Prayers...advice...anything

[Gemini]

My husband is in the hospital (university of Penn.)right now. He has been on a ventilator since late December. He is keeping his nutrition up and he is still able to walk at least 600 feet. The doctors had a meeting with us and said they just don't feel comfortable transplanting someone who has been on a ventilator for as long as he has been on it. They are giving it until the end of this month. If he doesn't get lungs by then they are washing their hands of him and taking him off the list. Obviously we are very scared. My husband is absolutely not ready to call it quits or give up on himself. We are praying that lungs come soon. And we are looking into other possible hospitals. Does anyone have any advice they can offer us?
And did I mention I am eight months pregnant, which is a miracle itself.

 

[Gemini]

My husband is in the hospital (university of Penn.)right now. He has been on a ventilator since late December. He is keeping his nutrition up and he is still able to walk at least 600 feet. The doctors had a meeting with us and said they just don't feel comfortable transplanting someone who has been on a ventilator for as long as he has been on it. They are giving it until the end of this month. If he doesn't get lungs by then they are washing their hands of him and taking him off the list. Obviously we are very scared. My husband is absolutely not ready to call it quits or give up on himself. We are praying that lungs come soon. And we are looking into other possible hospitals. Does anyone have any advice they can offer us?
And did I mention I am eight months pregnant, which is a miracle itself.

 

[MiahsMommy]

I'm sorry I dont have any advice. I myself am still new to the whole cf diagnosis. I want you to know ill keep your hubby and family in my prayers! Hang in there! God is good.

 

[MiahsMommy]

I'm sorry I dont have any advice. I myself am still new to the whole cf diagnosis. I want you to know ill keep your hubby and family in my prayers! Hang in there! God is good.

 

[cnsky54RRT]

Has your husband had any infections that can be traced to the ventilator? One of the big problems with a vent is that the patient is really susceptible to getting pneumonias that can be traced to the tube itself or lung hygiene that has not been totally effective. Most hospitals want a patient changed over to a tracheostomy tube after two weeks with an endotracheal tube, and getting infections can rule out a transplant because docs think that they may not survive if in a weakened state. There is also the concern that a patient on a vent is deconditioned and too weak to recover from the stress of the transplant because he has been supported for too long, but since your husband is able to get up and walk DESPITE being on the vent, he is certainly better than most patients.

Which docs want to wash their hands of it? Pulmonology, surgeons, CF specialists? Sounds like your husband can be a successful candidate, and is being rushed into a deadline. Consult someone else and see if you can find someone who will be on your side.

 

[cnsky54RRT]

Has your husband had any infections that can be traced to the ventilator? One of the big problems with a vent is that the patient is really susceptible to getting pneumonias that can be traced to the tube itself or lung hygiene that has not been totally effective. Most hospitals want a patient changed over to a tracheostomy tube after two weeks with an endotracheal tube, and getting infections can rule out a transplant because docs think that they may not survive if in a weakened state. There is also the concern that a patient on a vent is deconditioned and too weak to recover from the stress of the transplant because he has been supported for too long, but since your husband is able to get up and walk DESPITE being on the vent, he is certainly better than most patients.

Which docs want to wash their hands of it? Pulmonology, surgeons, CF specialists? Sounds like your husband can be a successful candidate, and is being rushed into a deadline. Consult someone else and see if you can find someone who will be on your side.