-a42b-001f29e3eb44-overview
Dr Bradford did my biopsy. God bless him, and his team. He is very humble, but all the nurses in ICU hold him in high regard, he is some what of a medical super star and I can confirm that 100% for what he did for me. I was calling on Jesus, I was told, when they were waking me up after my biopsy. The worst pain in my life, but the mystery was solved.
Darien W. Bradford, M.D.
Cardiovascular and Thoracic Surgery Diplomate, American Boards of Surgery and Thoracic Surgery
515 W Mayfield Rd Suite 404 Arlington, TX 76014 Office: (817) 465-5311 Fax: (817) 465-8569
http://www.bradfordmd.com/index
Dr Bradford's nurse:
Kara Bader, MSN, RN, AGACNP-BC
3301 Matlock Rd
Arlington, TX 76015
682-509-4002
F 469-713-8117
Kara.Bader@MedicalCityHealth.com
Dr Phan is an anesthesiologist and pain management specialist. I have had sever stabbing pain in my right lung, and Dr. Batrice had him do a nerve block in my back before the first lavage. I did not have it done the 2nd lavage and I paid dearly. I understand not everyone has this type of pain, and I thank God for that, and I know someone will find the cause of mine. Dr Phan was the only doctor who had seen a PAP patient in his residency, and he was able to tell me what was to come. Another angel in my pathway to recovery.
Don Escarzega-Phan, MD
Anesthesiology Pain Management
1119 W. Radol Mill Rd. #100
Arlington, TX 76012
Office 817-860-2700
Fax 817-8602704
https://doctor.webmd.com/doctor/don-escarzega-phan-516279d9-45aa-47b9-8e11-5cbaa0ddc856-overview
I also have the head of respiratory at two different hospitals. Not sure how much you want?
we are going to do a pap ed day in dallas 1/31 with your doc - please come!
this is good. i am more trying to find the patients and docs who have seen lots of pap patients. the research has advanced things and we can now make the diagnosis with a blood test only which is nice.
Four years ago I experienced a severe breathing problems. A year later, it worsened and I was diagnosed of COPD. I came across Herbal HealthPoint (ww w. herbalhealthpoint. c om) December, 2018 and learnt about their successful herbal therapy for COPD. I immediately started on the COPD treatment; i began to notice a reduction in symptoms till it all vanished. I feel better and breath better. I Just wanted to share for people suffering from this horrible lungs disease.
I read about the blood tests! (my right lung sighs) Awareness and healing...
Hi Tiffany!
My name is Robert Elkins and I also have idiopathic auto-immune PAP. I went to the Rare Lung Disease Conference in Cincinnati this past weekend and am willing to talk with you about PAP and a treatment that has worked very well for me. I would like to ask you some questions to see if we share any common problems and if my treatment might be something your doctor would consider. I am amazed at how things have changed. My email is relkins48@gmail.com . Send me a hello and we can talk. Don't give up hope!
Four years ago I experienced a severe breathing problems. A year later, it worsened and I was diagnosed of COPD. I came across Herbal HealthPoint (ww w. herbalhealthpoint. c om) December, 2018 and learnt about their successful herbal therapy for COPD. I immediately started on the COPD treatment; i began to notice a reduction in symptoms till it all vanished. I feel better and breath better. I Just wanted to share for people suffering from this horrible lungs disease.