Hi guys. husband got to work early this morning, he took his sister to the airport for an early morning flight home. He just rang me to let me know you'd posted, figured I'd better do the update.
Eldest sister from Port Mac is coming down today. J is having an open lung biopsy today, under general anaesthetic. Apparently this is to confirm the diagnosis. A general in her state - I hope they go carefully.
We've been a bit cranky with the respiratory specialist for not telling us the diagnosis. It took the immunologist on consult to pick up all the reports, case file etc and tell us the (very pessimistic) diagnosis which the respiratory specialist must have known, but didn't tell us. But now another specialist, the cardiothoracic surgeon, says this biopsy is needed to make absolutely certain of the diagnosis in fine detail.
In summary - she's now been in hospital for about ten days. The first few days she was on an oxygen mask but otherwise ambulatory, although weak. Then her breathing got worse and they had to put her on CPAP (the sort of mask people wear at night for sleep apnoea). Within another couple of days she was on a ventilator and for t his has had to be partly sedated. But they need her conscious enough to work with them, so she's on medazolam, which stops her from remembering all the awful stuff happening.
They've done everything possible, the visiting immunologist said. No stone left unturned. But although we can accept that the respiratory specialist (her primary doctor) is extremely competent, he gets a "fail" when it comes to communicating fully, effectively and politely with the family. Arrogant [sharp pointy thing] is the phrase I hear from brother in law. J's daughter's words are stronger. Even if the diagnosis is still not nailed down, we needed HIM to tell us, and not a visiting consultant.
The respiratory specialist has been pessimistic all along, not just about her prognosis (which, from what we've learned, is realistic) but about how strong she is. We've been told she's not strong enough for a lung biopsy - then they did one anyway. This gave her a collapsed lung (which can happen) and she seemed to cope with that (family didn't even know she had a collapsed lung - we weren't told, even though J has one of us with her all day every day). Specialist refused to talk to W, the sister who lives closest and who is there multiple times a day - his receptionist says he doesn't talk to family members unless it's an emergency.
She's still in the private hospital, but I agree with the current decision to not move her - the nearby (huge) teaching hospital seems to have a good connection to this place, the immunologist is from the teaching hospital and had no problem coming in immediately she was contacted. The immunologist was in on Tuesday evening. It is now early Thurs morning and we're still waiting to hear back form immunologist about any support she can get from the big transplant centre hospital (it's in the heart of Sydney's CBD). I'm going to suggest W try to make contact tomorrow with the immunologist if we haven't heard anything - W can also give them an update on J's condition.
W said the cardiothoracic surgeon talked to all the family members present yesterday afternoon (very open and informative) and explained what he needed to do and why. We wish the main treating specialist would talk to us like this. Or at all. The surgeon also showed them, on request, J's most recent CT scan. W just gasped - she can read these pictures and she said it was a white-out, the lower part of both lungs was out of commission, most of one lung also completely out and the top lobe of the other lung, the only bit that seems to be still functioning, is still 'starred' with damage right throughout. They need to confirm exactly what it is and why it is progressing so fast.
We've been told that today's biopsy results won't be available until the middle of next week. I don't know if we'll still have her then. I hope she's on the transplant list already - but the current level of non-communication/non-cooperation from the treating specialist, we don't know.
There has been a second opinion from a respiratory specialist, but from what I gather it was done by the current bloke calling in someone else to confer with him, so it wasn't what I had hoped. The family want action and information, but we also need someone to tell the current specialist to TALK to us (politely, too).
I'm hoping to go visit again on Saturday - even when I'm well, it's a long way to drive and it's not a trip I undertake lightly. So husband is going to drive me on Saturday, after he's got his other tasks done.
Meanwhile all of us have to wrack our brains and think of as much as we can about J's medical history. What I know of her is from what our mother told us over the years. I bless my good memory, but I'm 7 years younger so a lot of it was before I was born or when I was still too young. Apparently she had rheumatic fever - eldest sister told me last night. I never knew - it could be why someone's been working on her heart recently (done via catheter, nothing open-heart).
so today - thinking cap is on.
I got an email this morning from M, J's twin - I'd sent her an analysis of how transfer factor works, with special reference to those pills J was taking. I wrote it and posted it online (anonymously) some weeks ago, before J became ill, so there is no reference to her possibly being allergic to one of the components of the pills. From what I understand - the pills should be fairly innocuous, they contain, at most, some traces of herbal supplements, cow colostrum and possible egg protein. Nothing worse than you'd ingest if you had French-style scrambled eggs for breakfast. But if you take it every day (as J was doing) and just happen to develop a sensitivity reaction to either cow protein or egg protein, but keep taking the pills every day and take more, because you want to feel better...
I don't think it's the only trigger, I think there are multiple triggers here, multiple factors. Maybe the biopsy will give more clues. brother in law says that respiratory specialist says it couldn't have been the pills, but that's via brother in law who doesn't always understand things medical, and who also is telling the doctor in a way to make it clear he doesn't WANT it to have been the pills.
We don't want to blame brother in law in any way - if there's any blame, it belongs to the company that makes ridiculous therapeutic claims, then covers its rear with a disclaimer on the website so they can't be prosecuted. Only their sales people can be prosecuted, for saying what the company (verbally) told them to say. It's sold like legalised drug pushing.
But it now seems from family history, J's lungs were possibly a ticking time bomb since birth.
I've got to go and begin my diary of her medical history, from what I can recall. Her daughter wants to collate all the info in point form and give it to the doctor.
I'll let the previous thread fade into the back pages and update here.
Thanks for all the feedback and ideas - I'm passing it along to the family and the doctors, you guys are making a difference. I also told J, there are people around the world plugging for her and praying for her. It is really helping everybody in the family to know this.
Thank you.
Marg