map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Bea, go get them lady. In fact forget the lady like....go in fighting & screaming.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Bea-
So many years of on and on reading and posting here, but YOU are equally a constant--always such an inspirational care-giver and beautiful soul.
Pryaers to you and to Steve, and a very heartfelt thank you for the loving soul you are.
Hugs, Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Bea just called! They finally have her the informed cosent, she signed. She said she'll try to log in for update after a bit of well deserved dinner.
Bea said the first dose of Mepron is supposed to be tonight.
She did not know if the hosptial sent the blood to Dr. Kilani. He had not received it when she last checked. I hope the hosptial did what they said and sent it out.
Bea, you and Steve are both are amzaing!!
Hugs and Prayers!!
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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Stay strong. It's like you are fighting the battle for all of us We may mot be there physically but we ARE right there with you!
Get as much sleep as you can so you can stay vigilant!
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, a mom, for updating us. What a saga. I hope that they did send the blood to Kilani at Clongen. It's truly sobering how hard it is to get the drs in a hospital to do the most basic of things
that can mean the difference between life and death. Not that it is news that there is so much ignorance and antipathy to all things Lyme.
We are all continuing to pray for you both.
Posts: 3792 | From around | Registered: Mar 2008
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Finally signed the informed consent form at 6:15 p.m. today.
I am still in shock - the I.D. doc actually is listed on the form. I think they wanted to be listed as ``suggesting'' the treatment for babesia in case it actually works.
Some of the phrases on the form -
``... no definitive diagnosis of Mr. Seibert's lung problems can be made at this time by the patient's physicians at Carilion.''
``I am fully aware that the patient's condition is life-threatening and he is in serious and critical condition.''
``I have been advised that a possible diagnosis for the patient is Babesiosis...''
``I have further been advised that given the grave condition of the patient, such treatment would likely be futile, but would not result in harm or enhanced suffering.''
``I am aware that the practice of medicine is not an exact science.''
And now for the kicker - ``I herby assume all risks, hazards, costs, complications, and consequences of the above mentioned treatment.''
Yes, not only did I have to fight for Steve to get the mepron and zithromax for 7 days - but we get to pay for it as well.
One battle down and probably many more yet to come.
Hubby's LLMD said he would be really mad if he knew what was happening - I am sure of it. We did have the 6 days to discuss what he wanted done while he was on the steroids before he had the bronchoscopy and ended up on the ventilator.
I will just keep praying that it is not too little too late.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
WOW, CYA much??
They're in CYA mode but "just in case" this plan of action works for Steve, they'll look to get credit.
You did the right thing signing the form. But my God, could they have made it anymore difficult for you? I am not surprised. No doubt they had their legal and ethics depts on this like white on rice.
Bea, you shook them to their core. No doubt they've never encountered someone like you. Keep doing what you're doing.
But also please try to get sleep and rest for yourself. When you lay your head down at night, rest assured that so many here are with you and Steve in spirit and in prayer.
I continue to keep you both in my prayers.
Posts: 1885 | From here | Registered: Jul 2012
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Bea,
Praying that the mepron and zithromax causes dramatic improvement in Steve's condition.
If I had an "Advocate of the Century" award, it would go to you!
I'm not at all surprised at the wording on the consent form.
Covering their own behind is their main, or should I say only, concern.
It is so laughable for them to say that YOU have been informed that a possible diagnosis is Babesiosis, when you informed them, and they obviously don't know much about babesiosis.
That can be a whole chapter in the book I hope you write someday when Steve recovers.
Will keep praying and praying!!!
-------------------- 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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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Wow Bea, what a saga!
I pray that Steve will repond to the Babs meds most importantly so he will improve, and secondly so these doctors will learn something.
quote:Originally posted by seibertneurolyme: Hubby's LLMD said he would be really mad if he knew what was happening - I am sure of it.
So Steve's LLMD does not know what is going on? And his Lyme doctor has no say whatsoever regarding Steve's treament?
Has Steve recently had his immunoglobulin levels tested?
Prayers continue for you both.
Posts: 4682 | Registered: Oct 2000
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Wow, YOU have been advised that Babesia is a possible diagnosis? Unbelievable!
Lets hope that this turns Steve around and provides all those doctors with the learning experience of a lifetime!
You have both been through so much. You are both fighters and truly amazing people.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Bea, I have been following this post faithfully..and prayerfully. I say WOW. You are one amazing person!! It wears me out just reading it. I can't imagine having to juggle all the intense emotions involved on the scene there. And, how you manage to keep us all informed so well is also amazing. I thank you for the strength and encouragement you show us all. I need that personally right now. You are an inspiration. Hugs and prayers to you and your honey and I too pray that the meds will vindicate you both.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I so wish that some of our lyme folks that live close by could gather and......would come up to the hospital and visit you Bea.
Take you to lunch nearby and just be there for you to talk real lyme & co chat.
This is my prayer.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
This is not unusual when people with tickborne diseases get into a hospital. They go there looking for help and get the opposite. I hope this turns out better than some I have heard about. There is a child currently in a Boston children's hospital that the hospital will not release and are trying to take away custody from the parents.
What a nightmare, that the people we go to when most desperate turn out to be the least helpful, and in many cases do absolutely the wrong things.
Posts: 2888 | From USA | Registered: Mar 2004
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Ha ha Kentuckywoman... I know.... just reading Bea's posts makes me exhausted.
You are a fabulous woman Bea ... you have God on your side and all of us.
The last time I was in the ER, I told them I was on Mepron and the doc said "what's that?"
Posts: 2232 | From USA | Registered: Aug 2009
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Yay!!
Good luck and still praying.
Thanks a mom and Bea for the updates.
Bea you are one superwoman!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Maybe we should picket outside the hospital!
Posts: 2541 | From Northeast | Registered: Jan 2008
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Bea, it's atrocious that they are making you pay for the treatment, but you're still doing the right thing. I'll keep praying too.
I don't know the hospital's policy, esp. after signing an informed consent form -- but there may still be a way for you to get the hospital costs written off after the fact, as most hospitals do have an appeals process regarding financial need.
You might want to see if there is a patient advocate in this hospital -- they could help connect you with the right resources to get the paperwork for this type of thing, and just be helpful in general in a go-between capacity.
They are often retired volunteers, sometimes people with really good knowledge who just want to continue contributing.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Sammi -- Think I worded it wrong -- Hubby's LLMD meant that they thought Steve would be really mad about everything that has gone on. His LLMD has been very supportive -- we have talked by phone several times. But no the hospital docs do not want to talk to his outside doc.
His LLMD did have one conversation with one of the I.D. people -- the hospital doc had said they would not be able to get hold of his LLMD after 4:00 on a Friday and I said I was waiting for a call back from his doc and they called about then so the doc had to take the call. The hospital doc was angry and did not want to listen to much of anything hubby's outside doc had to say.
That was I.D. doc #2 -- I.D. doc #3 is on the case now. There are only 5 I.D. docs at this hospital and the other 2 are much younger I think.
Will post a more detailed update this evening.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, Bea, the wording on that blasted form??!! They have no shame whatsoever!! Lord have mercy!
So are you in close touch with his LLMD? I know that he has no power in the situation, which is scary. I don't think there is an LLMD anywhere that has any say, due to not having any hospital privileges.
The fact that he's still hanging in there is encouraging. Continued love and prayers for you both.
Posts: 3792 | From around | Registered: Mar 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
So thankful he is doing a little better! I've been praying. You are one amazing Superwoman!!! xo
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Still praying...
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
They better not hold you financially responsible for everything from here on. They could list just about "anything" as a "complication."
I think we'll ALL be down there picketing if they try that on you two!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
quote:Originally posted by Lymetoo: They better not hold you financially responsible for everything from here on. They could list just about "anything" as a "complication."
I think we'll ALL be down there picketing if they try that on you two!!
I agree with Lymetoo. It's not like he was choosing to have cosmetic surgery.
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
What a saga!
When Steve pulls through this, you two should write a book - sell for movie royalties - and pay for every dime these dingbat doctors ran up by ignoring your initial pleas, and a lifetime of treatment to boot! Maybe you can buy a small tropical island where you Both can recover!
May God Bless Steve, with a miraculous response to the meds these docs refused to give to him. May he Strengthen you both - and keep you in his protection, and bring down a glorious healing for Steve. As above, so below, Father. This we ask, in the name of Jesus, our eternal Savior. Amen.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praying and praying!!
Wow, great article that Bea sent!!
Thanks, a mom for posting it.
-------------------- 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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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
You go, Bea! That's really good news.
Continued prayers with the two of you!
Posts: 2549 | From never never land | Registered: May 2005
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praying that Steve is improving on the meds, and Bea and Steve are filled with renewed strength.
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Bea,
I'm sure you've considered this but, in the whirl there, things can get lost.
Acetaminophen blocks the liver's ability to make and manage GLUTATHIONE. Some kinds of liver support may help offset that.
I know that hospitals are known for passing out acetaminophen like candy rather than actually address the full range of other pain relief measures
[and IV Glutathione is one method to help in so many ways - as long as it's not at the same time as medicines].
Just good to keep in mind.
Hope Steve continues to improve. Hope you are feeling as well as can be expected.
Hugs. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Before I close my eyes tonight I will lift you both up in prayer. Asking for the Lord's blessings for the two of you.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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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?
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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posted
Prayers needed please. When I called Bea, the Pastor was in the room with them.
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Oh no! I am very sorry to hear this. I am praying for a miracle for Steve.
Does Dr. Nash have an emergency number? There must be a way to reach him.
a mom, I tried to copy this into a new post, but it does not look right. Hopefully a moderator can start a new thread.
Praying for a miracle.
Posts: 4682 | Registered: Oct 2000
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posted
I'll post a thread for Bea. I'll post it in the Medical Section in hopes that it will receive more views and, hopefully, some help.
Posts: 503 | From Maryland | Registered: Oct 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
a mom,
I copied your last 2 posts and started a new thread in Medical Questions, only so that more people will see this update for now.
I know it will probably be moved at some point to General Support.
Saying fervent prayers for Steve and Bea!!!!!
-------------------- 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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