Stand By Tedi

In 2013 my stepmom Tedi was diagnosed with Pericarditis. Pericarditis is a very painful inflammation of the sac the heart is in. The doctors couldn't figure out why she got it or what caused it so they ran tests for autoimmune diseases but they were normal. The Pericarditis got worse and she ended up with Myocarditis which is inflammation in the actual heart muscle. She was left with Supra Ventricular Tachycardia. Her resting heart rate went from the 60's to the 130-140's and escalated to 200 bpm at times. No medication helped the issue so she received a Cardiac Ablation in October 2015 but it didn't work so she had another Ablation at UW in Seattle two months later. The doctor had to ablate so much of her right atrium that she put a hole in her heart and Tedi had a cardiac tamponade on the table. She thankfully recovered and hoped that was the end. But it wasn’t. She had a chronic cough and shortness of breath that both continued to get worse. She was told the cough was probably from her reflux and recommended that she get a Nissen which is surgery done to prevent it, so she did.
My step mom had 3 surgeries for things the doctors thought were causing her problems.

Her health has continued to get worse and after a bronchoscope, many biopsies, abnormal labs and misdiagnoses later they still couldn’t pin point what was wrong. She was sent to National Jewish in Denver and throughout multiple trips they discovered she has Bronchomalacia which is weak cartilage in the walls of the bronchial tubes, she had a bronchoscopy which showed her right mainstream and right intermediate bronchus collapses by more than 80% every time she exhales, and the doctors officially diagnosed her with Relapsing Polychondritis.  This is an autoimmune disease that attacks the collagen in your body. It is a very rare disease so there is not much research done on it and there has been no clinical trials for treatment. Many are only affected in their nose or ears, but unfortunately due to the prolonged time it took to discover the disease, my step mom is affected in her heart, lungs and esophagus. She has been on several meds including one that is used for chemo. She can no longer work and she can't do anything that raises her heart rate or respiratory rate which puts her out of doing many of the activities she loves. The harder she breathes the more her airways collapse.
The doctors here want her to have surgery immediately because they fear she will die. She went back to Denver to consult with the thoracic surgeon and he wants to wait to do the surgery until she is on a good treatment regimen that is controlling the Polychondritis.  The surgery to repair the airway is very invasive, painful and a risky one. He would have to crack her chest open, place a mesh in and stitch her trachea and airways to it. He said we had to exhaust all other options before he would do it. If the Polychondritis can be controlled she will go back to Denver to get stents placed to make sure it takes care of the problem. If they work he will do the surgery.

Tedi is currently on oxygen and is scheduled to meet with a Dr. in Maryland in a few months who studies and has Relapsing Polychondritis as well.

Due to the many surgeries, medications and trips to out of state hospitals my dad and Tedi are struggling. I am reaching out to all those whose lives Tedi has touched over the years and asking for your help. Tedi is a wife, mother, daughter, friend, grandmother, supporter and so much more to so many. Because of her condition, stress has a great deal to do with her recovery. They are trying to do what they can to pay the bills and alleviate the stress of unpaid medical expenses. All i want in this world is to see my family happy and stress free and I’ll do anything for that to happen.
God bless you for anything you are able to do to help.