Marguerite
Active Member
I got a phone call from W tonight. J is beginning to improve, she was a bit more capable when I saw her yesterday (grabbing tissues to mop her own face, putting the used tissues in a bowl in her lap) and again when W saw her tonight, she seemed to be doing more.
The specialist visited while W and brother in law were there, he spoke to them both. He said J came through the general anaesthetic and the open lung biopsy much better than he thought. He also said that her current improvement should continue, it's probably due to the massive prednisone they have been pouring into her which has finally begun to produce some improvement. She is still recovering form the biopsy - it of course caused another pneumothorax and she still has drainage tube from that while her right lung reinflates.
The specialist said tat the latest biopsy results so far are confirming the provisional diagnosis - respiratory fibrosis. W says we now have to think positive, now she's improving. I could have smacked her - yes, we have to think positive, but not be so blind as to think improvement will continue, or even be more than maintained, for very long. "We mustn't even think about lung transplant," W said, but if the diagnosis is correct, that is the only option for J.
However, she does have a chance, thanks to the prednisone, to come off the ventilator soon. She's now on 30% oxygen (and room oxygen is only 20% so she's not much more than room oxygen now) and her sats are at 98%. The doctor said she is going to find it more difficult for a few days as she comes off the ventilator, but they will be looking after her so she will be getting enough air.
If she can come off the ventilator, even if she goes back onto CPAP, she will at least be able to talk, and drink, and eat. They will be able to cut much of the sedation so she should be better able to tolerate a lot more and be able to make more choices herself about her health care. Hopefully that will help brother in law and her kids not feel so frantic.
I overheard the nurses yesterday say that the biopsy results will be in tomorrow. But it sounds like the specialist has either got the preliminary results, or he's basing his comments on what he saw during the surgery. They're sending the tissue samples and records to a respiratory pathologist, to make sure absolutely nothing is missed. So it seems at last this specialist is using the resources of other experts, and is also keeping the family better informed.
I might be able to sleep a bit better tonight. Here's hoping!
Marg
The specialist visited while W and brother in law were there, he spoke to them both. He said J came through the general anaesthetic and the open lung biopsy much better than he thought. He also said that her current improvement should continue, it's probably due to the massive prednisone they have been pouring into her which has finally begun to produce some improvement. She is still recovering form the biopsy - it of course caused another pneumothorax and she still has drainage tube from that while her right lung reinflates.
The specialist said tat the latest biopsy results so far are confirming the provisional diagnosis - respiratory fibrosis. W says we now have to think positive, now she's improving. I could have smacked her - yes, we have to think positive, but not be so blind as to think improvement will continue, or even be more than maintained, for very long. "We mustn't even think about lung transplant," W said, but if the diagnosis is correct, that is the only option for J.
However, she does have a chance, thanks to the prednisone, to come off the ventilator soon. She's now on 30% oxygen (and room oxygen is only 20% so she's not much more than room oxygen now) and her sats are at 98%. The doctor said she is going to find it more difficult for a few days as she comes off the ventilator, but they will be looking after her so she will be getting enough air.
If she can come off the ventilator, even if she goes back onto CPAP, she will at least be able to talk, and drink, and eat. They will be able to cut much of the sedation so she should be better able to tolerate a lot more and be able to make more choices herself about her health care. Hopefully that will help brother in law and her kids not feel so frantic.
I overheard the nurses yesterday say that the biopsy results will be in tomorrow. But it sounds like the specialist has either got the preliminary results, or he's basing his comments on what he saw during the surgery. They're sending the tissue samples and records to a respiratory pathologist, to make sure absolutely nothing is missed. So it seems at last this specialist is using the resources of other experts, and is also keeping the family better informed.
I might be able to sleep a bit better tonight. Here's hoping!
Marg