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My sister's dying - ideas please!
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<blockquote data-quote="Marguerite" data-source="post: 348320" data-attributes="member: 1991"><p>OK guys, I'm back.</p><p></p><p>Lisa, if you can find that link again I'll be grateful. Don't rush, I'm about to go to bed, it's heading for midnight here.</p><p></p><p>I didn't get to ring my sister up north - I found I had a message on my phone from W, so I rang her. W has rung sister up north for me.</p><p></p><p>News - the immunologist arrived, brother in law and J's daughter were there, brother in law rang W who rushed over and they all got told - J has idiopathic pulmonary fibrosis. GoingNorth, looks like you win the kewpie doll.</p><p></p><p>GoingNorth, you said the biopsy should show this - she had the biopsy days ago, but this wasn't diagnosed until today and even now, it's not official. We're getting some concerns about the respiratory specialist. Not that he's not very good, HE probably knew what it was, but he's not telling us anything that makes sense. He even didn't want to call in any other doctors (including the immunologist) - last night he was rude to the family when he flatly refused. But it is our right to ask for it. J's daughter got angry with him and insisted, but it took brother in law & W asking the registrar (and giving him some names including one that J had already been referred to before she came into hospital) for something to be done there.</p><p></p><p>I think this was probably caused by some immune factor. What that factor was - I guess it's no longer important. brother in law is so thick sometimes - he said J had stopped all cows milk months ago because she was concerned she was allergic "so it can't be a cows milk allergy". But she w as still taking the cow colostrum pills every day! Then when I was talking about what I have for breakfast, brother in law said, "J doesn't eat muesli. She has yogurt for breakfast instead."</p><p>And yogurt doesn't have cows milk? [Marg smacks forehead]</p><p></p><p>The immunologist is one of Sydney's best, has contacts at the hospital which does pioneer work in transplants. We'll know more tomorrow, this news really is Stop Press.</p><p></p><p>She is in good condition apart from her lungs. That's been the puzzling thing - her lungs are so bad, but other organs are OK. If this were a bat-borne disease then we would expect it to affect more than just her lungs, especially if they're this bad.</p><p></p><p>She's really gone downhill incredibly fast. I'm glad I got to see her today. She's hooked up to a respirator, she's unable to talk and frankly, although she knew I was there and knew it was me, she won't remember. She's on medazolam, among other drugs, which stops her form laying down memory of what's going on. So if she ever recovers from this, this should all be a blur. As I arrived she was choking and the nurse had to suction her out. She's being 'specialled' and even to get in to the intensive care complex, we had to be buzzed in and also had to wash with antibacterial gel.</p><p></p><p>They changed her dressings while I was there - when they did a lung biopsy they punctured a lung and she needed a drain to re-inflate her lung. That drain came out yesterday and her lung seems to be staying up. In a way this is good news - she is in better shape than the respiratory specialist has indicated, if she can handle and recover form a pneumothorax. So perhaps she is strong enough to take a lung transplant after all.</p><p></p><p>As I said, we'll know more tomorrow after the immunologist gets back to us. There may be some treatment trials we could get J into, which could save her. But from what I have read, she will need a transplant to survive.</p><p></p><p>J's daughter and husband both acknowledge the professional capability of the current treating specialist (the respiratory guy) but are going to ask for another opinion with a view to changing doctors, because they are finding him difficult to deal with. W tried to call him and he refused to talk to her at all "unless it's urgent". W said, "I think you could call this urgent." The message then came back that he might be able to give her a few minutes of his time in a few days. All this while we're seeing J struggle to survive each day - we have not been impressed with that attitude. Yes, he's done the tests, but he hasn't shown any compassion for us nor any desire to talk to other doctors or pick other doctors' brains. Not happy about that, either. It's like a bloke getting lost but refusing to ask for directions, out of pride, arrogance and possessiveness of his patients.</p><p></p><p>I'll update you as I know more.</p><p></p><p>I'm still trying to read through the other links from today - I had already read the AMA one a couple of weeks ago, after J tried to push the pills onto me when I got the cancer diagnosis.</p><p></p><p>I'll post this and get reading.</p><p></p><p>Thanks, guys.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 348320, member: 1991"] OK guys, I'm back. Lisa, if you can find that link again I'll be grateful. Don't rush, I'm about to go to bed, it's heading for midnight here. I didn't get to ring my sister up north - I found I had a message on my phone from W, so I rang her. W has rung sister up north for me. News - the immunologist arrived, brother in law and J's daughter were there, brother in law rang W who rushed over and they all got told - J has idiopathic pulmonary fibrosis. GoingNorth, looks like you win the kewpie doll. GoingNorth, you said the biopsy should show this - she had the biopsy days ago, but this wasn't diagnosed until today and even now, it's not official. We're getting some concerns about the respiratory specialist. Not that he's not very good, HE probably knew what it was, but he's not telling us anything that makes sense. He even didn't want to call in any other doctors (including the immunologist) - last night he was rude to the family when he flatly refused. But it is our right to ask for it. J's daughter got angry with him and insisted, but it took brother in law & W asking the registrar (and giving him some names including one that J had already been referred to before she came into hospital) for something to be done there. I think this was probably caused by some immune factor. What that factor was - I guess it's no longer important. brother in law is so thick sometimes - he said J had stopped all cows milk months ago because she was concerned she was allergic "so it can't be a cows milk allergy". But she w as still taking the cow colostrum pills every day! Then when I was talking about what I have for breakfast, brother in law said, "J doesn't eat muesli. She has yogurt for breakfast instead." And yogurt doesn't have cows milk? [Marg smacks forehead] The immunologist is one of Sydney's best, has contacts at the hospital which does pioneer work in transplants. We'll know more tomorrow, this news really is Stop Press. She is in good condition apart from her lungs. That's been the puzzling thing - her lungs are so bad, but other organs are OK. If this were a bat-borne disease then we would expect it to affect more than just her lungs, especially if they're this bad. She's really gone downhill incredibly fast. I'm glad I got to see her today. She's hooked up to a respirator, she's unable to talk and frankly, although she knew I was there and knew it was me, she won't remember. She's on medazolam, among other drugs, which stops her form laying down memory of what's going on. So if she ever recovers from this, this should all be a blur. As I arrived she was choking and the nurse had to suction her out. She's being 'specialled' and even to get in to the intensive care complex, we had to be buzzed in and also had to wash with antibacterial gel. They changed her dressings while I was there - when they did a lung biopsy they punctured a lung and she needed a drain to re-inflate her lung. That drain came out yesterday and her lung seems to be staying up. In a way this is good news - she is in better shape than the respiratory specialist has indicated, if she can handle and recover form a pneumothorax. So perhaps she is strong enough to take a lung transplant after all. As I said, we'll know more tomorrow after the immunologist gets back to us. There may be some treatment trials we could get J into, which could save her. But from what I have read, she will need a transplant to survive. J's daughter and husband both acknowledge the professional capability of the current treating specialist (the respiratory guy) but are going to ask for another opinion with a view to changing doctors, because they are finding him difficult to deal with. W tried to call him and he refused to talk to her at all "unless it's urgent". W said, "I think you could call this urgent." The message then came back that he might be able to give her a few minutes of his time in a few days. All this while we're seeing J struggle to survive each day - we have not been impressed with that attitude. Yes, he's done the tests, but he hasn't shown any compassion for us nor any desire to talk to other doctors or pick other doctors' brains. Not happy about that, either. It's like a bloke getting lost but refusing to ask for directions, out of pride, arrogance and possessiveness of his patients. I'll update you as I know more. I'm still trying to read through the other links from today - I had already read the AMA one a couple of weeks ago, after J tried to push the pills onto me when I got the cancer diagnosis. I'll post this and get reading. Thanks, guys. Marg [/QUOTE]
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My sister's dying - ideas please!
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