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.
Marg
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.
Marg
