Her bronchoscopy and ct scan have shown her condition has worsened greatly. She has much less normal, unaffected tissue in her lungs than a year ago.
After consulting with several specialists it has been determined that other than the oxygen and embrel there is very little the hospital can do at this time.
We have been referred to the lung transplant center and specialists
in Houston and will have to travel there within the next month for Brenna to have a pre-transplant evaluation and be placed on the list.
There are two parts to the list inactive and active and it is not yet determined which part of the list she will be on now. Her rate of decline and condition will determine when she is placed on active to wait for lungs.
The transplant will not cure her disease but they are hopeful it could buy her time. However it is a risky procedure and has a 60% survival rate for five years. Without a transplant her long term prognosis as of now is two to three years. She will continue to decline and eventually (without a transplant) need ventilation and breathing assistance.thout a lung transplant Brenna has been given a long term survival of 2-3 years. Thank you for all your help!U
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