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» LymeNet Flash » Questions and Discussion » Medical Questions » URGENT: Update from Bea about Steve:NEEDS PRAYERS 10/6

   
Author Topic: URGENT: Update from Bea about Steve:NEEDS PRAYERS 10/6
Dekrator48
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I copied the 2 last posts that a mom posted after she talked to Bea. I'm putting this in Medical for now so everyone will see it:


posted 10-06-2012 11:34 AM
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HELP!!

Bea called and asked me to post a New Thread. I don't know how to do that. Can anyone start a New Thread for Bea's info:

Steve is dying from ARDS or lung failure from unknown causes. Docs think his heart will give out but can't say when. For example something as simple as turning him over in bed can cause his oxygen levels to fall -- even on a ventilator at maximum (100 % oxygen).. Other times his heart rate slows to dangerously low levels instead of the oxygen falling.

The docs are pushing for me to change Steve's code status (now at full code) or even to pull the plug on the ventilator. Undecided what to do about code status right now -- but pulling the plug is NOT an option at this time.

I am trying to decide what to do next to help Steve.

Once I get the Clongen blood smear results I need to come up with a new plan of action.

Addendum:

Babesia meds are still on, WBC down to 11,000. She did not say if he had fever.

Bea is trying to reach a doctor Dolores recommended: Dr. Thomas W. Nash (Columbia Presbyterian). Pulmonary and ID.

Bea called, but office was closed. I sent an email for HELP. Is anyone friends with him and could reach him for Bea?
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a mom
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posted 10-06-2012 11:34 AM
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Prayers needed please. When I called Bea, the Pastor was in the room with them.
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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

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Tammy N.
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Thanks Dek, I was just about to do this myself.

Dear Lord, we pray that you are right there in that hospital room beside Steve and Bea. Please give comfort, wisdom, peace and clarity to all who enter that room. If it is your will, please Lord, provide the answers needed to bring Steve back into health and wellness. We pray for a miraculous healing. Please lay a heavy blanket of love and peace over Steve and Bea to see them through this most challenging time. Amen.

Moderators - could you please consider leaving this thread in Medical Questions? The more people see it, the more much-needed prayers will be offered.

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Dekrator48
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Praying and praying....fervently praying for Steve and Bea.

Lord, please hear our cries for help and heal Steve.

I ask this in the name of the Father and of the Son and of the Holy Spirit. Amen

--------------------
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

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map1131
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Prayers this is a herx reaction from adding the abx back into Steve's system and not as serious. Prayers for Bea to get some answers and help quickly.

Pam

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"Never, never, never, never, never give up" Winston Churchill

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FuzzySlippers
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First of all, Bea does NOT -- I repeat -- does NOT have to pull the ventilator nor institute a DNR Code if she feels it's not time to do so.


She should keep in mind that the hospital at this point, especially when they are losing money with his case, will not always have his best interests at the forefront.

They are probably getting all kinds of pressure from hospital Administration and Medicare because of the length of his stay already.


I'm just assuming it's Medicare. It doesn't really matter what the insurance is. They all start to ask questions and place pressure on hospitals when hospital stays become extended.


For example, Medicare stops reimbursing hospitals on alot of things after only five days of a particular patients hospitalization.


Anyway, the ball is in Bea's court right now. If she needs more time to make a decision on behalf of Steve, then she should take that time.


Prayers are being offered up.

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linky123
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Praying.

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'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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poppy
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If this is a babesia herx, it may get better by itself, if they can keep him alive. No one really has a good solution to herxing.

But babesia meds, like malaria treatment, can cause hemolysis, which has pulmonary consequences when enough oxygen cannot be carried by the rbc's that are left. My feeling is that when people say they have a babesia "herx," this is what is happening. It looks like what they need to do is mitigate this effect until he is stable.

In short, babesia causes hemolysis and so does the treatment.

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poppy
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Have they considered plasmapheresis?

http://www.ncbi.nlm.nih.gov/pubmed/9590496

Can someone be sure Bea gets this message? If she needs a new plan, this might be one, especially if she gets any support from the Clongen slide results. Even if she doesn't.

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randibear
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i am so very sorry for all this. only by the grace of God go i...it could be any one of us.

i pray that he gets better and God gives bea the strength to persevere through all this. i could not be so strong.

know that we all are with you bea.

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do not look back when the only course is forward

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FuzzySlippers
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I wanted to add, too, that while I suppose I may be missing something here, I guess I didn't realize that doctors and hospitals were in the business of advising patients' families to pull the plug, or otherwise to authorize a DNR order where the patient in question (1) isn't clinically "dead," in terms of brain function; or (2) isn't otherwise terminally ill.


In this case, it's my understanding that the doctors can't say WHY Steve is in such severe pulmonary distress. The hospital's own consent form said, no definitive diagnosis of Mr. Seiberts lung problems can be made at this time by the patients physicians at Carilion.


That being the case, I don't see how -- simply as a matter of logic, much less medicine -- that they are in any position to pronounce Steve's case "hopeless," to suggest that he cannot and will not recover, and to opine that there is "nothing they can do."


It's much more the case, isn't it, that what the doctors are REALLY saying is "there's nothing WE know what to do to help your husband, so why don't you help us out of our predicament by agreeing that everyone should just give up on him?"


That seems pretty outrageous to me. Bea should not be bullied into make decisions that seem calculated to allow the doctors to escape the consequences of their own inability to get to the bottom of Steve's case.


A question to pose to the doctors could be, "If you don't know why Steve is in this condition, what is your basis for concluding that he won't get better and that his case is entirely hopeless?"


Fuzzy


(Note: This is really a very important concept for Bea to address with the doctors who are placing pressure on her. Could someone be sure that she sees this post? It's a logical/legal concept)

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a mom
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Poppy: Bea has seen the paper. But the doctors do not think Steve has Babesis. The tests come back negative, but problem is they do not test for different species or strains. Bea is still waiting for results from Clongen.

Everybody: Does anyone think Steve could have Babesia gibsonii instead of duncanii?

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Pocono Lyme
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Praying hard through the tears.

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2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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a mom
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You Guys, Bea wants to know if anyone thinks Steve could have Babesia gibsonii instead of duncani...?
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FuzzySlippers
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amom, since Bea is being placed under so much pressure from the hospital at the moment, could you please be sure that she sees what I posted above? Maybe relay the message to her somehow?


Sorry to seem pushy here, but it is really a crucial legal/logic point for her to keep in mind as she fights for Steve's life.


I"m furious that she's being pressured to give up on Steve merely because they can't figure out what's going on.


Bea doesn't need that kind of unethical and unnecessary stress on top of everything else she's trying to get accomplished.

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poppy
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I looked thru all her previous posts and am not seeing any measurement of red blood cells. Her posts only mention WBC count. Surely they are testing for RBCs too. Wouldn't that be a clue of a parasite infection if the counts are off?

Regardless of which babesia he might have, the RBC issues would be similar.

Why is B. gibsoni being considered? It is a veterinary treated disease. There are other babesias in humans, such as MO-1 and divergens. What is really needed in a situation like this is someone like the old FL lab used to do with blood slides. That technique did not require knowing what species was involved like PCR does.

Copied below are the lab results for a dog with B. gibsoni. Seems like it might be similar to all babesias:

Laboratory Findings

PCV/TS (on presentation): 10%, 7.8 g/dL; PCV/TS (at discharge): 24%, 6.6 g/dL
Slide agglutination (macroscopic, microscopic): positive throughout hospitalization (after initial blood transfusion)
Chemistry profile (4 days into hospitalization): total bilirubin 0.6 mg/dL, increased ALP 457 U/L, hypercholesterolemia 420 mg/dL
CBC (4 days into hospitalization): neutrophilia with left shift (seg 20,999/uL, bands 1012/uL), monocytosis (512/uL), thrombocytosis (512,000/uL), regenerative anemia (Hct 24%, reticulocytes 585,900/mm3)
Babesia canis, Babesia gibsoni, Ehrlichia PCR (peripheral blood): negative
Blood smear cytology (ear prick): positive for Babesia gibsoni
Babesia gibsoni PCR (ear prick blood smear): positive

from:

http://www.vmsg.com/babesia-gibsoni

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lyme in Putnam
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Prayers being sent. [Frown]

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He took u to it, He'll you through

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poppy
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This is from Harrisons, a medical diagnostic textbook:

Diagnostic Approach (on babesiosis)

Regardless of history of exposure to ticks or tick bites, febrile patients living in endemic areas should have Giemsa-stained thick and thin blood films examined for small intraerythrocytic parasites.

Laboratory Tests

Nonspecific laboratory studies

Hematologic
Anemia, thrombocytopenia, mild leukopenia, atypical lymphocytosis
Elevated erythrocyte sedimentation rate
Evidence of intravascular hemolysis
High reticulocyte count, low haptoglobin level, hyperbilirubinemia, high lactate dehydrogenase level, hemoglobinuria

Chemistries
High alkaline phosphatase and aminotransferase levels

Other
Low serum complement levels
Polyclonal gammopathy

Specific laboratory studies
Giemsa-stained thick and thin blood films (see Figure 1)
Small ring forms in red cells; may also have tetrad forms that are diagnostic.
Indirect immunofluorescence antibody tests
Titer rises over 24 weeks after the onset of illness, then wanes over 612 months.
These tests cannot definitively differentiate between active and past infection or establish recurrent versus recrudescent infection.
Species-specific polymerase chain reaction (PCR) test using the RNA gene
Shows parasitic persistence when blood smear is negative
May be useful for monitoring response to treatment

Imaging

Chest x-ray
May show diffuse alveolar infiltrates in cases complicated by acute respiratory distress syndrome (ARDS)

Diagnostic Procedures

Not indicated

Treatment Approach

Treatment is advised for all patients infected with Babesia.
Treatment for B. divergens infection must be initiated as soon as possible as it tends to be more severe than B. microti infection.
Exchange transfusion in addition to medical therapy may be indicated in patients with severe disease.
Empirical treatment for concurrent Lyme disease and ehrlichiosis may be appropriate.

from:
http://www.harrisonspractice.com/practice/ub/view/Harrisons%20Practice/141106/all/Babesiosis

Have they done all these tests?

[ 10-06-2012, 02:32 PM: Message edited by: poppy ]

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a mom
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Fuzzy, Poppy: just told Bea about your posts.

Steve hasn't changed for awhile. She's going to go upstairs and look on cmputer.

HCT: 25.5
Hemoglobin: 8
RCB 2.5

(didn't knw what the lab's normal val range is.

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a mom
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Do you guys know if it's possible to post video clps here? Maybe someone can tell what the bugs are in teh blood...?
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Rumigirl
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Is there an emergency # to call the Columbia Presbyterian dr?? I'm sure that that's been investigated, but usually there is an

emergency # for drs. Of course, Steve is not a current patient, but still . . . Could someone call the dr's # or the main # for Columbia Presbyterian and see if he can be paged?

In terms of Babesia herxes, one of the best things to help, which could be done in this situation, but they probably wouldn't

consider it, is to do glutathione IV pushes. That helps to clear all herxes. But good luck with a hospital, esp this one on this!! Sad state of affairs!!

Is Bea talking with the hospital administrators? Can she get a lawyer to talk with them ASAP?? They have to know that if they don't do everything necessary to save his life, they will have a lawyer with a wrongful death suit on their hands.

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lax mom
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I think I heard that someone was on his deathbed and the Dr's gave them dialysis...bought him some time???

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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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sixgoofykids
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moving to general support

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sixgoofykids.blogspot.com

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