Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Cryptogenic Organizing Pneumonia

What is Cryptogenic Organizing Pneumonia?

Cryptogenic Organizing Pneumonia is a rare disorder characterized by inflammation of the bronchioles and surrounding lung tissue.

 

Cryptogenic Organizing Pneumonia is a rare disorder characterized by inflammation of the bronchioles and surrounding lung tissue.
Acknowledgement of Cryptogenic Organizing Pneumonia has not been added yet.
Prevalence Information of Cryptogenic Organizing Pneumonia has not been added yet.
Synonyms for Cryptogenic Organizing Pneumonia has not been added yet.
Cause of Cryptogenic Organizing Pneumonia has not been added yet.
Symptoms for Cryptogenic Organizing Pneumonia has not been added yet.
Diagnosis of Cryptogenic Organizing Pneumonia has not been added yet.
Diagnostic tests of Cryptogenic Organizing Pneumonia has not been added yet
Treatments of Cryptogenic Organizing Pneumonia has not been added yet.
Prognosis of Cryptogenic Organizing Pneumonia has not been added yet.
Tips or Suggestions of Cryptogenic Organizing Pneumonia has not been added yet.
References of Cryptogenic Organizing Pneumonia has not been added yet.
Introduction Created by kaesumsmom
Last updated 3 Jun 2014, 03:26 AM

Posted by kaesumsmom
3 Jun 2014, 03:26 AM

My name is Terri. In February of this year I went to the ER at the hospital in my small town thinking that I had a kidney infection because my back hurt. They told me that I was starting to develop pneumonia (from xrays). I went home on antibiotics and an inhaler. I saw my physician the next day and she didn’t change anything. Five days later I was back in the ER because I couldn’t breath. Now I had double pneumonia. They admitted me and that’s all I remember BUT family says that in 24 hours a lot changed. My oxygen level dropped to the point where I was hallucinating. Walking around the hospital telling everyone I was saddling my horse to go to a pawn shop. 24 hours after that I went on a vent and was being flown to a bigger hospital (Miami) to be put on E.C.M.O. (Extracorporeal Membrane Oxygenation) tovbypass heart and lungs and to oxygenate my blood. I was in ICU for over 3 weeks before they let me finally go home on oxygen and told me I had ARDS. (Not a surprise) I was home three weeks and was woke up by my fiance because he could hear me wheezing. My O2 sats were in the 60 to 70’s and I was 911 to the hospital. Once I was stable I was then transported to a bigger hospital (Miami again) for testing and biopsies because ALL tests done on me came back normal. They could not figure out why I was getting pneumonia because nothing came back wrong. Finally I was diagnosed with Cryptogenic Organising Pneumonitis (COP). To top it all off I acquired ARDS from being on the vent.

Community External News Link
Title Date Link
Community Resources
Title Description Date Link

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

I'm looking for info/ group...
My name is Terri. In Febru...
My son was diagnosed with b...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Introduction

Created by kaesumsmom | Last updated 3 Jun 2014, 03:26 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.