Back home

[Guest guest]

Hi Lori,

You've had an exceptionally negative experience and from what it sounds

like, it shouldn't have happened. Everytime I read about someone who has

been through so much, I realize how fortunate I've been that my problem is

isolated to AIH and apparently nothing else.

My main experience with Virginia Mason was through my husband. They did

his lung surgery and also his first back surgery. They'd just changed to

" HMO " at the time and it was a new thing for them. Our " primary " doctor,

Dr. Hayashi, was terrific. The only times I saw him he referred me

immediately to specialists and both times the doctors he had me see were

department heads. Mason used to be the best place to go for rare and

difficult diseases and conditions. The medical community has changed

radically in recent years, I know. We were out of the US when the changes

started and I was shocked and disturbed at what I saw when we returned. I

vowed that we'd never have an HMO, though we did briefly haved Virginia

Mason.

Last night I was sorting through family medical records (tons of them) and

I was pleasantly surprised to see that as far back as 1996, Seattle doctors

were checking my ANA, though they didn't tell me that. I wouldn't have

known what they were talking about anyhow. Up until just 6 months before I

was diagnosed with AIH, my labs were basically normal. Incredible. The

only problem I had that showed up in labs was blood in urinalysis and they

did IVPs, ultrasounds and all sorts of tests to find the cause. They never

did.

But, even the best doctor for one person might be absolutely wrong for

another. Years ago I went to an OB doctor who'd delivered all of my aunt's

children. She thought he was running 2nd. to God. I thought he was a

total, rude jerk and disliked him intensely. Maybe it was chemistry.

Also, I used to joke with my husband about how Dr. Hayashi seemed to run

all kinds of diagnostic tests on him and he ordered none for me.

Chauvenist? Who knows. I liked him anyhow, but I didn't dream I might

have a serious illness at the time.

I don't know much about attornies but I do know from talking to others that

you should look for someone from the biggest, most respected law firm in

town. There are some highly esteemed malpractice attornies and there are

some real shysters. The way an attorney is perceived and respected by

judges and the court in general means everything. My son had to file suit

against Labor and Industries in Seattle to get back disability pay and he

made the mistake of hiring one of those attornies who disappeared in the

night. He's still in and out of court and still barely getting by after

two years of legal battles. His new attorney works hard for him but she's

just starting out and can't afford a paralegal to do research. Believe it

or not, half of the research that's been done on L & I laws in Washington

State, I've done, and mailed them on to Bill.

Be sure to get all of your medical records before they somehow get lost or

misplaced!haved a cru me

gAlso, How your 6th

>

>Geri, the surgery was at Virginia Mason (I know you like that place, but I'm

>not real happy with them at the moment!).

>

>Sorry if I'm rambling... just full of wierd thoughts!

>

>Thanks again all for all the well wishes. It means a lot!

>

>LoriRosenberg@...

>

>You don't stop laughing because you grow old; you grow old because you stop

>laughing

>

>

>

>

>

>

>

>

>

>---------------------------

[Guest guest]

Dear Lynne, Welcome back to the land of the living. You had said 2 days and

boy, did you know your own body! Way to go Lynne. I am in a flare right now

from the poor diet during my Seattle adventure. Can hardly tell it. Hands and

feet sort of ache but NOTHING like the pain before. Whether it is the diet or

herbal supplements or a combination - something is really Kicking B___! Fell

off again yesterday and gave myself one piece of pie while out dining with my

husband. That was absolutely the best pie in the entire world. LOL But today

- back to the rice milk and Ezekiel bread for breakfast and true diet.

I am so glad you are doing well. I am sure you had the air waves hopping

with well wishes. :>)

Lynne Locatell wrote:

> From: Lynne Locatell <pooch@...>

>

> Well, I got out in 24 hours and am sitting pain-free in front of my 'puter

> after open gall bladder surgery - yay! My surgeon was quite surprised but

> he let me go home. I owe it to a series of tapes for deep relaxation during

> surgery that I've used for years with great results. Plus all the kind

> thoughts sent my way. I guess I must be pretty healthy after all

>

> With 36 hours fasting my RA symptoms went way down and have come back up

> again eating regular food. I'm looking forward to hitting the low carb

> regimen soon! Thanks again for all the support.

>

> Love,

> Lynne

>

> ------------------------------------------------------------------------

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> 1/936/0/_/532797/_/953484829/

> ------------------------------------------------------------------------

[Guest guest]

-

Welcome back. I'm glad things are getting under control.

Diane

[Guest guest]

,

Welcome home! I'm glad to hear that you may finally be on the road to

finding proper help for Skyler.

As for your other post about appetite on prelone~~~~ When is on

prelone she also is constantly hungry. I tried to watch the food

choices, limiting salt and fat. But my ped said not to let her go

hungry, that it is true hunger on these meds. So I guess all I can offer

by way of advice is what I was told. Try to keep healthy snacks

available, and try to encourage smaller portions several times a day so

that the hunger doesn't get out of control.

Liz

> " V. " wrote:

>

>

>

> [eGroups] My Groups | Main Page | Start a new

> group!

>

> Hello all,

> and thank you.

>

> Your words of support helped at a time of need.

> Alot happened on this trip but I won't go into too much detail. They

> did hospitalize Skyler. Still trying to get the kinks out of my neck

> from sleping on one of those fold out chairs. Again we were the

> novelty - Dr's coming from everywhere to see his 'stills rash'.

> Though it was sort of theraputic talking to them and giving insight to

> them from a parents perspective. Many were students who had not yet

> selected a field. Needless to say I put in a word for certified

> specialists in Rheumatology.

>

> Skyler is very glad to be home. And is (thanks to doubled Prelone

> doses) up and around.

> The word is this:

> They put him on " an IV prednisone push " (high doses to get quick

> results) and added Cyclosporin. His prelone dosage is doubled, they

> added something for MTX side affects and decided to remove the Enbrel

> in about a month (when the Cyclosporin should be working). They

> detected an iregularity in his heartbeat and ran several ekg's &

> echograms to check on pericarditis but dismissed it and said there was

> no concern.

> They wanted him to be placed in a hospital for another month to rehab

> but after considering our situation, have prescribed 4 - 6 weeks of

> Physical therapy outpatient locally (yet to be worked out with

> insurance). We go to see an Eye Dr for opthamology next week and see

> the regular Rheumi this Thursday.

>

> What they said is their results with Enbrel in Systemic cases has not

> been very good. Some of what they said coincided with some of the

> articles Georgina posted for us to read. I actually understood some

> of what they were talking about!! Thanks Georgina.

> So, now his immune system is very vulnerable and we have to arrange

> special care for him for atleast 6 weeks and start rehab soon as

> possible. While the Prelone is on high dose I can relax at nights and

> sleep some more but we really need to get him on a reduction schedule

> soon.

>

> Anyone out there have experience with Cyclosporin?

>

> Thanks alot all and again, God bless.

>

> Frazzled but stable,

> [ & Skyler]

>

> PS special tanks to Jana - and

> please keep my mother in prayers too.

>

>

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

,

I'm glad Skyler is stable. I hope you can move forward from here. Jana

[Guest guest]

Hi ,

I'm so glad that your hospital visit worked out well. It seems that a

lot of times the only thing systemic JRA kids respond to well enough and

quick enough during flares is an increased dose of steroids. At least as

a temporary measure until the DMARDs start kicking in. Though my son

hasn't used cyclosporine, other children on the list do take it. Or have

in the past. Hopefully you will get responses from them soon. My son

takes the combination of MTX and Plaquinel. Plus the steroids and

indomethacin, etc.

Yes, appetite certainly can pick up once the steroids are raised! Liz

had some really good advice about diet. Couldn't have said it any

better, myself. Try to follow those guidelines if you can but don't be

surprised if Skylar has that bloated look, especially in his tummy and

cheeks. They can also get a hump of fatty deposits by the back of their

neck, in between their shoulders. The body mass proportions change

drastically sometimes, as a result of the higher dose steroids. Try not

to be alarmed/bothered too much by these changes in his appearance. It's

hard to see such changes taking place. Josh even starting growing hair

in places where it wasn't expected (at least not at his age). It will

revert back to normal, gradually, once the dose is tapered.

Take care,

Georgina

wrote:

> ,

> Welcome home! I'm glad to hear that you may finally be on the road to

> finding proper help for Skyler.

> As for your other post about appetite on prelone~~~~ When is on

> prelone she also is constantly hungry. I tried to watch the food

> choices, limiting salt and fat. But my ped said not to let her go

> hungry, that it is true hunger on these meds. So I guess all I can offer

> by way of advice is what I was told. Try to keep healthy snacks

> available, and try to encourage smaller portions several times a day so

> that the hunger doesn't get out of control.

> Liz

>

> > " V. " wrote:

> > Hello all,

> > and thank you.

> >

> > Your words of support helped at a time of need.

> > Alot happened on this trip but I won't go into too much detail. They

> > did hospitalize Skyler. Still trying to get the kinks out of my neck

> > from sleping on one of those fold out chairs. Again we were the

> > novelty - Dr's coming from everywhere to see his 'stills rash'.

> > Though it was sort of theraputic talking to them and giving insight to

> > them from a parents perspective. Many were students who had not yet

> > selected a field. Needless to say I put in a word for certified

> > specialists in Rheumatology.

> >

> > Skyler is very glad to be home. And is (thanks to doubled Prelone

> > doses) up and around.

> > The word is this:

> > They put him on " an IV prednisone push " (high doses to get quick

> > results) and added Cyclosporin. His prelone dosage is doubled, they

> > added something for MTX side affects and decided to remove the Enbrel

> > in about a month (when the Cyclosporin should be working). They

> > detected an iregularity in his heartbeat and ran several ekg's &

> > echograms to check on pericarditis but dismissed it and said there was

> > no concern.

> > They wanted him to be placed in a hospital for another month to rehab

> > but after considering our situation, have prescribed 4 - 6 weeks of

> > Physical therapy outpatient locally (yet to be worked out with

> > insurance). We go to see an Eye Dr for opthamology next week and see

> > the regular Rheumi this Thursday.

> >

> > What they said is their results with Enbrel in Systemic cases has not

> > been very good. Some of what they said coincided with some of the

> > articles Georgina posted for us to read. I actually understood some

> > of what they were talking about!! Thanks Georgina.

> > So, now his immune system is very vulnerable and we have to arrange

> > special care for him for atleast 6 weeks and start rehab soon as

> > possible. While the Prelone is on high dose I can relax at nights and

> > sleep some more but we really need to get him on a reduction schedule

> > soon.

> >

> > Anyone out there have experience with Cyclosporin?

> >

> > Thanks alot all and again, God bless.

> >

> > Frazzled but stable,

> > [ & Skyler]

> >

> > PS special tanks to Jana - and

> > please keep my mother in prayers too.

[Guest guest]

Welcome back to the real world Andy,

What's your next project?

Best Wishes

Ian

Back Home

> Hi folks,

> Just to let you know that I'm back in circulation, having

> returned from the BUE tour of the North Sea. Will catch up with things

over

> the next couple of days.

>

> Andy

>

>

>

[Guest guest]

Hi Ian,

Next project -- relax !! Seriously though, the spine board trial

went well and we may be taking the boards again on the next vessels we go

on, also the re-designed Laerdal head immobilisers.

Nice to be back !

Andy

Back Home

>

>

> > Hi folks,

> > Just to let you know that I'm back in circulation, having

> > returned from the BUE tour of the North Sea. Will catch up with things

> over

> > the next couple of days.

> >

> > Andy

> >

> >

> >

[Guest guest]

Kathy,

It was sunny everyday that I was there. said I must have brought the

good weather with me cause they never go that long without rain.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: " UrthMan " <outerspace@...>

>< >

>Subject: back home

>Date: Sat, Jul 21, 2001, 8:36 PM

>

>Hi everyone,

>

>I am back home after 7 days in Watertown NY

>Take care,

>

> & Garry, parents of (10 ds), (9 ds), JJ (7

>ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

>

>

>Welcome Home!!! How was the weather in NY??

>Have a good rest.

>

>Kathy

>

>

>

[Guest guest]

I'm glad that you made it back home safety. I'm glad

that you had a good and a safe time. Glad you had

good weather.

>

>

> ----------

> >From: " UrthMan " <outerspace@...>

> >< >

> >Subject: back home

> >Date: Sat, Jul 21, 2001, 8:36 PM

> >

>

> >Hi everyone,

> >

> >I am back home after 7 days in Watertown NY

> >Take care,

> >

> > & Garry, parents of (10 ds), (9

> ds), JJ (7

> >ds/autism/celiac), (6 ds/ADHD/Celiac), and

> Esther (4 ds). All adopted.

> >

> >

> >Welcome Home!!! How was the weather in NY??

> >Have a good rest.

> >

> >Kathy

> >

> >

> >[Non-text portions of this message have been

> removed]

> >

> >

> >--------------------------------------------------

> >Checkout our homepage for information,

> bookmarks, and photos of

> >our kids. Share favorite bookmarks, ideas, and

> other information by

> >including them. Don't forget, messages are a

> permanent record of the

> >archives for our list.

>

> >--------------------------------------------

> >

> >

[Guest guest]

Thanks Raf..I needed that one today!! It helps me to realize alot of things..

[Guest guest]

Hi Raf

Be patient Drs. do things at their own pace. Glad to hear that your biopsy went well.

Happy Thanksgiving

[ ] Back Home

Good afternoon to all of you.

I just came home from the hospital. They did the biopsi but the doctor wanted me to stay at hospital for one night.

He was afraid for a bleeding liver.

I am a litle disapointed because the Dr is not in for 3 weeks. This means that I only will get the results on the 18th of december.

In one of the mails I saw the first step of the AA- program. I don't know if somebody here knows the serinty prayer ,

it helps me every day again:

GOD, Grant me the Serenity to accept the things I cannot change Courage to change the things I can and the Wisdom to know the difference

Greetings

Raf

[Guest guest]

I think there are quite a few of us familiar with that

prayer! They kept me for several hours after my biopsy

to make sure there was no bleeding also. It's very

frustrating waiting for test results, isn't it? I know

I am waiting right now for my last test results and

they aren't expected for a couple of weeks. But, like

you said, I have to accept the things I cannot change.

No point in fretting over it. I hope that your news is

good when you get it. -dz-

--- Raf <rafheule@...> wrote:

> Good afternoon to all of you.

>

>

> I just came home from the hospital. They did the

> biopsi but the doctor wanted me to stay at hospital

> for one night.

> He was afraid for a bleeding liver.

> I am a litle disapointed because the Dr is not in

> for 3 weeks. This means that I only will get the

> results on the 18th of december.

>

>

> In one of the mails I saw the first step of the AA-

> program. I don't know if somebody here knows the

> serinty prayer ,

> it helps me every day again:

>

> GOD,

> Grant me the Serenity

> to accept the things

> I cannot change

> Courage to change the

> things I can and the

> Wisdom to know the difference

>

>

>

> Greetings

>

>

>

> Raf

>

>

>

>

>

__________________________________________________

[Guest guest]

Welcome back, we have missed you... Kelley in Colorado

[Guest guest]

Donna,

Great big WELCOME HOME! Glad you are back where it is comfy (doesn't that make such a difference). I hope everything stays as it should be. Thinking of you always.

Loving hugs,

Cas and Tas

[Guest guest]

Hi,

Great news, to hear that you're back home again, Donna! I hope you're feeling

better real soon. Must admit, as worried as I was, 's message had me

giggling out loud. I just love those kids of typos :-) Loved Becki's message,

also. Spoken from the true voice of experience ;-) Are you one of those people

who tend to have very vivid dreams while taking high doses of steroids? Josh

used to describe some very detailed and intense scenarios to us.

Well, know that you are in our thoughts and we're all hoping for an uncomplicated

and speedy recovery.

With Love and Aloha,

Georgina

faces1999@... wrote:

Hey gang I wanted to drop a quick line and thank all for their

thoughts and prayers. Rusty thanks for keeping all posted even tho it was

not an enema I had (LMAO). Autoimmune hemolytic anemia is the corrected dx

and prognosis is still not known because the cause is still not for sure.

What I can tell everyone is I do feel better and being home sure is nice.

My routine will consists of high dose pred for awhile then I will taper down

so long as my hemoglobin responds correctly. I am on 60mgs per day so my

appetite has increased! I will be on a limited activities schedule and visit

with docs at least every 3-5 days for the first two weeks and those visits

will decrease as my hemoglobin improves. I will keep allposted and once again

many thanks for your thoughts and prayers! Donna

[Guest guest]

Hey Buffy!

Glad you made the trip! Ya had me worried there for a bit. I'm glad

it all worked out for you. So how was it? As beauiful as I have

heard?

Mike (No trips to to far away places....But, I still had fun!)

> Hi All,

>

> I hope you all had a nice July 4th weekend. I actually made it on

the

> plane and had a wonderful weekend. Aside from one dinner ruined by

> spasms, I had a pain free time.

> I was so sorry to read the posts about Bianka. Hopefully she is

> doing better now and on the road to recovery. I will be thinking

> about her.

> Hope you are all feeling ok today!

> Deb NJ

[Guest guest]

HA! In my dreams maybe! LOL I guess that's the risk you run when

you're in touch with your feminine side LMAO (wait till Biancka gets

home and reads that! She always laughs about my " feminine side "

jokes!)

Mike (or any other SEXY names you gals would like to put in here!)

> > Hi All,

> >

> > I hope you all had a nice July 4th weekend. I actually made it on

> the

> > plane and had a wonderful weekend. Aside from one dinner ruined

by

> > spasms, I had a pain free time.

> > I was so sorry to read the posts about Bianka. Hopefully she is

> > doing better now and on the road to recovery. I will be thinking

> > about her.

> > Hope you are all feeling ok today!

> > Deb NJ

>

>

>

>

>

>

[Guest guest]

BUFFY???????

I guess I better learn to share you. Seems like everyone around here

loves you! :-)

Sandi ¢¾

Re: Back home

Hey Buffy!

Glad you made the trip! Ya

had me worried there for a bit. I'm

glad

it all worked out for you.

So how was it? As beauiful

as I have

heard?

Mike (No trips to to far away places....But, I still had fun!)

> Hi All,

>

> I hope you all had a nice July 4th weekend. I actually made it on

the

> plane and had a wonderful weekend. Aside from one dinner ruined by

> spasms, I had a pain free time.

> I was so sorry to read the posts about Bianka. Hopefully she is

> doing better now and on the road to recovery. I will be thinking

> about her.

> Hope you are all feeling ok today!

> Deb NJ

[Guest guest]

You are sooo lucky! I lived there for 30 years and never saw a bear except once

through the binoculars a long ways in the distance at Yellowstone. AND I went to

Yellowstone at least every other year while there.

Pam

back home

I just got home after spending 5 days in Montana. Enjoyed myself very much

with a much needed vacation! Spent time with friends and did some sight

seeing. Got to see my first wild BEAR ever while at Yellowstone!

So Alice, you can put me back into receiving individual mail again.

susan & hobbes

michigan

[Guest guest]

Welcome back Patie.....

where did you go on vacation?

Patie <lilcia2001@...> wrote:

so i`m home again. i won`t say i`m very happy about it i`ve had great time on

vacations and realy loved being there. of course i missed home - especially that

i knew letters and new hp book are waiting for me lol. but i could live there,

realy! i loved sea, nights over the sea, walks, taking pics and just being

there... i hope i`ll come back there next year. maybe earlier, which i doubt,

but who knows...

so just that for now and take care

[Guest guest]

i`ve been in gdansk, it`s a big city over polish sea.

Re: back home

Welcome back Patie.....

where did you go on vacation?

Patie <lilcia2001@...> wrote:

so i`m home again. i won`t say i`m very happy about it i`ve had great time

on vacations and realy loved being there. of course i missed home - especially

that i knew letters and new hp book are waiting for me lol. but i could live

there, realy! i loved sea, nights over the sea, walks, taking pics and just

being there... i hope i`ll come back there next year. maybe earlier, which i

doubt, but who knows...

so just that for now and take care

[Guest guest]

do you have any of your pics from your trip online?

Later,

Mike Briggs

Photo Gallery: http://www.pbase.com/photogrif/

" Fish Gotta Swim, I Gotta Dive "

[Guest guest]

Sounds good , I sure hope she starts feeling better soon.

Yes, please keep us updated!

Darcy

On 9/2/06, revaddict <revaddict@...> wrote:

Hi, everybody,My wife and I got home last night from Mayo Clinic. The trip was wellworth it because we brought back a few answers to her health issues(we think).It seem that, among other problems, her bone marrow is not working as

efficiently as it should for someone her age. That's why she has hadlots of low blood counts and such lately. However, the hematologistis convinced this is because of some of the medication she is on. Right now she is getting off the meds that she can do without or is

looking for alternatives that won't affect bone marrow.We have to go back the week after next to do more about her migraineheadaches. We'll also have another trip at the end of the month. Butfor now things look promising.

Thanks for letting me keep you updated.

[Guest guest]

revaddict wrote:

> My wife and I got home last night from Mayo Clinic. The trip was well

> worth it because we brought back a few answers to her health issues

> (we think).

hi paul! keep your chin up, these trips are most certainly

worthwhile and im sure that your dw will start to feel better.

taking serious meds for a non-existant condition would certainly have

a negative effect. im very glad that this has been discovered and im

also really glad that she has you to lean on! take care,

:*carolyn.