Opinions Please

January 26, 2008

Kendra

I would take all postings of E-mails to the parents.

My feelings are what has posted. If the baby cannot or

will not make it, it will take the course on its own and pass on.

I would surround the baby with joy, singing - prayers how much he is

loved. Amazing things have happened before - and miracles can happen.

I also suspect the chemo drugs have had some effect on her with this

child and it maybe the last time she can have a child, knowing that

she has already had to be stitched up to carry the baby this long as

well.

I do know a DR in West Palm Beach,FL he does have a gift -- I would

call him in a heartbeat - for the parents to talk to him - fly there

or have him fly to them. DR Stager is his name, and should

be listed in the phone book. He is not your ordinary DR - he is also

a spiritual healer working on many different levels.

In EOHarm , " Palmer " <marielenasmama@...>

wrote:

>

> I remember a long time ago, I met someone who had the same

diagnosis with

> her baby. I don't know how religious this couple is that you know,

but this

> friend of mine had someone give her a blessing. 'Whatever would be

would

> be', she decided, but couldn't end the baby's life herself. She

decided to

> enjoy all that pregnancy has to offer, feeling the movement,

singing to,

> rocking the baby inside, and then to enjoy the sweet little look on

her

> face, if even for just a few minutes, so that their baby could see

her mom

> and dad just once before she passed. Well, wouldn't you know, the

baby was

> born just perfect. Doctors didn't understand how the physical

defect would

> have changed so dramatically. All we know is that there were lots

of

> prayers and a willing-hearted family to accept whatever

circumstance was

> sent to them.

>

> Speaking towards the medical procedure, a mother's body does not

experience

> pleasant effects when a part of it is surgically removed before it

is time.

> A woman's body knows what is going on inside and what is best for

it. When

> her body decides that the baby is not fit for life outside or

inside, it

> will begin it's own process and naturally take care of things. If

it is

> induced, you can be certain that your poor friend will feel the

> repurcussions of that for years and years to come. There are

thousands of

> women out there who can attest to this. Tell her to pray about it

and

> follow her heart and her gut. Remember that miracles happen every

day.

> Hope this helps.

>

> Hugs,

>

> Palmer

>

January 26, 2008

God, my heart is in my stomach reading this story. All that planning

and anticipation. We can all relate in a tiny way, but their loss is

irreparable. It's very sad.

I don't know what people do to get through these things. Dr.

Stoller's recommendations seem excellent. All I can think of is that,

if her eggs aren't damaged from prior cancer treatment, maybe someone

she knows can act as a surrogate? It might (or might not-- everyone

is different) help them if they get back on the horse soon in terms

of just thinking about and planning their family.

Similar (but not as terrible) things have happened to people we know

and it really does make you think about the role of toxins in all

this.

I think a lot of us get kind of cold-blooded about looking up

teratogenic substances and toxins and their effects because we've

already had to face that something we'd either overlooked in our

environment or which we'd willingly allowed to be done to our kids

had such a terrible impact. We probably are more willing to look at

this stuff than most, so a lot of information would need to be

sensitively filtered for what is relevant or irrelevant so it doesn't

increase the trauma for these poor people. In that sense, it's very

kind of you to take on this morbid task of looking past mainstream

medicine's usual " toxic whitewashing " to try to find what possible

preventable causes exist for certain birth defects so that your boss

and his wife can be spared the filtering process. But that's only in

the case they're interested in investigating.

So, here's what I found in my utterly un-expert, morbid search: A

search for omphalocele (organs developing outside the body) and

neural tube defects related to spina bifida, including anencephaly

(absence of forebrain with potential for remaining portion of the

brain to be exposed) using the term " teratogenic " brought up tons of

abstracts. Any chemical which blocks the absorbtion of folic acid can

be a culprit in neural tube defects. Valproic acid (depakote) is

mentioned many times in relation to spina bifida, though it seems

that if she'd been taking this for seizures that you would have been

aware of it.

Omphalocele usually means abdominal organs developing outside the

body and may not be relavant at all, though there are many studies on

this, including one for the new platinum-based chemotherapy agents:

http://tinyurl.com/26xn2z

Also, this may have no bearing at all, but because of my usual focus

in looking at the effects of certain meds, I'd already read about

anencephaly occurring from SSRI exposure to expecting women.

Apparently the drug companies completely buried the data that this

effect is over two and a half times as likely to happen to the

offspring of women on certain antidepressants commonly prescribed in

pregnancy:

http://tinyurl.com/2497v5

Here's an abstract regarding methionine deficiency as a possible side

effect of drugs (valproic acid in this case) which can contribute to

neural tube defect. I include this only because it seems logical that

any substance (including metals, which can set off another search)

which are known to effect methionine could be of interest:

http://sciencelinks.jp/j-east/article/200010/000020001000A0412208.php

>

> My boss is quite a few years my junior but delightful eye candy.

> Lenny met him when we went to Sacramento a year ago, my boss shared

> his shrimp with Lenny's son after he discovered he loved them.

> Anyway, he and his wife are expecting their first child. Despite

> being in her 20's, she had cervical cancer years ago and so was

> labeled a high risk pregnancy. In fact they had to " sew her up " so

> that she could carry the baby. There has been a risk of

miscarriage

> the entire way. But they made it to five months, things going very

> well. They have been very open to all the vaccine info, they know

> our story well. And were even open to my mistrust of ultra-sound

> but broke down this week and had an ultra-sound scheduled, she is

> far enough along to find out the sex. So they did the ultra-sound

> on Thursday and they were given devastating news. Apparently the

> brain is developing outside of the body, outside of the skull.

They

> are being told there is no chance of survival, no fix for this,

> nothing to do but take the baby now. The baby is of course still

> growing, strong heartbeat, kicking. Perhaps in the amniotic fluid

> the brain is very happy. They tell them the baby even if it

> survived to full term would die within minutes after the birth.

> I know what it feels like to lose a pregnancy, but never in such a

> bizarre and devastating fashion as this. Of course we all know

> cases where horrible outcomes were foreseen and when the baby is

> born,they are fine, or far less affected than estimated. But is

> there also a line where it truly is hopeless.

> And even if it is hopeless, I think it is inhumane that they want

to

> schedule her for surgery " sometime next week " and sent them home to

> spend the weekend with their grief and a pregnancy with a strong

> beating heart and kicking baby. I don't even know what to say to

> them, this is totally beyond advice or council that I feel

qualified

> to give.

> Could this be doctors just trying to get rid of a less than perfect

> fetus, or is this condition one without answers or solutions.

> Has anyone ever seen this, they are being told that this is 100%

> certain, there is 0% chance they say the child will even live, let

> alone be O.K. I also wonder if this could be the result of chemo

> and radiation from just a few years ago. My God it just seems

there

> is no good ending here, how devastating for them. I'm heartbroken

> for them no matter what happens here.

> Kendra

>

January 26, 2008

Thank God I didn't have to make the decision, it was made for me (by

God I suppose). I can't imagine having to make a decision like that.

I am catholic and, well, you know we have a guilt trip about

everything to begin with let alone something like that....

-- In EOHarm , " Palmer " <marielenasmama@...>

wrote:

>

> I remember a long time ago, I met someone who had the same diagnosis

with

> her baby. I don't know how religious this couple is that you know,

but this

> friend of mine had someone give her a blessing. 'Whatever would be

would

> be', she decided, but couldn't end the baby's life herself. She

decided to

> enjoy all that pregnancy has to offer, feeling the movement, singing to,

> rocking the baby inside, and then to enjoy the sweet little look on her

> face, if even for just a few minutes, so that their baby could see

her mom

> and dad just once before she passed. Well, wouldn't you know, the

baby was

> born just perfect. Doctors didn't understand how the physical

defect would

> have changed so dramatically. All we know is that there were lots of

> prayers and a willing-hearted family to accept whatever circumstance was

> sent to them.

>

> Speaking towards the medical procedure, a mother's body does not

experience

> pleasant effects when a part of it is surgically removed before it

is time.

> A woman's body knows what is going on inside and what is best for

it. When

> her body decides that the baby is not fit for life outside or inside, it

> will begin it's own process and naturally take care of things. If it is

> induced, you can be certain that your poor friend will feel the

> repurcussions of that for years and years to come. There are

thousands of

> women out there who can attest to this. Tell her to pray about it and

> follow her heart and her gut. Remember that miracles happen every day.

> Hope this helps.

>

> Hugs,

>

> Palmer

>

January 26, 2008

Kendra - being a three-time miscarriage survivor, I think I feel that pain but not to this extent. My current child with an autism diagnosis has helped me learn that it is all of those almost unbearable times in life that made me strong enough for this and to be the fighter that I am (at school, government, doctors, vaccines, etc.). I have learned that if I never knew ANY emotional pain, I could be one of the helpless/hopeless who could have taken my own life. I want my kids to fall sometimes and be disappointed sometimes so that when things like this happen, life isn't over.One person whom I admire so much is my father. He was a real Depression Era survivor. He had thirteen

brothers and sisters and each of the six boys was out of school and working by the time they were 14. It forced my dad to be self-taught and he posseses the common sense and wisdom and academic smarts that one dreams of for their children. So, my grandparents did their kids no harm in having taken them out of school. Of course, I don't know of too many kids these days who would do well in this situation. Anyway, when I was 36 and became pregnant with my daughter, my OB convinced me to have the Amnio and I risked losing her because of that test. A year after she was born, I was born again in my faith and when I became pregnant at 40 with my son (spectrum) it was demanded that I have an Amnio. I replied to the OB: "Why? I would never abort this baby." My feeling was if something similar to your friend were to happen, I would deliver the baby, hold him in my arms, love him until the Lord

took him. That event, most likely preparing me for whatever worse thing that could possibly happen. Rox Opinions Please

My boss is quite a few years my junior but delightful eye candy.

Lenny met him when we went to Sacramento a year ago, my boss shared

his shrimp with Lenny's son after he discovered he loved them.

Anyway, he and his wife are expecting their first child. Despite

being in her 20's, she had cervical cancer years ago and so was

labeled a high risk pregnancy. In fact they had to "sew her up" so

that she could carry the baby. There has been a risk of miscarriage

the entire way. But they made it to five months, things going very

well. They have been very open to all the vaccine info, they know

our story well. And were even open to my mistrust of ultra-sound

but broke down this week and had an ultra-sound scheduled, she is

far enough along to find out the sex. So they did the ultra-sound

on Thursday and they were given devastating news. Apparently the

brain is developing outside of the body, outside of the skull. They

are being told there is no chance of survival, no fix for this,

nothing to do but take the baby now. The baby is of course still

growing, strong heartbeat, kicking. Perhaps in the amniotic fluid

the brain is very happy. They tell them the baby even if it

survived to full term would die within minutes after the birth.

I know what it feels like to lose a pregnancy, but never in such a

bizarre and devastating fashion as this. Of course we all know

cases where horrible outcomes were foreseen and when the baby is

born,they are fine, or far less affected than estimated. But is

there also a line where it truly is hopeless.

And even if it is hopeless, I think it is inhumane that they want to

schedule her for surgery "sometime next week" and sent them home to

spend the weekend with their grief and a pregnancy with a strong

beating heart and kicking baby. I don't even know what to say to

them, this is totally beyond advice or council that I feel qualified

to give.

Could this be doctors just trying to get rid of a less than perfect

fetus, or is this condition one without answers or solutions.

Has anyone ever seen this, they are being told that this is 100%

certain, there is 0% chance they say the child will even live, let

alone be O.K. I also wonder if this could be the result of chemo

and radiation from just a few years ago. My God it just seems there

is no good ending here, how devastating for them. I'm heartbroken

for them no matter what happens here.

Kendra

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January 26, 2008

Thank you Dr.Stoller and everyone else who replied. I too lost many

pregnancies, but this adds an excruciatingly painful element to the

loss. They are some of the greatest people in our lives, they adore

Keely love to have her around and have never treated her any

differently. Her parents have also fallen in love with Keely, we

have dinner parties and game nights. I was also amazed at how

awesome my boss was with Lenny's son. All of them show up now for

the " Pettengill Classic " which is a fundraising 101 innings of

softball that raises money for the local cancer community in my

brother's name. You should have seen Keely and my boss one day after

school, she rode the bus to work and the two of them were just

tormenting the heck out of each other. She pretended to be his

secretary and he was giving her real work. She finally told him " I

quit " to which he replied " too late you are fired " , she told him he

was a dork and it just went from there, they were hilarious. He will

be an awesome father.

Dr. Stoller, I will have them check out your website.

The pain for me never lessens when I see others experience the

reality that " it " doesn't just happen to other people. This just

sucks.

Kendra

>

> There will be grief in any event. :et them know about my webpage

(GriefSOS.com).

>

> Between the flower remedies and the oxytocin she and your boss

should be able to ride it out.

>

> Shew will have the extra hormonal challenge of being post partum -

all the more reason to have oxytocin on hand.

>

> KP Stoller, MD

> President, International Hyperbaric Medical Assoc

> Medical Director, Hyperbaric Medical Center of New Mexico

> www.hbotnm.com

>

> Please note: message attached

>

> _____________________________________________________________

> Furniture Repair Franchise - Your key to personal and financial

independence. Click Here!

>

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>

July 3, 2008

Please let me know what you think of the following results. My blood tests and they came back as follows:TSH 8 (0.3 to 5.0) T4 11 (9 to 24) Antibodies 436. I was givenlevothyroxine but my mother took that and her hair fell out and shewas depressed and went to hell and back so I got in touch with aDoctor who supplies me with Armour (as our local practice refuse) andI have gradually built up to 105mg and soon to be 120mg and my basaltemps are still averaging approx 36.1. My latest results (6 monthsago) where TSH = 0.425 - T4 = 10. Suzannecampaigner77 <sheilaturner@...> wrote: HI SuzanneApologies, I found that somehow, the order of messages being receivedhad become mixed up, and I have now sorted this my end. The group rightnow, is extremely quiet, it does go through phases, and when the suncomes out, people tend to go out and now sitting around their computers.We have had over 2,300 messages in one month alone, and it can beextrmeely busy. Some of us are away on holiday, or out and about, so ifyou do not get a response to any message you post, it is best to 'bump'your message again and somebody will come along with a response.Luv - Sheila>>> I am new to the group and I dont seem to get many replies but I am> still fetting used to how things work and wonder if you are all too> busy sometimes so I just post

again.>> Love Suzanne

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July 9, 2008

Hi Suzanne,

A T4 of 10 is still

very low as are your temps. Have you considered a dose increase?

Subject: Re:

Re: Opinions please

Please let me know what

you think of the following results.

My blood tests and they

came back as follows:

TSH 8 (0.3 to 5.0) T4 11 (9 to 24) Antibodies 436.

I have gradually built up to 105mg and soon to be 120mg and my basal

temps are still averaging approx 36.1. My latest results (6 months

ago) where TSH = 0.425 - T4 = 10.

Suzanne

campaigner77

<sheilaturner@...> wrote:

HI Suzanne

Apologies, I found that somehow, the order of messages being received

had become mixed up, and I have now sorted this my end. The group right

now, is extremely quiet, it does go through phases, and when the sun

comes out, people tend to go out and now sitting around their computers.

We have had over 2,300 messages in one month alone, and it can be

extrmeely busy. Some of us are away on holiday, or out and about, so if

you do not get a response to any message you post, it is best to 'bump'

your message again and somebody will come along with a response.

Luv - Sheila

>

> I am new to the group and I dont seem to get many replies but I am

> still fetting used to how things work and wonder if you are all too

> busy sometimes so I just post again.

>

> Love Suzanne

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address?

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- millions of new email addresses available now at

November 4, 2008

Thanks Gail..at least I like grapes !! in Nevada'Be kinder than necessary because everyone you meet is fighting some kind of battle. Subject: RE: opinions pleaseTo: HepatitisCSupportGroupForDummies Date: Tuesday, November 4, 2008, 9:45 PM

Girl buy grapes and wash them and put them in bags in the freezer to much on when you feel hungry or craving cigarettes.It is normal to gain after quitting smoking,but we have to drink liquids and fruit when we get cravings instead of the fatty stuff.If you get fatty liver it will reduce your chances of suceeding at clearing the virus while on treatment.Most doctors won't treat if you have fatty liver just for that reason.

Gail

[HepatitisCSupportG roupForDummies] opinions please

Hi Everyone,Well I saw my/a Hep Dr on the 24th. He says my blood work looks really good but he wants me to lose 35 pounds. I asked if he was going to treat the dragon and he said not until I lose weight. My normal before I found out i was sick weight is 145 and i am 5'6. I now weigh 176. He was glad that I have continued not to smoke but said that substituting ice cream for cigarettes could kill me too.(fatty liver disease) I told him I had contacted a foundation that helps with fundraising for transplants and that I needed a letter that said I was on the list. I told him that the transplant committee wanted me 1yr alcohol free , at least 3 months smoke free and to meet financial obligations that my insurance (medicaid) would not pay as well as the temporary housing relocation and food for thirty days plus anything else. He said for me to lose the 30 pounds and we would talk again.OK here is my situation. I am filling out the fundraising campaign paperwork. I don't know how many of you know about the paperwork but there are alot of obligations that need to be filled before sending in.(Campaign manager, co chair, publicity person, treasurer, and 20 volunteers in writing) . OK so I got everyone I need and that was really hard on me to ask people to do this, especially in my small town.You also need to send in the status of your transplant. OK lets say the committee says to wait another 6 months. Do I go ahead with the fundraising? Is it possible that I might not need a transplant if my bloodwork looks good??? My MELD is 11 and viral load is lower than its ever been,. Have light to moderate brain fog, major muscle aches, take lactulose 3 times a day but still only go 1 time, my spleen is very enlarged, liver still very enlarged, Dr lowered spirolacton down from 300mg to 200mg a day.Also lets say I started to get funds and don't need transplant for a long time, is this fair or right to the people that donated??? Can ESLD with HepC (told to get my affairs in order a year ago) actually get better. I take milk thistle but have taken that for yearsI am so confused now and I can honestly say its not brain fog right nowHELP....opinions please in Nevada

November 4, 2008

Girl buy grapes and wash them and put them in bags in the freezer to much on when you feel hungry or craving cigarettes.It is normal to gain after quitting smoking,but we have to drink liquids and fruit when we get cravings instead of the fatty stuff.If you get fatty liver it will reduce your chances of suceeding at clearing the virus while on treatment.Most doctors won't treat if you have fatty liver just for that reason.

Gail

opinions please

Hi Everyone,Well I saw my/a Hep Dr on the 24th. He says my blood work looks really good but he wants me to lose 35 pounds. I asked if he was going to treat the dragon and he said not until I lose weight. My normal before I found out i was sick weight is 145 and i am 5'6. I now weigh 176. He was glad that I have continued not to smoke but said that substituting ice cream for cigarettes could kill me too.(fatty liver disease) I told him I had contacted a foundation that helps with fundraising for transplants and that I needed a letter that said I was on the list. I told him that the transplant committee wanted me 1yr alcohol free , at least 3 months smoke free and to meet financial obligations that my insurance (medicaid) would not pay as well as the temporary housing relocation and food for thirty days plus anything else. He said for me to lose the 30 pounds and we would talk again.OK here is my situation. I am filling out the fundraising campaign paperwork. I don't know how many of you know about the paperwork but there are alot of obligations that need to be filled before sending in.(Campaign manager, co chair, publicity person, treasurer, and 20 volunteers in writing) . OK so I got everyone I need and that was really hard on me to ask people to do this, especially in my small town.You also need to send in the status of your transplant. OK lets say the committee says to wait another 6 months. Do I go ahead with the fundraising? Is it possible that I might not need a transplant if my bloodwork looks good??? My MELD is 11 and viral load is lower than its ever been,. Have light to moderate brain fog, major muscle aches, take lactulose 3 times a day but still only go 1 time, my spleen is very enlarged, liver still very enlarged, Dr lowered spirolacton down from 300mg to 200mg a day.Also lets say I started to get funds and don't need transplant for a long time, is this fair or right to the people that donated??? Can ESLD with HepC (told to get my affairs in order a year ago) actually get better. I take milk thistle but have taken that for yearsI am so confused now and I can honestly say its not brain fog right nowHELP....opinions please in Nevada

February 19, 2009

On the surface it does seem like a bad idea, But I cannot really say??

Tom

In a message dated 2/19/2009 7:39:19 A.M. Mountain Standard Time,

tereniabender@... writes:

Morning, I don't post very often, so a quick recap for me. I have ddd

and was told I was a perfect candidate for a fusion in my lower back.

I've been dealing with this for years. But the neurosurgeon said he

won't touch it because it will exacerbate my fibromyalgia. Long story.

However, I'm looking for opinions on another matter. I know a man who

is 85 years of age. Not in real good health. Diabetes, replaced knee

and quadruple heart bypass just in the last 2 years. An orthopede now

wants to do a lower back fusion on him stating its a " simple procedure. "

I don't know if it's just me, but I would think for one, he's not in

very good health to be going through that, and two, it's not a " simple

procedure " if you ask me and think this surgery is a bad idea.

Any opinions would be appreciated.

Thanks,

Teri

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February 19, 2009