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» LymeNet Flash » Questions and Discussion » Medical Questions » UPDATE FROM BEA 10/6 with URGENT medical questions/concerns

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Author Topic: UPDATE FROM BEA 10/6 with URGENT medical questions/concerns
Rumigirl
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[At Six's suggestion, when I asked why this had been moved to Medical Questions, I am copying the first post back to Medical. Could someone else copy the other posts in the thread that are medical and not about prayers and add it in here? The rest of the thread is under General Support now. Thank you! Trying to move this forward quickly.

If a mod could move the whole thread back, that would be much easier. Then, I'd delete this one, or you could.]

Dekrator48
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posted October 06, 2012 11:49 AM
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
--------------------------------------------------------------------------------
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
--------------------------------------------------

--------------------
The fibromyalgia I've had for 25 years was an undiagnosed Lyme symptom.

I can do all things through Him who strengthens me -Philippians 4:13
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sixgoofykids
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This post is for answers to medical questions. If you would like to share your support and prayers for Bea and Steve, please go here - http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/31111?

--------------------
sixgoofykids.blogspot.com

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FuzzySlippers
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Here are the posts I contributed:


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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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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lax mom
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FuzzySlippers,

They are trying to CYA. They are terrified that the tests will come back and they will be forced to act.

If Steve is no longer with us, then they can say "we did all that we could...we just didn't know any better".

This is nearly criminal. Forget the "nearly"...it is criminal.

If I had $, I would wish the best lawyer right by Bea's side. They are putting her under duress, trying to cover their own tails.

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

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FuzzySlippers
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lax mom, I know what they are doing. The language I used was very specific in the hopes that it would help Bea. I meant what I said when I told her that it was a legal concept.

So, who has permission to move everyone else's medical information input/posts from the other thread to this thread -- anyone know?

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Rumigirl
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ANyone can copy and paste the previous posts (that's what I did for the first post); I just ran out of time to do the rest. Please do! Six said that this thread can be for the medical questions/issues.

The whole situation that the drs are putting Bea and Steve through is beyond belief. ANd, as Randi said, there but for the grace of God go all of us, if we were in such a situation. It's a disgrace, and, yes, criminal.

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hadlyme
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posted 10-06-2012 06:15 PM
--------------------------------------------------------------------------------
FOUND THIS:She should get to this site and print out the info for the dr's. This article is written by a dr. at Mass General

http://www.aafp.org/afp/2001/0515/p1969.html


Common Complications of Human Babesiosis
--------------------------------------------
Acute respiratory distress syndrome

Anemia requiring transfusion

Congestive heart failure

Disseminated intravascular coagulation

Hypotension/shock

Myocardial infarction

Renal failure

When to Suspect and How to Monitor Babesiosis

ELEFTHERIOS MYLONAKIS, M.D., Massachusetts General Hospital, Boston, Massachusetts

Am Fam Physician. 2001 May 15;63(10):1969-1975.

See patient information handout on babesiosis, written by the author of this article.


In the past decade, cases of babesiosis in humans have been reported with increasing frequency, especially in the northeastern United States. Babesia microti (in the United States) and bovine strains (in Europe) cause most infections in humans. Most cases are tick-borne, although cases of transfusion-associated and transplacental/perinatal transmission have also been reported. Factors associated with more severe disease include advanced age, previous splenectomy and immunodeficient states. Symptoms include high fever, chills, diaphoresis, weakness, anorexia and headache. Later in the course of the illness, the patient may develop jaundice. Congestive heart failure, renal failure and acute respiratory distress syndrome are the most common complications.

Therapy using the combination of quinine sulfate and clindamycin was the most commonly used treatment; however, atovaquone suspension plus azithromycin was recently reported an equally effective and less toxic therapy. Exchange transfusion, together with antibabesial chemotherapy, may be necessary in critically ill patients

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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BoxerMom
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Babesia runs a clinical course that is very similar to Malaria. They are both RBC piroplasms. If anything, Babesia is more virulent. There is an incredible amount of research on Malaria, vs. almost none on Babesia.

I've been meaning to post on cerebral malaria, as many people with Lyme and co-infections are confused about Babs vs. Bart symptoms. But first, some abstracts on Malaria and ARDS:

http://www.ncbi.nlm.nih.gov/pubmed/18807374

http://www.lungindia.com/article.asp?issn=0970-2113;year=2010;volume=27;issue=3;spage=154;epage=157;aulast=Sarkar

http://www.scielo.br/pdf/bjid/v9n5/a11v09n5.pdf

http://www.japi.org/january_2010/Article_11.pdf

http://www.tm.mahidol.ac.th/seameo/2009-40-6/04-4610.pdf

http://www.rcjournal.com/contents/03.04/03.04.0282.pdf

I found all of these with a simple Google search of Malaria ARDS. There are plenty more.

Many of these links include case studies detailing lab results, x-ray findings and treatment for both the ARDS and Malaria. All the patients recovered with appropriate care.

I emailed all of this to Bea, but I don't know if she is checking all of her email accounts.

I understand the enormous hurdle of convincing doctors that Steve has Babesia and that ARDS is a documented complication. Maybe if enough lab values and x-ray findings match up with Malaria, they will at least have more evidence to consider, along with treatment protocols.

Much love and keep fighting,
BoxerMom

--------------------
 - Must...find...BRAIN!!!

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nefferdun
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What about a full blood transfusion? I have read in cases like this, that is what you should do.

"In life-threatening cases, exchange transfusion is performed. In this procedure, the infected red blood cells are removed and replaced with uninfected ones."

Here is a government posted case.
http://www.ncbi.nlm.nih.gov/pubmed/9835673

She should push for this. Like someone suggested, get a lawyer to advocate for him. His load is too heavy and he is too sick for the medication to help. He needs to reduce the load with a transfusion.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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beaches
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I am wondering if Steve's haptoglobin level was checked? If it is low, that means hemolytic anemia, which can be caused by babesia.

I don't know how accurate this number is from hospital labs, Quest or Labcorp.

Our hematologist uses Shiel Lab. Website - www.shiel.com/

Does anyone know if Steve has had a consult with a hematologist?? If not, it's certainly in order and Bea has the right to request same.

Nefferdun, I think what you are referring to is plasmapheresis?

I agree, this would be an appropriate measure, considering the circumstances.

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Rumigirl
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Good going, guys! Yes, she should definitely push for a blood transfusion. And get the help of a top-notch lawyer to enforce that they MUST do what is necessary to save his life, rather than try to have her "pull the plug," which is unconscionable.

Does anyone have a recommendation of a top lawyer in the area? Or a way to find one for her? She has so much else on her hands, but she really needs one pronto.

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beaches
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Rumigirl, thanks for continuing to emphasizing the need for Bea to retain counsel.

These doctors must absolutely to what is necessary to save his life instead of even remotely suggesting that she "pull the plug." I was sickened and disgusted when I read that.

I don't have a recommendation, but I came across this site when I googled. It would be worth a phone call to see if they could help:

http://www.ggbslawfirm.com/aop/

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WPinVA
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Bea - what about asking for a blood transfusion based on Steve's bloodwork (low hematacrit/hemoglobin or whatever it is), LEAVING ANY MENTION OF BABESIA OUT ALTOGETHER for now, since they seem so hostile to that.

If a transfusion is an accepted treatment for his numbers then they would be hard pressed to say no.

Is he on Medicare? There is a complaint process for improper care or for not getting treatment after condition changed, etc.

Obviously you don't have time to wait for the complaint process to run its course but you could write a letter and threaten to file it unless they change course and provide the requested treatment, etc.

The risk is that this might make the situation deteriorate further but OTOH it might also get the attention of people (hospital administrators, general counsel, etc), who would worry about the risks of not acting.

Have you elevated your complaints to that level of the hospital yet? The doctors sound stubborn and entrenched so hopefully someone in the admin/general counsel's office would take note of this situation with a less-biased viewpoint.

here is the link:
http://www.medicare.gov/claims-and-appeals/file-a-complaint/doctor-hospital-or-provider/complaints-about-providers.html

If you want to move forward with another letter, I'd be happy to review a draft, offer comments, etc. If that would be helpful, send me a PM.

Several people have suggested an attorney and that's probably a good idea at this point. The Virginia State Bar has an attorney referral service. Here is the link:
http://www.vsb.org/vlrs/index.php/public/vlrs/
It looks like you can consult with an attorney under this program for the first half hour for only $35.

If you don't have the funds to retain an attorney, there are very likely some legal aid clinics in your area. Google "legal aid" and Roanoke.

For example, here is one possibility and even if it's not the right fit, perhaps they can suggest another organization that is:
http://law.wlu.edu/news/storydetail.asp?id=445

I hope this helps. You are such a strong woman and wonderful advocate, and I think you're amazing!

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Dogsandcats
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See "general" posts for prayer requests, etc.

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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WPinVA
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And the general post has people's suggestions as well so please read both!
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Rumigirl
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Yes, since most posts on medical were going to the thread under General, I gave up and have been posting there. It's rather difficult having the post with medical issues going in both forums! I wish they were all "under the same roof." It's asking a lot of Bea and everyone to check in both places.
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beaches
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I am reporting your post so that the mods can hopefully act on this.

No doubt, it's difficult for all of us to follow everything that Bea is going through, especially now that there are multiple posts in Medical and GeneraL.

For Bea's sake, is there a way for all posts to be "under one roof??"

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