Any updates on Margs sister today?

Discussion in 'The Watercooler' started by nvts, Mar 17, 2010.

  1. nvts

    nvts Active Member

    Marg, if you're popping in (or Marg's Man!) please know that we're thinking about and praying for all of you!

  2. tiredmommy

    tiredmommy Site Moderator

    It's 4:30 am Thurs in Sydney right now... it could be a few hours before an update.
  3. Marguerite

    Marguerite Active Member

    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.

  4. mstang67chic

    mstang67chic Going Green

    I'm coming into this late Marg and with no ideas. But....sending lots of hugs for you and the family as well as prayers and good thoughts.
  5. Marguerite

    Marguerite Active Member

    She has come through the surgery very well. She took a general anaesthetic for the lung biopsy. Apparently she woke up well also. All her stats were back to previous (good) levels two hours after surgery. Anaesthetist checked up on her before he left, said it was a tricky procedure under the circumstances but she did well.

    It's the best we could have hoped for, for now.

    They now have the last specimens they're likely to need, to nail the diagnosis down firmly.

    We've made contact with doctors associated with the top transplant teams in Sydney, so depending on what results come through next week from this biopsy, we're in a position to kickstart J onto the waiting list, if she's a candidate. And if her current specialist says she's not a good candidate, then this contact will be the next opinion.

    Having come through this surgery so well, is a good sign for her possibly being an OK candidate for transplantation after all.

    We just have to hope she stays in good enough condition until the chance comes. If it comes.

    More family are arriving, we're trying to gather information. It's a stressful time for everyone. But it shows we're pulling together as a family.

    Thanks, team.

  6. Hound dog

    Hound dog Nana's are Beautiful

    Your sister sounds as strong as you Marg. I'm both glad and relieved she was about to come thru the biopsy well.

    Still praying hard.

  7. busywend

    busywend Well-Known Member Staff Member

    Marg, still praying for your sister. What a horrible ordeal for you all. I hope you get answers soon.
  8. house of cards

    house of cards New Member

    Adding my prayers for your sister and for all the family members. I'm glad to hear you are all pulling together during this ordeal.
  9. TerryJ2

    TerryJ2 Well-Known Member

    Many hugs, Marg. I think about you a lot.
  10. gcvmom

    gcvmom Here we go again!

    Still hoping for the best possible out come for J... you're all doing such an amazing job advocating for her. Stay strong!
  11. timer lady

    timer lady Queen of Hearts

    Marg, sis continues to be in my thoughts & prayers.
  12. ML

    ML Guest

    marg I am sp sorry. I have been so busy away from the board that I'm just finding out about this. Know that my prayers will include sis now as well. Thinking of your family during this time. Love, ML
  13. Marguerite

    Marguerite Active Member

    We're about to go visit her today, although we have other errands to do first, in the opposite direction. We'll update tonight when we get home.

    I got a text message last night that said she was a bit more alert after the surgery (open lung biopsy) so I'm wondering if they've lightened up on her sedation, which could be an indication they're trying to wean her off the respirator again.

    I'll know more after I've talked to the family and we've seen her.

  14. Marguerite

    Marguerite Active Member

    OK, we're back.

    J was definitely doing better this afternoon. I was the only visitor while I was there and she mostly wanted to sleep, so for a while I just held her hand. She waved hello to me when I arrived, clearly recognised me. Then she mostly sat and either closed her eyes or watched the TV (up high on the wall). The nurse had to talk to her a few times, asked her if she wanted a pillow behind her head, or to leave the towel - J was able to make a decision and indicate to leave things as they were.

    When I was there on Tuesday and J had tears in her eyes, or was drooling, we had to mop it up for her. Today she was in a mostly sitting position and had a box of tissues in her lap. She could grab a tissue, mop herself and then put the tissues in a bowl on the table.

    She's in the best bed, literally, in ICU. It's valued at $75,000 we've been told, and it can turn into just about anything. This way they can get her sitting up as if in an armchair, or lying down flat, or tilted tis way or tat. They can turn her around, roll her onto her side - it's amazing. And it means they don't have to move her.

    They're getting her sitting up as much as they can so they can get her lungs working a bit better, they're hoping to get her off the ventilator. W isn't so sure this will be possible, she's seen the CT scans tat show that both lower lungs are "white-out" and most of her middle lobes, while her upper lobes are 'starred' with fibrotic tissue.

    The biopsy results will be available by Monday, I heard one nurse say to another. But we've been told mid-week. W said tat the specialist wants to get the early results then send the tissue samples to another lab, a specialist respiratory pathologist, to make absolutely certain of the diagnosis. But for all of us, the working hypothesis is respiratory fibrosis.

    The nurse tilted J's bed back a bit because as she dozed, her head was lolling and they felt this wasn't good. So they eased it back a bit (to about 60 degrees) and she seemed to doze off more soundly. So I tiptoed out - she's still on medazolam, so she won't remember I was there anyway.

    I rang husband from downstairs - he'd gone to a nearby coffee shop to wait, so while I waited for him to come get me, J's daughter happened to arrive and we got talking. I'd been hoping to talk to her, the poor girl is frantic to help her mother and has been trying to insist she be moved to the major transplant hospital in inner Sydney. I wanted that too, until I saw how well they're looking after J where she is. So I reinforced this with her, that the transplant hospital is aware of J and if/wen it becomes the better place for her to be, the transfer will happen. But until then, she is better off where she is, where she doesn't even need to be moved from the bed, to get all the care she needs.

    J is still being specialled, in a room on her own with banks of machines and dials, tubes everywhere and the nurse permanently stationed in the doorway at a desk, always noting her levels on the machines and coming over instantly a bell rings or the nurse sees J struggling, or fighting the ventilator. That didn't happen while I was there today.

    J's daughter (and W, earlier) said that they're trying to get J off the ventilator over the next ten days. I'd love to see that but I'm not hopeful, frankly. But she definitely is stronger than she was a week ago, when we were told she was too weak for a lung biopsy. Now she's had that biopsy and seems able to do more for herself.

    She's still blown up from the prednisone, very puffy. The nurse told her to keep moving her hands so she can work the fluid out of them, but I think they need to keep reminding her.

    We're hoping that the provisional diagnosis is wrong, and that it's something reversible. J's daughter said she's still going to insist on a second opinion, I suspect especially once we get a diagnosis. She won't accept a death sentence for her mother. Personally, I think she needs to save the second opinion for eligibilty for transplant. I think we're going to need it.

    Our main worry now, is that she has been/will be deteriorating fast, so fast that she will be too weak for transplant by the time they put her on the list. The current improvement has given us a little hope.

    Thanks for caring, everyone.

  15. klmno

    klmno Active Member

    Still keeping fingers crossed for you, Marg, and hoping for the best.
  16. TerryJ2

    TerryJ2 Well-Known Member

    Sigh. Thank you Marg.
    Many hugs.
  17. GoingNorth

    GoingNorth Crazy Cat Lady

    ****...Marg, I was afraid it was respiratory/pulmonary fibrosis. husband died of it, and when you described her chest xrays, I just had a really bad feeling. If it is, then yes, a lung transplant is the only option.

    husband was too sick with his other disease (myelodysplasia) for which he was waiting on a bone marrow transplant, for a lung tx to even be considered.

    We don't even know WHAT causes PF beyond it usually being an autoimmune response to some sort of "insult" to the lung system.
  18. KTMom91

    KTMom91 Well-Known Member

    Still saying prayers for your sister, Marg. Sending hugs to you and the rest of the family.
  19. Marguerite

    Marguerite Active Member

    As far as insult to her lungs - not that it matters now, but she was about 6-8 weeks premature (back in 1948, when there was a lot less that could be done) and was a sickly child. Her twin sister (not identical) was full-term. Go figure. There is another set of twins in the family, older - I found out only a couple of days ago that one as also underdeveloped and a bit premature compared to her twin brother. They were born during WWII. I'm postulating our mother had a double uterus.

    J was prem, as I said. She had encephalitis at 3. Rheumatic fever at 5. I remember her getting her appendix out at 15, us all getting mumps when she was 14, chickenpox when she was 16.

    In recent months she was taking those pills which are made form cow colostrum, despite believing herself to be allergic to cows milk. She was also having yogurt for breakfast every day. We've been told that worrying about the cause now is pointless, yet they're still asking us questions about her exposure to dust.

    As far as exposure to dust - they recently were renovating and removed an old fibro shed from their backyard. There may have been sanding and sawing of fibro going on, but she wouldn't have been doing that. There was that bad dust storm in Sydney about last October/November when the sky turned blood-red for several days. Infection - she was definitely exposed to both whooping cough and mycoplasma at easy child's wedding last May.

    So we've been thinking - her lungs are her weak point (as they were with our mother). She may have picked up the infections from husband & difficult child 3 in May, I don't think I would have still been infectious in October but she could also have picked up whooping cough from anybody, although her husband does not report a typical cough. The building dust plus dust storm dust plus possible overactive immune system could have been combination triggers. Our main concern re triggers, is to make sure that first, she's not currently exposed to them (as far as we can ensure) and that if she gets a transplant, her new lungs wouldn't be similarly assaulted. But she would be on immunosuppressants, so there should be less problem. Plus I would hope that she wouldn't take anything, not even a vitamin pill, without her doctors agreeing.

    But that is currently academic - she's not yet on any transplant list, her diagnosis is still unofficial. But we're almost certain that the immunologist was right.

    We've been told the current problem is not immunological. If it were, she would probably not be able to be a transplant candidate. So we hang on to that.

    It will be at least 24 hours, probably 48 or longer, before there is any news from pathology. All we can hope for in the meantime is that she holds her own (or improves at least a bit) and that her kids and husband don't get into any arguments. Things aren't perfect there - her kids are naturally frantic, but her husband, despite being a control freak who is currently not able to be in control, is actually making the right decisions and the kids don't always understand or agree. He's their stepdad, although my sister and her husband are on good terms with her ex.

    Keep us in your thoughts. She's holding her own.

  20. GoingNorth

    GoingNorth Crazy Cat Lady

    marg, you and your family are always in my thoughts. Please try to take care of yourself as best you can.