Support Emma's Fight Against Bechet's Disease

Quick… long story short… on Emma!

We are on day 34 of hospitalization…29 days in ICU. TCH med center.

So much has happened! The hardest part for us so far was M getting intubated because she developed angioedema that compromised her airway. She’s been extubated but has had a 4-5 more episodes since. Those episodes were caught quickly and the inhibitors were given.

She also developed pulmonary edema that resulted in her being put on bipap. There was great concern of heart failure but her Eco’s were relatively normal so they think is was from an angioedema episode. She’s still recovering from that & stable.

Bechets is very rare in the US. M has a severe case of it. She has stenosis and thrombosis (narrowing) of the arteries in her aorta and both her kidneys. 

There are procedures that can help but her inflammation and where the narrowing is located has made it too risky to perform. So…we wait and try to manage her BP and other issues until they can perform an angioplasty (temporary fix) .

Emma has a long road ahead. Ive taken an upaid leave of absence from work so I can be here and focused on her care. Im blessed to have an understanding employer. Jason is back at work in Florida.