My sister's dying - ideas please!

Marguerite

Active Member
That's great feedback, guys.

I've got a lot to do right this minute, only a very short time to do them. First priority is to ring eldest sister in Port Macquarie, I promised her I'd call when we got home and give her feedback. It's about 8.30 pm now, it's been a long day. I'll actually go through the links with her while I'm on the phone to her.

I also have to draft an email to brother in law summarising what I said to him today and what we've come up with - hopefully he'll print it out and take it to the docs tomorrow. After all, the doctors DID ask for family feedback and a brainstorm in general.

Beth, thanks for the link to the doctors lounge, I'll draft something for them too. As for the substance in the flour and Bisquick mix - could it have been ergot? Or some similar fungal toxin. I think they've ruled that out.

I'll put my draft summary here as well.

I'll post again in a little while, after I've spoken to my sister. The summary we draft for brother in law will form part of my post for you guys too.

Marg
 

Hound dog

Nana's are Beautiful
Keeping fingers crossed Marg, and praying hard for your sister. She has one huge thing in her favor, a pro-active family who are well educated in the areas she needs, and who have contacts to people with even more information.

I couldn't find a darn thing on this in either my pharm book, which surprised me as it has all sorts of natural remedies listed, or in my drug guide. I haven't had much time to research due to finals.....but I did look around a bit online. I have issues with any product that claims to be side effect free. And that's what I kept seeing. One of the main sites doesn't even have a place where you can look up adverse effects, for pete's sake.

But I stumbled upon a site that did have adverse effects listed for the colostrum type......and the big one was the fluid in the lungs. Then I just had to lose internet because my power failed and I didn't get the darn link. It didn't have tons of info, just stated that fluid in the lungs was an usual adverse effect. I haven't had time to check the above links others gave, so I don't know if they happened to stumble onto the same site or not.

(((hugs)))
 

Marguerite

Active Member
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
 

gcvmom

Here we go again!
FIRE that doctor!!! Arrogant is an understatement! You cannot afford that in a doctor when someone's life is hanging in the balance. Can they start her on an immune suppressant to stop the attack on her lungs? There are so many available now that are used for RA, Crohn's and a host of other autoimmune disorders. Just thinking out loud.
 

SRL

Active Member
If there's any hope left at all, I'm all for firing the doctor too! A few years ago a relative became seriously ill with mysterious symptoms. Her husband insisted on keeping her at a hospital that had treated him successfully, and 3 weeks went by without any answers while deteriorated. Finally they took her to a well known research hosptial and within 24 hours they had her diagnosed. In her case, the weeks didn't matter to the outcome as the disease she had was always fatal, but had it been something else it could have made a difference. Plus the weeks of angst for the family, along with the costs of repeated diagnostic tests that all led back to the same no answers. Marg, I sincerely applaud you for the hunt--I'd come across my relative's condition (Creutzfeldt-Jakob Disease) in a google search of symptoms but dismissed it because it was so very rare. If the docs had bothered to consult other neurologists, or even had bothered with a simple online search they might have arrived to the answer much sooner.
 

Star*

call 911........call 911
Marg,

I'm not sure how things are run in Aussie world, so I have to ask. Can you fire this bloke and bring in another respiratory specialist from another hospital? Can you go to the hospital administrator and tell him that the man is a jerk? Would it help or hurt? Can you just ask HIM why he's being such a patoot?

Okay now on a weird and odd note - is there any Aboriginal medicine that would help her? I ask because when I had the problem with my face you recommended something that wasn't a common thing here - and never would have tried it except --just asking? Sometimes herbs etc are better than you know?

Sending you all the strength I have to roo land. Be strong dear one.

Hugs & Love
Star
 

TerryJ2

Well-Known Member
Marg, I am so glad to see you here. Many hugs.
Add me to the list of people who want to fire that doctor. Your top priority is your sister's life--not that doctor's ego.
 

Marguerite

Active Member
OK, I'm logging on ridiculously early, not because there is any news, but because when husband woke up this morning to get ready for work, his mobile phone registered a missed call from W just before midnight last night. So I immediately rang her back - she never rang us, she was in bed then. We've had some problems with husband's phone getting these delayed messages - W said she's never rung husband's phone, ever, but he rang her phone yesterday afternoon to 'ping' it. That's it. Very angry with Telstra.

But when I rang her, I passed on a thought I had - J was a premature birth. It was odd, really - her twin was full-term, but J was 8 weeks prem, the doctors told Mum. Both born the same day. J was in an oxygen room for some weeks, I can't remember how many, Mum told me tis years ago and with my knack of remembering absolutely everything (which I did back then - not so much these days) I can still remember when she told me, where I was - we were preparing vegetables in the kitchen, I would have been maybe 10 years old.

Not that this would help, but it might explain why her lungs might develop something like this in response to a number of other factors.

Anyway, I mentioned it to W, who didn't think it relevant but I said, "It can't be of use to help her, but it could point the finger to a possible susceptibility we never thought of, which could help reduce finger-pointing elsewhere."

I still think those blasted pills are a factor, but to make a loud noise about them now, if she's never going to get the chance to take them again, is probably pointless.

As for firing that doctor - it's under consideration. brother in law & J's daughter are both angry with him for the lack of communication, and then the attitude especially to daughter who (to her credit, we never knew she had it in her) tore strips off the guy. The girl and brother in law are all for firing the bloke pronto, but M and my brother (now back home) said, "But he was lovely when he talked to us."
I think he was lovely then, because they were probably suitably respectful, possibly worshipful even. I know the type - I used to work in a medical school and saw these guys at the medical student stage. Most were nice people but you got the occasional student (I'd say about 20% of them) who acted like arrogant jerks because they had the brains to get into Medicine. Often the difficulty of the course knocked that out of them, but a few who were genuinely bright, enough to do well, maintained the arrogance. And of course it is the brighter ones who become specialists.
[side note - we had a couple of academics who were themselves outputs of our course who were arrogant - we used to delight in looking up their marks in the archives, it made us feel a lot better to find there were times they barely scraped through].

So W & I have advised brother in law and J's daughter (who's about 30) that it's their choice, if they're unhappy with the specialist they need to:
1) acknowledge that despite his manner and attitude, he HAS been doing all the right tests and this has set things in place for other doctors to come along and tell us what is wrong;

2) admit that he's good at his job when it comes to saving lives;

3) complain to the Intensive Care Unit Director (the most senior doctor) and if necessary, go right to the top, that this particular specialist is an absolute arrogant ratbag (the site won't let me use the words I want to) who has failed to properly inform the family, refuses to communicate with family members who CAN help other family members understand and that he has also failed to give a diagnosis when all the tests have been done and it is patently obvious what it is. He's also been pessimistic about whether she's strong enough for this or that, then gone and done it anyway, caused further problems we weren't warned about (such as the collapsed lung from the biopsy he said she wasn't strong enough for) but which we've been told is a known possible outcome - the same pessimism has said that J is too weak for a transplant, but if she's too weak for the biopsy, they did it anyway, she got the complication of collapsed lung, she has recovered from that and is back to where she was - why not a transplant?

BUT

it's not a good idea to just fire him. True, he's an arrogant - sharp pointy thing (with circumcision scars on his neck) - but he still could be the best doctor for her. Possibly getting told off and made to communicate with us all could do the trick.

So we've told them to ask for another opinion from another respiratory specialist, we also want the immunologist on board and allowed to do the job without any hassling. After the second opinion, then the family should decide whether to keep the first doctor on board as J's main specialist, or fire him from the case.

Basically, we could fire this bloke and find the next one is just as arrogant, but less competent.

Sorry to waffle about it, I'm not as clear in organising my thoughts this morning. It is starting to get to me - I don't think I will have this sister much longer. It was awful seeing her yesterday suffering like that. The spasms she had when I arrived, part of me felt (irrationally, I knew) that it was because I walked in, that it started. The nurse was quick to attend to her and got her settled down, all I could do was find the box of tissues and grab one to wipe her mouth where saliva was dripping past the respirator. Then I saw her tears, and grabbed another tissue to gently dry her eyes. Poor darling. She's too weak to communicate, but I think the sedation is also a big factor here. But without the sedation she'd be fighting the respirator. She just wanted to hold my hand. Or her husband's hand. Most of the time her eyes close, but ten she will open them and look around to see who is there. She can nod and shake her head, can squeeze your hand, but now is too weak to write notes.

I hate to think how M is feeling. No wonder she was teary when I spoke to her on Sunday. And M is fairly tough and pragmatic, even more so than I am.

From what I was able to find out about this last night, the problem now is, as I suspected, a consequence of whatever caused the damage. A cascade of events has taken place and removing anything form the cascade is now too late, the damage is there and the process of further damage is continuing. Even if the process stops developing, the damage there now is impossible to live with, I believe it is unrecoverable.

GCVMOM, an immune suppressant would have been worth trying a few months ago, but it's too late for that now. And it only works in some cases, plus they would have had to know tat she had an immune problem. The trouble was, few of us knew how ill she was, she said she was having some breathlessness and thought it was a cold that wouldn't go away. She's been increasingly very private about her own issues, perhaps not wanting to make a fuss. I told brother in law yesterday about some of her past health problems and he had no idea about any of it, she had never told him. her GP put her on prednisone (which also suppresses the immune system) and had referred her to an immunologist, who she was due to see a week ago. But she went into hospital the day before. And the respiratory specialist she got in the admission lottery (since we didn't know any particular specialist to ask for, so you take who gets assigned to you) did not call in any immunologist, and was actually flatly refusing to.

The impression I get of this doctor, what I would write on his report card - "Very intelligent, gets his class work done but doesn't play well with others and cannot network."

I'm going to try and go back to bed for a little while. I'll get difficult child 3 up I think, he wanted to get on the computer after me but could not understand how urgent it was for me to be on the computer last night. It was difficult for me to be gentle with him in explaining why he had to not only be patient, but understand the difference between his desperate desire to watch his videos and play his games, and my determination to communicate and learn about things to help save my sister's life. When I calmly tried to explain this, difficult child 3 said, "You're losing it, Mum. You need to stay calm, like me."
There was no point in getting angry with him, it wouldn't have achieved anything. He doesn't mean to be cruel, he's not trying to be mean in any way, he simply can't feel things the same way. he does care, he just is totally out of his depth with this sort of situation and these emotions. I did say to him, "What if this were easy child who was in hospital and so terribly sick? Wouldn't you get upset with me if I got cross with you using your computer, when I wanted to get on your computer to catch up on a game or a video I wanted to see? You'd be within your rights to get very annoyed with me then."

I think that got through.

OK, I'm going to try to get back to bed. There will be news later on - the immunologist is, I suspect, going to find out J's chances of getting onto the transplant list, but this respiratory bloke is also about to get some level of rocket put under him too. I don't want him putting a spanner in the works, which he can do if he's her treating specialist. I suspect he won't be for long, and at the first sign of any obstruction, they'll boot him off the case.

As I see it, she could well be too weak now for a transplant. This disease moves at different rates, in J's case it has progressed amazingly fast and now (to me) appears to be end-stage, terminal.

I need to give my kids more information now too. Things happen so fast, it is hard to keep up sometimes.

Thanks for all your input so far, guys. I've not posted on anything else for days because this is so all-consuming. Putting the info here plus reading what you have suggested, is what keeps us all (here, in our family) able to consider all ideas and make breakthroughs in possible answers.

Herbal stuff, including Aboriginal medicine - maybe before tis began to really develop, or as it was developing. But now it's like trying to clean the ice off the path and expect doing that to heal the leg that broke when someone fell.

Marg
 

gcvmom

Here we go again!
I'm so very sorry that things seem so bleak for J, Marg. I'm still holding out hope for a chance, however slim, that she can eventually pull through this. You know we'll all be here for you. You are doing everything you can as her sister, and I'm sure the family appreciates it. Hang in there...
 

GoingNorth

Crazy Cat Lady
Marg, you and your family (all of them) are in my thoughts. I'm racking my brain for ideas. J's sx sound so much like husband's when the pulmonary fibrosis went endstage.

The problem is that there's no real treatment for PF or any of the other diseases like pulmonary hypertension, etc, beyond supportive. husband's PF was thought to be the result of a chemo regimen he'd been on during a clinical study.

He also suffered severe,chronic smoke inhalation and benzene overload from serving in Desert Storm...we link the PF to a combination of factors.
 
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