Originally Posted by
SophiasMom
Hi Teri,
So sorry to read that your daughter is dealing with this. Yes, both of my lungs filled with blood and I was intubated twice during my 31 day hospital stay. I was dx'd in Aug 16. I also received plasmapharesis, six units of blood and four of plasma. I was on high doses of prednisone and Ritiximab. I left the hospital in a wheelchair due to the muscle atrophy that happens when you are in bed for so long. I certainly hope your daughter is doing better now and off the vent. Please reply if you have any more questions about the process! Hugs to you Momma.
My name is Teri Raspanti. My family lives near Denver, Colorado. My 14 year old daughter was admitted to Children's Hospital on 3/16/17 with what we thought was pneumonia. For this being a rare disease and even more rare in children, the doctors diagnosed it fairly quickly. She developed pulmonary hemorrhage and was intubated. She was started on high dose IV steroids and Rituximab. She's had 2 rounds of 3 day plasmapheresis and her first Cytoxan. Those treatments and meds were not able to control the inflammation and she was put on VV ECMO to rest her lungs. Today is 3 weeks since she was admitted. We are finally seeing slow progress. We are hoping to wean her form the ventilator soon. I still can't believe all this is happening! Has anyone had a pulmonary hemorrhage?
Bookmarks