My sister's dying - ideas please!

Discussion in 'The Watercooler' started by Marguerite, Mar 14, 2010.

  1. Marguerite

    Marguerite Active Member

    Hi guys.

    Sorry to dump this load on you, this all blew up a few days ago.

    Last Wednesday one of my sisters rang to tell me another sister (her twin) was in hospital in intensive care. Apparently when I rang around to let my sisters know about my breast cancer (since I'm the youngest, so they need to really get checked out) this sister, J (we'll use alphabet to help out - there are a lot of siblings!) had been suffering from breathing problems for some time. Her twin, M, said J & her husband were visiting them in the mountains inland from Byron Bay, soon after easy child 2/difficult child 2's wedding in October. The doctor is apparently interested in the location inland towards the mountains, and not by the coast. M's farm has rainforest there.
    Apparently while staying there, J was finding she was getting breathless swimming one lap of the pool. She thought she was coming down with a cold and didn't think anything of it. But her husband says she's been unwell ever since, and seemed to be getting sicker in the last few months. Like a flu with breathing problems, getting worse.

    When I rang a few weeks ago to let her know about my cancer, she didn't tell me that she was on prednisone to try to ease the breathing. She is not a complainer (she should be, though).

    Last Monday she couldn't get out of bed (not like her - it runs in the family!) and Tuesday, she said to her husband, "We need to call an ambulance."
    She's currently in a private hospital, near a major public teaching hospital in Sydney.

    When M rang last Wednesday (I was at the beach, but having to field a lot of calls) she said to not worry, J was in intensive care but only because they were puzzled. She was on oxygen to help her breathe, they'd put a tube into her chest and aspirated 500 ml of fluid, so now she was breathing more easily. M said to not worry, she kept repeating it. She sounded calm about things, said J was now in the best place. I am certain M was convinced everything would be OK now. M was calling from home, she can't easily leave the farm.

    When I got home I began making calls. I didn't ring J's husband, I figured he had enough to worry about instead of fielding calls from a lot of siblings. So I've been trying to stay updated by ringing my other sisters (including another, W, who lives near J). W is a retired paramedic, she's been going to the hospital with J's husband and kids. But I often couldn't raise anybody, and with husband & I needing to have evening meals with mother in law, it meant when they tried to ring us, we often weren't here.

    OK, now she's a lot worse. CPAP was the "oxygen mask" M told me about. On Saturday night I found a message form M on my mobile phone, too late to call her back. Next morning I had to leave early, I planned to call M once I was on the road and able to use hands-free. But she beat me to it - M was in tears, her twin sister is dying and the doctors say they don't know what is wrong. M said, "She's now on a ventilator, the doctor says her lungs are inflamed. it's not bacterial, it's not fungal. her lungs keep filling up with fluid. She's sedated and mostly sleeping, but is aware when her family visits (max two at a time). I haven't been able to go see her - too many people already, her husband and kids have priority. And her twin, now in Sydney but having to go back to the farm tonight.

    We've been asking ourselves, "What could it be?" and we're stumped. What is worse, the doctors are stumped. They've come back to us and asked us for ideas. They want to know what she's eaten, where she's been, for the last six months. Anything at all.

    Obviously none of you know any of this. But I'll tell you what I know in case you have clues.

    So here goes -
    Our family has a history of allergies and sensitivity reactions, including cows milk allergy. J herself was wondering if she had a gluten problem plus cows milk problem and had recently switched to soy milk. Her husband sells 4Life "transfer factor" which is basically cow colostrum in a pill form. I gather she's been taking lots of this, increasing as she felt sicker. The doctor has been told this and has discounted it. I have also asked them to consider the possibility she was taking bee products. She was seeing a naturopath in recent months.

    M mentioned the first symptoms of breathlessness in October at her farm in the hinterland of Byron Bay. She then mentioned that they were in Port Macquarie for Christmas. We have our eldest sister living there. I then had a brainwave - husband, difficult child# & I were in Port Macquarie last July, we went for walks by the river, at the Koala Hospital and at Sea Acres, a wildlife reserve full of native rainforest. All three places were loaded with Flying Foxes - our large fruit bat. If you've seen "Fern Gully", we're talking Robin Williams' character, Batty. Also, Fern Gully location is where M lives.

    Our Flying Foxes are getting a reputation for carrying some unusual and not well identified diseases. That possibility has now been put before the doctors, I thought of it while on the phone with M.

    Other than that - we're looking at alternative medicine possibilities, the chance that she may have been taking something that she has suddenly developed a sensitivity to (due to daily dosage/repeat exposure).

    Over the last few days they have hit her with massive doses of prednisone to try to save her life. Today is the last dose. They said if this doesn't work, the only thing that can save her is a lung transplant, but because she is so weak now, she is a poor candidate.

    I know I'm asking a lot, but if you can think of any possibilities, I'll run them past the family and see if they're likely.

    Also - on the bat theory, it is possible (with the increase in population of these bats in Sydney) that she has even been exposed at home. They are close to a flight path of a large colony that flies at night to raid the orchards outside Sydney. Her immune system has been compromised because of the prednisone she's been on for months (lower dose, of course, that the last three days' massive slug of it). Until now I don't think authorities thought people could catch anything direct form Flying Foxes, although that possibility is being considered likely (for people in general). But usually you have to have a compromised immune system to be vulnerable. And she has that.

    She's never smoked. Drinks lightly. Never used drugs. Very health-conscious. Medium build, not overweight.

    I'll keep watching here for ideas. So will husband.

    Thanks, guys.

  2. tiredmommy

    tiredmommy Site Moderator

    I'm so sorry... what a terrible situation for everyone involved! Her lungs are inflamed... but how about her bronchial tubes? Could she have inhaled a toxin or irritant? Does she swim, garden, etc?
  3. Hound dog

    Hound dog Nana's are Beautiful


    Any possibility she stumbled into the bat's dung? Or perhaps inhaled it?

    Lots of natural products can cause some pretty serious reactions......especially with certain medications. (I'm learning that now and have decided I'm not taking anything herbal again until I've consulted my PDR) Can you get a list of things given to her by the naturalist and give the docs a list of her medications to make sure nothing is interacting?

    Have they searched her body for anything that looks like a bug bite?

    Sounds like an awful long onset for anaphylaxsis though. Unless it's something she used, ate, drank, was exposed to repeatedly over the days within the time frame she started having trouble breathing.

    When Nichole was very small she got stung by a bee. She had a pretty bad reaction, but did not have any respiratory symptoms. A week later another bug got her, definately not a bee.......and we had her in children's for anaphylatic shock. doctor said the less severe bee reaction had primed her immune system which is why it over reacted the second time. All that summer she was one big reaction waiting to happen.

    I'll think on it and flip through my pharm book (studying for finals anyway) and try to think of any other possibilities.

    How scary!! Saying prayers for your sister!!

  4. ThreeShadows

    ThreeShadows Quid me anxia?

    Marge, have they checked her for parasites?
    Could you provide a better history such as fever, pain, sputum, location of the inflammation in the lungs?
  5. Marguerite

    Marguerite Active Member

    Thanks, guys.

    We're certain it's not acute - onset has been over months. I have askedd that her doctors be given ALL information of what the naturopath has given her, plus I am certain she was taking the "transfer factor" capsules from before she became ill. Her husband sells these; it's one of those direct marketing schemes, so he has a strong vested interest to say, "It can't be that," and to downplay it, but W (paramedic sister) & M were both primed by me to 'dob them in' over it. I was hoping it could be a viable option, the doctor doesn't think so. I'm still not convinced.

    When W mentioned the pills to J's husband, he got very curt with her. Of course he has to devalue this suggestion because the possibility is just unthinkable for him.

    J & her husband both 'pushed' these pills onto me. They've doe this with other members of the family too. But I did a lot of research into the stuff, as well as already having my own experience with REAL Transfer Factor. Basically, real TF is made from human blood donations, it is an extract of human T-cells and needs to be injected i.m. in order to be taken up by the body in any useful form. It's like a lot of immunisations - nobody wants to stick a needle into a baby, but with a lot of 'shots', that is the only option. it would be cheaper and gentler to give a pill to babies (or like the polio vaccine, a few drops of syrup in a spoon) but in most cases, the stomach acids would break down the proteins and nothing of any immune value would get absorbed.
    The "transfer factor" J was taking is made form cow colostrum and is taken orally. Therefore it's little more (to the stomach) than cow protein. Nothing of immunological value would get into the bloodstream, stomach acids would break the proteins down to their constituent amino acids.

    So in terms of harm - minimal. Unless you have an allergy, or develop one. I've asked M to ask J & her husband if J at any time took any bee product.

    They are of course thinking about bites & stings. J likes to work in the garden, but it is not overgrown, it is a lovely suburban small garden, well-established, neat and tidy. Mostly European plants. The only things I could think of biting her there that are dangerous wouldn't have such a slow run-up time. Plus she would have noticed, surely.

    Bites and stings of a less noticeable nature make me think of arboviruses - we have a few nastier ones than Lyme Disease. Lyme is bad enough, of course, but doesn't generally cause lung failure. But the main Aussie ones I can think of don't lead to this degree of collapse.

    I did some digging online last night, her symptoms seem to match ARDS.

    3S, you asked for more detail - to answer your questions as far as I can, I don't know about any fever. She may have some fever now, I'm not sure. But her breathing has been getting slowly worse with no fever, I believe.

    Location of inflammation - alveolar certainly, possibly bronchial as well. Pain - I believe she is comfortable. Her difficulty breathing and extreme weakness (plus low sats) are the main presenting problems. But so severe, they say her lungs are failing fast.
    Sputum - I think she's now too weak to cough. I believe she was producing buckets of mucus, they drained off a lot of fluid from her lungs. Nothing cultures though.

    No more news so far today from the family. M will be heading back home now. I'll call W tonight, she will be at the hospital right now. And if I know W, she will be asking some probing questions and wanting answers.

    Hopefully by now they have got the immunologist in. I really hope they transfer J to the public hospital, it is huge and they have resources beyond belief. Possibly the concern has been, how do you transfer a patient who is on a respirator and extremely weak?

    I'll update as soon as I know anything.

  6. gcvmom

    gcvmom Here we go again!

    What does her bloodwork show? Any signs of infection? They've checked her heart? Taken a lung biopsy?

    Here are some non-cardiac causes of pulmonary edema listed by the Mayo Clinic:

  7. gcvmom

    gcvmom Here we go again!

    What about hantavirus? The antibodies for this has been reportedly found in some Autralian rodents, although there have not been cases of the disease contracted in humans yet (as far as I could find in my brief internet search). It's been the cause of a number of deaths in the U.S. Here's the info on it:

    It's possible she contracted some kind of animal (zoonotic) disease?

    How about this info?

    I'm so sorry about your sister, Marg. I hope they can save her.
  8. pepperidge

    pepperidge New Member


    I had a bad case of recurring tick fever a couple of years ago. I did not know I had been bitten by tick. In course of week, I started feeling sick (like the flu), could barely walk, my lungs started filling up with fluid. First they thught I had pneumonia. They got lucky with infectious disesase doctor who looked at blood smear and happened to see the little bugger parasites or whatever they were. I was started on simply antibiotics, but while getting well my blood pressure had plummeted, my lungs were totally filled up with fluid, they were about to put me on a ventilator, my hemoglobin levels collapsed. But I was well utlitmately within a couple of weeks.

    Sounds something like what your sis is going through. I would be after them to check with infectious disease doctor.

    I am so sorry for your familyl. Hope they figure something out.
  9. Marguerite

    Marguerite Active Member

    Bloodwork all negative for anything abnormal. No sign of infection. Heart - OK as far as we can tell, although she has had some problems in the past with heart electrics needing to be worked on (she had some sections 'burned out' in order to keep the pacemakers working properly). Last one of these was some time ago, they know about it and don't think it's relevant.

    Lung biopsy - they haven't done it, they would need a general anaesthetic and they say she's too weak for it (which could also be why a lung transplant is unlikely even though they are beginning to think it's her last chance).

    I'll look up hantavirus.

    This has been long-term in development, in some ways. However, we do have to keep in mind that there could have been a pre-existing condition and something acute could be piggybacking.

    Thanks for the ideas. I'll pass them along.

  10. Marguerite

    Marguerite Active Member

    Hantavirus - not in Australia, according to Wikipedia. And she's not in renal failure - yet. Respiratory is the main problem.

    Hopefully after my suggestion earlier the doctor is already checking out bat virus - here is a link.

    We're sure there are more of these diseases, we're still trying to identify them.

  11. timer lady

    timer lady Queen of Hearts

    Marg, I'm so sorry to hear of your sister's illness. Will be keeping her & your entire family in my prayers.
  12. SRL

    SRL Active Member

    It's always a good idea to take known range with a grain of salt. Anecdotally people in the US are getting Lyme in states where there isn't supposed to be any.

    There was a long article on animal to human diseases in National Geographic a few years ago. Here's the link in case it will trigger something:

    Because this kind of lung response can be due to toxins, it also might be good to look further into those pills to see if they--or components--were manufactured in China or another country with common quality control problems. I had a friend who was ordering a lot of unusual homeopathics and at one point ordered directly from China. A package of pills arrived in a big plastic ziplock bag with no identifying information on the pills themselves or the packaging.
  13. Hound dog

    Hound dog Nana's are Beautiful

    I'm also beginning to strongly suspect the Transfer factor pills. Unless they can find something else new to look at. Or perhaps the Transfer Factor maybe in combination with something the naturalist gave her. Why? Simply because she had no fever and her other blood work is normal. Have they tested her IgE? (blood/allergy) You can have minor allergic reactions to something over a longish period of time, then suddenly your body gets kicked into high gear and goes all out on the attack. It's not the usual case, but then we're not talking about a usual case scenario here.

    Most viruses, bacteria, and fungi cause fever, even if it's low grade. I'd be thinking with any of those she'd be burning up by now.

    I'm with you. I hope they can stabilize her and transfer her to the teaching hospital.
  14. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Sorry no ideas but want you to know I am saying prayers for your sister.
  15. busywend

    busywend Well-Known Member Staff Member

    Marg, I have no ideas to share, but wanted to let you know I will say some prayers for your sister.
  16. Marguerite

    Marguerite Active Member

    Good point about the source of those pills, SRL. I'll do some digging. The trouble is, where they say the pills are made, and where they really are made, may not be the same. Plus what they say is in the pills, may not be the whole story.

    Sister in Port Macquarie says J was unwell when she was there just before Christmas. She has been unwell for over 6 months. Plus she was in Port Macquarie before she visited her twin - that visit to Byron Bay was in January, not October.

    Our mother had bad asthma, my Port Macquarie sister is remembering how every time our mother had an allergic reaction, she had a chest response and often needed an injection of adrenalin to save her. My sister remembers having to inject mum (my sister was 15 at the time).

    I found out tonight, J had a lung biopsy about three days ago. I don't know what they found, but it did cause a pneumothorax. She's had the chest drain removed this afternoon, they were hoping her lung would now stay inflated. I don't know if pneumothorax was an inevitable result of the biopsy. If it is not, I will be campaigning even harder to get her shifted to the large teaching hospital. The last thing she needed right now was to have an unnecessary collapsed lung as well.

    We also believe J was taking a booster of these pills for some months because she has been unwell.

    The more we talk about it, the more I think this pill business has to be kept on the table. The trouble is, the doctor says he's already considered this possibility and rejected it. We think it needs to be reconsidered. I have asked - how recently did she take the last pill? Was her husband dosing her while in hospital, in the belief that it has to be a help? What about the tube-feeding, does the supplement they're giving her contain anything that could be perpetuating an allergic reaction? Apparently not, we've been told, that question did get asked.

    As I'm drafting this reply, I'm digging. I just got off the phone from Port Macquarie, my eldest sister there agrees that the pills (for whatever reason) seem the most likely suspect, if only for the timing factor. However, I'm now putting together a list of possibilities, I'm going to try and visit J tomorrow and see for myself (and find out for myself) instead of this second-hand/third-hand Chinese whispers game.

    Hantavirus - I'm reading up on it now. Protein-rich oedema - I'll have to ask about the analysis of what they drained. As far as I know, her other organs are OK, other than possibly developing problems due to impending respiratory failure. Her kidneys are, I believe, OK. So it's not a generalised leaky capillary problem, which you would get in Hantavirus. However, incubation with Hantavirus is only a matter of weeks, and she's been sick, getting slowly sicker, for months. She also has had no other prodrome other than difficulty breathing.
    So I don't think it's Hantavirus, specifically. It is still possible it's some other zoonotic disease, especially considering that like Africa (but perhaps to a lesser extent) Australia has some unique and still undiscovered zoonotic diseases.
    That link you sent - that was referring to Hendra virus (as it's commonly called, after the town where horse trainer Vic rail lived, where he contracted the disease that link describes). That was what I was thinking about - Hendra virus is a very recent discovery, they're fairly certain it's Flying Foxes (other bats also carry diseases, scientific researchers and zookeepers are having to take a lot of precautions). There is also Lyssavirus. They keep finding more. The location for Hendra virus is geographically quite close (well within Flying Fox range) to where M's farm is. Plus Flying Foxes sometimes migrate further and join other colonies, the Port Macquarie colony could easily contain bats which once lived near Hendra.

    These are still rare diseases, but her immune system could have been weakened for all sorts of reasons (including those darned pills). husband & I have often been around bats. YOu can't live and work in Sydney without some level of contact. They fly overhead, and you're of course in contact with droppings. Right in the heart of Sydney, there is a huge colony. They leave Sydney Botanic Gardens every evening (you see them rising like smoke from a fire) and I've seen them arriving to feed in the Port Jackson Fig trees at Sydney University. difficult child 3's school is a few seconds' flying time from the big colony too. So we're regularly exposed. Plus we have some here in the village now. J's place - W, who lives near her, says they see bats every night now. So if she sees them, J & her husband will see them too.

    Anyway, the doctors already have the idea of bats on the table. Thank goodness.

    Now, SRL, for your link on zoonoses. by the way, thank you for all this - it is exactly what I was hoping for. I was discussing this with W and PM sister both, they both have some medical training.
    OK, zoonoses - for those unsure, these are diseases that people can catch that are carried by animals. Not just parasites, but other diseases such as toxoplasmosis, avian flu, swine flu.
    OK, immediately I see one good point - J has been sickening for months, yet her husband is symptom-free. I think that could be a significant point.
    Hendra virus in this article is being discussed - they mention that Vic Rail (don't know why that article doesn't name him) died of kidney failure, with respiratory failure. As I said, her kidneys are fine, as far as I know.
    It also can be more complex than just bats - some scientists believe that Hendra virus doesn't come directly from bats, but has to be caught from a horse that has caught it from a bat.
    Bats seem to be a worrying reservoir for an unknown number of zoonotic diseases. Thankfully we don't have rabies in Australia, but we do have Lyssavirus. Thankfully, this isn't Lyssa. There are no brain symptoms.

    I've just been searching online for adverse reactions to "transfer factor". I'm talking about the kind from cow colostrum taken orally, not the injected human-origin TF. I can't keep searching now, I need to let difficult child 3 onto the computer to hopefully do some homework.

    Something else I'm curious about - how 'legit' is the Herxheimer reaction? I suspect it is legit, but it's blown out to the point where Herxheimer reaction is being blamed for what could be genuine adverse reactions on a much broader scale. It is an easy 'cop-out' for scam companies selling highly overpriced and ineffective alternative remedies.

    I'm not saying that all alternative remedies are scam - only that unfortunately, the system is rife with exploitation, which damages the reputations of genuinely helpful stuff.

    I've got to go, but if I get a chance I will check back later tonight (my time). Certainly tomorrow morning before we leave.

    Thanks again, guys. Keep those thinking caps on!

  17. DDD

    DDD Well-Known Member

    Sending caring thoughts your way. I am not at all knowledgeable about medical issues, except for those our family has faced. As usual the CD family includes people who are capable of responses
    worth reading. I'll remember you all in my prayers. DDD
  18. gcvmom

    gcvmom Here we go again!

    Can they have one of the supplement pills she's been taking analyzed?

    I'd really, Really, REALLY be pushing to get her transferred to a larger hospital.
  19. Shari

    Shari IsItFridayYet?

    I have no additional info to add, just a prayer, Marg.
  20. Star*

    Star* call 911

    Has she had a skin test done for histoplasmosis?