A little more about me

[Guest guest]

Hi ,

Welcome. If you are unhappy with Einstein's doctors, maybe you should try

Univ. of PA hospital. One of the member's son (Ty) will be having his

transplant there. Luanne (his mother) seems very satisfied with his

treatment there and at Children's Hospital. I've heard Jefferson is also

very good. Don't let the doctors push you around. Insist upon knowing

everything. I've found that the more you know, the less afraid you are.

Take control of your health. This is your life. Sorry, didn't mean for it

to sound like a lecture. Maybe Luanne could give you some doctors' names

and you could get a second opinion on how best to handle your disease. If

you do need to get banding done, get it done soon. You deserve the best.

Just my 2 cents.

Debbie (Tommy's Mom)

> [Original Message]

> From: <Moonrosefury@...>

> < >

> Date: 6/22/01 6:48:39 AM

> Subject: [ ] A Little More About Me

>

> Hi there

> Thankyou for your responce Debbie, I am not sure why but when I came

>

> her I was so nervous. My mental state has not been terrific this

> week..you see like so many others I am sure, I have had alot smacked

>

> on me all at once, and it seems every time I get back from Einstein

> in

> Philadelphia, I am horribly shook up. I got a phone call yesterday

> too

> from one of the nurses there for schedualing procedures and got

> highly

> upset because she mentioned a *banding* procedure to me, that the

> doctor never even discused. I went on line looking for the info and

> nothing could be found. I dont like being left in the dark by any

> doctors etc and I am horribly scared about all of this. I only found

>

> out about my hepC3a Virus in March. They tell me my liver is very

> sick

> and I only have a year or two what ever that means...but need

> transplant. I am trying to get on list but that is a whole nother

> post

> and subject. Seems I have contracted virus from tatoo's that I have

> and I have been living with it for about 20 years possibly.

>

> Tis funny..how life works. Last year I lost my mom. I was in total

> depression. Then I loose my mother in law. So come this Jan I said

> to

> myself " I must snap out of this " ...and went and started a health

> regimin of good eating and excercise, and actually started to be

> able

> to talk with people again and Come around so to speak. I went to the

>

> doctor Cause I had a rash that was driving me nuts on my legs. This

> is

> how it all began. I also had a couple bleeds...but since they

> changed

> my bp medicine they stopped thank god. I am just at my wits end

> trying

> to cope with this alone. I cannot as of yet find support groups in

> my

> area and I know for a fact I am not alone.

>

> I need to know what is happening to me and my body, I am aware of

> alot

> of it now but there is so much I dont know. I am told that the

> interferon, can kill my type of virus but they are sure taking a

> very

> long time to get me on it. Seems every time I turn around its 6 week

>

> wait for this and that. ITs precious time I *feel* I can save what

> tiny part of my liver I have left...I dunno maybe I am looking at

> this

> wrong....*sigh*

> Sheesh...Look a book...I have so much inside I am going to burst so

> I

> will save more for next time.

> Thankyou For Listening

> S.

>

>

>

[Guest guest]

> Hi ,

>

> Welcome. If you are unhappy with Einstein's doctors, maybe you

should try

> Univ. of PA hospital. One of the member's son (Ty) will be having

his

> transplant there. Luanne (his mother) seems very satisfied with his

> treatment there and at Children's Hospital. I've heard Jefferson is

also

> very good. Don't let the doctors push you around. Insist upon

knowing

> everything. I've found that the more you know, the less afraid you

are.

> Take control of your health. This is your life. Sorry, didn't mean

for it

> to sound like a lecture. Maybe Luanne could give you some doctors'

names

> and you could get a second opinion on how best to handle your

disease. If

> you do need to get banding done, get it done soon. You deserve the

best.

> Just my 2 cents.

>

> Debbie (Tommy's Mom)

>

> > [Original Message]

> > From: <Moonrosefury@n...>

> > < @y...>

> > Date: 6/22/01 6:48:39 AM

> > Subject: [ ] A Little More About Me

> >

> > Hi there

> > Thankyou for your responce Debbie, I am not sure why but when I

came

> >

> > her I was so nervous. My mental state has not been terrific this

> > week..you see like so many others I am sure, I have had alot

smacked

> >

> > on me all at once, and it seems every time I get back from

Einstein

> > in

> > Philadelphia, I am horribly shook up. I got a phone call

yesterday

> > too

> > from one of the nurses there for schedualing procedures and got

> > highly

> > upset because she mentioned a *banding* procedure to me, that the

> > doctor never even discused. I went on line looking for the info

and

> > nothing could be found. I dont like being left in the dark by any

> > doctors etc and I am horribly scared about all of this. I only

found

> >

> > out about my hepC3a Virus in March. They tell me my liver is very

> > sick

> > and I only have a year or two what ever that means...but need

> > transplant. I am trying to get on list but that is a whole nother

> > post

> > and subject. Seems I have contracted virus from tatoo's that I

have

> > and I have been living with it for about 20 years possibly.

> >

> > Tis funny..how life works. Last year I lost my mom. I was in

total

> > depression. Then I loose my mother in law. So come this Jan I

said

> > to

> > myself " I must snap out of this " ...and went and started a health

> > regimin of good eating and excercise, and actually started to be

> > able

> > to talk with people again and Come around so to speak. I went to

the

> >

> > doctor Cause I had a rash that was driving me nuts on my legs.

This

> > is

> > how it all began. I also had a couple bleeds...but since they

> > changed

> > my bp medicine they stopped thank god. I am just at my wits end

> > trying

> > to cope with this alone. I cannot as of yet find support groups

in

> > my

> > area and I know for a fact I am not alone.

> >

> > I need to know what is happening to me and my body, I am aware of

> > alot

> > of it now but there is so much I dont know. I am told that the

> > interferon, can kill my type of virus but they are sure taking a

> > very

> > long time to get me on it. Seems every time I turn around its 6

week

> >

> > wait for this and that. ITs precious time I *feel* I can save

what

> > tiny part of my liver I have left...I dunno maybe I am looking at

> > this

> > wrong....*sigh*

> > Sheesh...Look a book...I have so much inside I am going to burst

so

> > I

> > will save more for next time.

> > Thankyou For Listening

> > S.

> >

> >

> >

[Guest guest]

Do you prefer Cas or ? Where in Bucks County are you? My husband and I

lived in Newtown right after we were married. Regarding waiting...

sometimes the " pain in the butts " are first served, not necessarily the

sickest. Try being a " pain in the butt " . What do you have to lose?!

Have a pain free day!

Debbie (Tommy's Mom)

>

> Hi Again

> Well from what I understand from my insurance company without going

> into technicalities, the Einstean Docs ARE my second opinion. I was

> originally diagnosed down here in my area in L.Bucks County, and

> have

> a primary here, an a blood doc and main Gastrologist. Once I took

> myself to einsteain specialist they say that is my second opinion.

>

> Dont get me wrong the doctores here come highly praised in the

> country.ITs not that, just the time they take in doing things, and

> the

> banding incedent. My doctor never mentioned it.

> I was told my hepc 3a virus could be possibly cured totally the

> interferon kills the virus. So since that exciting news which was 5

> weeks ago, I had a test done, went back monday..half expecting to be

>

> started on the medicine. But no. He orders another test which is all

>

> well and good BUT why do I have to wait till the second week in

> August?? And in the meantime..it wastes precious time for maybe the

> medicine helping what liver I have left.

> Like the Banding...finding out something from a nurse, that doc did

> not mention, disturbing.

> I know these doctors are busy busy busy with many alot worse then I

> but it is also not their liver going down the tubes while they wait

> hoping for an appointent for a test.

> I figure I wait till august, then he wants a jugular biopsy, another

>

> wait god knows may be another 2-3 months for Interferon.

> If I give up the doctors here, I forfeit any chance of seeing anyone

>

> in this particular Hospital for this problem again according to

> insurance.

> I want to remain positive bout all this. I am scared bout the drug

> therapy maybe not working and being too late by the time they get

> around to it.

> I am scared also for the possibility of even getting on list but

> that

> is another story. Mainly cuz of my size I am a lil larger woman and

> they seem to think I am rite at border line for list. That is

> another

> worry another time..

> See why I need ppl to share and talk to?

> Whew

> Thankyou for listening

> Hugs

> Cas

>

>

>

>

[Guest guest]

,

Did you ask the doctor why he's waiting to put you on the

interfuron? I know I was put on prednisone before all the tests were

completed. Make sure you write down questions that you want answered

before you see the doctor. If you're anything like me, once I get in

there I forget everything. Make the doctor answer you to your

satifaction. You pay them. They are YOUR employee. That's one

thing I have learned very quickly since I was dx. I have to stand

up for myself because no one else will. Please take care.

Debbie/FL

[Guest guest]

Thank you all for your kind words & concern. With all you've been

through, I can understand the pause for concern. I had to follow my

gut. My implants had gotten infected and/or contaminated when I tried

to breastfeed my twins 5 yrs ago & they were just plain old (11 yrs).

When Dr. Kolb thought I was too ill to reimplant & said that I would be

completely flat; I became terribly depressed. I was very ill & the

last thing I wanted to deal with was my mental health, too! I felt in

my heart, that if I could just get the old implants & capsules out,

that I would be ok. I was dealing with ongoing systemic fungal/yeast

infections along with almost all of the other symptoms listed. I was

following Dr. Kolb's protocol and am still taking detox supps. and

primal defense. I'm doing a systemic cleanse this week, thanks to the

very good advice I have received from this site! Anyway, I just wanted

to give alittle more in depth info on my personal experience and still

hoping that my experience/knowledge can help someone else.

Thanks, again!

Cheryl