She also posted today in another thread about another unrelated topic, so she is apparently still holding steady and has no other news about the hospital & Steve.
To see posting history, just click onto a poster's name. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Anxiously waiting to hear also...
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Bea needs help finding a direction to look in to find out what is wrong with Steve.
So far nothing has come back with anything the doctors can hang their hat on.
She is requesting hematology consult and asked their LLMD be brought it. No response from hosptial doctors yet.
I asked her if she would request a parasitologist.
She told me this morning that Steve spiked a fever again.
IV Diflucan and vancomycin were d/c'd.
The Zosyn still on.
Mepron and azith on until Wed.
They reduced the NO today. (do you guys know if that's normal?)
She's been trying to get lab reports. It sounded like everything is on computer, so you have to wait until the file is uploaded.
She's waiting to get clongen report, it's suppose to be back now.
I wish Roanoke would call in other consults if they are stuck and can't figure it out....Steve's life is hanging in the balance here...
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Bea,
I am just wondering since Steve tested positive for something similar to strongyloides, whether the docs might be open to testing him again for this infection.
I am just thinking that if he tests positive and they treat him with a strong combo of antiparasitics, it could also hit any Babs that might be there.
Just thinking of another angle here. been watching and reading the threads and praying for you both.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Has anyone called Clongen and demanded the analysis be completed ASAP given the urgency. This lab can't get that many blood smears/tests that have this incredible level of urgency. Like ERs, this one needs to be pushed to the top. I can't imagine what could hold it up.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I was also curious if there was any way Dr. K in WA could help???
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Well, do you want Clongen to do the best job they can or a rush job? If they are looking really hard at a blood slide, it takes time. They know this is urgent, so there is no point in hounding them.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Bea: I Googled "parasites that cause pulmonary failure". Wiki was the first link that came up. Wiki is not a validated source, but it's often a starting point:
Case study on page 190, gender/age don't match Steve, but do any symptoms...?
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
a mom, I really think at this point that Bea needs to write a strong letter to the CEO of the hospital--cc'ing the CFO and the chiefs of ID, and whatever other services have visited Steve, along with any other department she has requested a consult with, such as hematology, as well as the TV station that aired the interview.
She needs to state that given the circumstances, it is quite appropriate to have Steve's LLMD involved in his care, that his slides need to sent to the doc at Columbia ASAP, etc.
Bea is a great writer and I know she can do this. In fact, I'd much prefer she do this than take time to update us here.
"They" will only do so much when you make an oral request. Our spoken words dissipate into thin air and as far as anyone is concerned, you might not have ever uttered them.
But once you put something in writing, it's a record and it is there forever. And my advice would be to send everything either via email where you can document that the recipients received it or send the letters via certified mail, return receipt -- preferably using both methods.
And, I would encourage her to also cc a law firm.
Oh, and that is total BS about the wait time on his hospital labs. The vast majority of labwork done in a hospital is available within a couple of hours, with the exception of cultures or other labwork that has to be sent out to specialty labs. If you have cooperative/friendly docs, they will go up to the nurses' station and just print them out for you. If you don't, you can go to medical records to obtain them.
Can't help feeling like they're jerking her around.
Bea, in addition to speaking with all these people, please put all your requests in writing from this point forward, and also document each conversation.
Your pen is your sword.
Posts: 1885 | From here | Registered: Jul 2012
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posted
Bea: is anything sounding familiar in the searches? Are there other key words you would like help searching?
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Tularemia...causes fibrosis and pneumonia...it's impossible to culture due to risks to lab personnel.
"Causes of mortality in patients with Adult Respiraotry distress syndrome"
"Our findings indicate that sepsis syndrome, rather than respiratory failure, is the leading cause of death in patients with ARDS"
----
From online medical dictionary:
sepsis syndrome
A constellation of signs, Sx, and systemic responses caused by a wide range of microorganisms that may eventuate into septic shock; SS is a systemic response to infection
Sepsis syndrome, defining parameters * Temperature Hypothermia < 35�C-96�F or hyperthermia > 39�C-101�F * Tachycardia > 90 beats/minute * Tachypnea > 20 breaths/minute * Site of infection Clinically evident focus of infection or positive blood cultures * Organ dysfunction 1+ end organs with either dysfunction or inadequate perfusion or cerebral dysfunction * Metabolic derangement Hypoxia-PaO2 < 75 mm Hg, ↑ plasma lactate/unexplained metabolic acidosis * Fluid imbalance Oliguria-< 30 mL/hr * WBC counts < 2.0 x 109/L; > 12.0 x 109/L-US: < 2000/mm3; > 12 000/mm3
Note: The confusing semantics of the terms sepsis, sepsis/septic syndrome, and septic shock are unlikely to be resolved in the forseeable future; the terms sepsis and septic syndrome are essentially interchangeable and would in part overlap with septicemia-the early components of a pernicious infectious cascade that has spilled into the circulation; the term septic shock is used when the process becomes virtually irreversible
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I understand what you're saying. This is a unique situation. Of course, you would want a lab to do the best job possible and spend adequate time to do a thorough review. I meant if there were 10 tests results to complete, I'm hoping this request is accelerated to the top of the list from a priority perspective as a man's life is at stake and timing is extremely important.
Every test that comes through is important, but I would venture not many are this time-sensitive. I hope that makes sense. I think anyone waiting for their test to be resulted would agree. That said, this may be what Clongen is already doing. I would just double and triple-check to be sure.
quote:Originally posted by poppy: Well, do you want Clongen to do the best job they can or a rush job? If they are looking really hard at a blood slide, it takes time. They know this is urgent, so there is no point in hounding them.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It's a moot point now, but, seek, Dr. K at Clongen was very aware of the situation, was doing everything possible to help, including praying, so don't bash or hound the lab! I know you meant well on this. He's a very caring and knowledgeable guy. Just so you know.
It's unbelievably sad. It also really makes me angry (that the hospital docs were so recalcitrant, etc).
Posts: 3771 | From around | Registered: Mar 2008
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