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
