Any updates on Margs sister today?

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
 

TerryJ2

Well-Known Member
Thank you, Marg. We all think about you and your family a lot.
I really hope you get some sleep; it's all so stressful and you don't want to make yourself sick, too.
{{hugs}}
 

Nancy

Well-Known Member
I am so thinking about you Marg. We went through something very similar with my Mom who was put on a ventilator when her breathing failed during a simple surgery and I know this is a heartwrenching and horribly difficult time for you and your family. So many ups and downs it tears your heart out.

Sending hopes and good thoughts to you and yours.

Nancy
 

Marguerite

Active Member
brother in law has emailed a lovely photo of him and J at a bush barbecue they went on, just the two of them I think. Looking at it, I think it must have been maybe last Christmas or maybe even January, so very recent. She's wearing a summer dress; he's wearing a t-shirt & Stubbies (Aussie shorts). Very informal so she's not made up or anything, it's just her. She looks so lovely, so young. Looks maybe 35, 40. Not 65. Knowing she's probably not wearing any makeup in the photo, knowing she'd had no plastic surgery, no botox - she doesn't look the physical type to be now struggling for air. She looks too young and healthy.

I emailed the photo to MidWestMom (we share emails sometimes). brother in law had also taken a photo of J as she is now, attached to a ventilator, body inflated by prednisone - I'm glad he didn't post that too, she is a very private person and it would have upset her a great deal.

In a way, knowing the state she is in now, the photo of her looking happy, relaxed and healthy so recently is more shocking.

Marg
 

Hound dog

Nana's are Beautiful
I'm so glad she is improving marg. That futuristic hospital bed sounds amazing, I'd love to see one of them in action. Your sister remains in my prayers.

Hugs
 

Marguerite

Active Member
I got a phone call tonight - J is off t he ventilator!

I haven't got a lot of details, I was told she's still on the oxygen mask, which I take to mean she's still on CPAP, but the tubes are out of her throat and she can talk at last!

Apparently her first word was, "Water..."

Poor darling, ten days on a ventilator and not able to take a sip of anything in all that time.

This is sooner than we expected, I think it's sooner than her specialist expected. It seems that the massive prednisone is what has done the trick, so we don't know what will happen from here. She might continue to improve at least for a while, and hopefully it buys her time. And buys time for her doctors.

We should have the more detailed pathology report by Wednesday evening. That's 48 hours.

I should be able to sleep tonight at last.

Marg
 

gcvmom

Here we go again!
:bigsmile: Fantastic!

I wonder if there's been any change in her chest xray after all the prednisone?

She is certainly a tough lady -- I hope that if a transplant is the best option for her, her family can accept that and support the decision. And I hope that a suitable donor can be found soon.
 
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