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Joanne, I have not been tested for PSC, PBC, but I have been tested for fatty liver. I was told that my portal vein had mild to moderate inflammation. And that I had mild to moderate triaditis. Every time I have asked about these things, my doctor tells me that it just mean there is inflammation there. So I am assuming that I don't have PSC or PBC. At least I HOPE I don't.

I am thinking that the CT scan is to check on those areas. Since I have been having SO much pain right under the sternum, I am assuming that is what she is checking for. But that is just my best guess. I suppose I should have asked, but at this point in time, I have been hurting SOOO much that I really don't care WHAT tests she orders. I just want to get to the bottom of the full feeling and the nausea.

As for the butterfly, I am just going to insist on them. I realize they are more expensive and supposed to be used for children, but most tech cannot get into my veins. There are two at a lab in my town where I have been getting them, but I am going to just have the labs done at the hospital so that if I ever go in, my stats will be there. It is the hsoptial where I had the scopes done.

Before all of this stuff happened, I too never had problems with my veins. They were deep, but now, they just roll when they try to stick the needle in. For me....I am just not willing to have these massive bruises on my arms. The kids at school look in horror and ask me what happened! I just tell them I had to have a shot and they are happy with that! Aren't kids just WONDERFUL???????

debby

[ ] Debby

What other liver diseas's have you been tested for PBC??? PSC????? NASH????? Etc... I only have a butterfly needle done now because after so many years (since 1982) of having blood labs done at least every 3 months I am building up scar tissue and this makes it easier...before I had no problem with regular needle. Joanne

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Joanne,

Here is Virginia where I live they only use a butterfly. I have never had to

ask for one. I guess it's different every place you go.

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What the heck is beetroot????? I have NOT a clue! Sounds sort of gross to

me....anything with beets is gross! LOL debby

On Sun, 30 Jun 2002 21:27:40 -0700 (PDT) caroline mayne

<seajay192002@...> wrote:

Just for fun Debby  --- you should see what happens

when you pig out on beetroot, or pumpkin -----!!!!!

I looove betroot and when we had heaps of it I ate it

lots ----- thought i was very sick until I worked out

why !!!!!

Caroline NZ

__________________________________________________

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Yuck! I hate beets too!

Re: [ ] Debby

What the heck is beetroot????? I have NOT a clue! Sounds sort of gross

to

me....anything with beets is gross! LOL debby

On Sun, 30 Jun 2002 21:27:40 -0700 (PDT) caroline mayne

<seajay192002@...> wrote:

Just for fun Debby  --- you should see what happens

when you pig out on beetroot, or pumpkin -----!!!!!

I looove betroot and when we had heaps of it I ate it

lots ----- thought i was very sick until I worked out

why !!!!!

Caroline NZ

__________________________________________________

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Debby - That's about a 3 hr. drive from here I think. I used to work

in Merced and sometimes Madera. As for my GI, I'm currently be

monitored by a hepatologist in San Francisco (Dr. Bzowej), which is

just as far from me as Fresno. Eventually I will probably be seen by

the gastroenterologist who originally transferred me to S.F. (Dr.

Olson). - Annette

> > > > Shireen....great answer! I just know that the

butterfly is

> > easier

> > > on my arm....more expensive to the insurance, but worth

every

> > poke!

> > > > debby

> > > > [ ] What is a butterfly?

> > > > > >Date: Tue, 16 Jul 2002 12:14:36 EDT

> > > > > >

> > > > > >Debby - You had mentioned that you demand a

butterfly

> be

> > used

> > > when you

> > > > >have

> > > > > >your blood drawn. What exactly is a butterfly?

> > > > > >

> > > > > >

> > > > > >Thanks!

> > > > > >

> > > > > >Gayla in IL

> > > > >

> > > > >

> > > > >Amber Leonard

> > > > >

> > > >

> >

>_________________________________________________________________

> > > > >Chat with friends online, try MSN Messenger:

> > > http://messenger.msn.com

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> >

_________________________________________________________________

> > > > MSN Photos is the easiest way to share and print your

> photos:

> > > > http://photos.msn.com/support/worldwide.aspx

> > > >

> > > >

> > > >

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Annette, you are probably best in SF than here here in the valley. I found the doctors in Fresno are better than here in my hometown. The larger hospitals pick up the better doctors....at least that is what I tell myself. Good luck!

debby

[ ] What is a butterfly?> > > > > >Date: Tue, 16 Jul 2002 12:14:36 EDT> > > > > >> > > > > >Debby - You had mentioned that you demand a butterfly > be > > used > > > when you > > > > >have> > > > > >your blood drawn. What exactly is a butterfly?> > > > > >> > > > > >> > > > > >Thanks!> > > > > >> > > > > >Gayla in IL> > > > >> > > > >> > > > >Amber Leonard> > > > >> > > > > > >_________________________________________________________________> > > > >Chat with friends online, try MSN Messenger: > > > http://messenger.msn.com> > > > >> > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________> > > > MSN Photos is the easiest way to share and print your > photos: > > > > http://photos.msn.com/support/worldwide.aspx> > > > > > > > > > > >

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Gill,

My clinic insists that we do blood draws every month. To many things can happen in that time, and you should be followed by your doctor. I don't understand what they are doing. For myself I am owned by transplant and all my other medicines from every clinic I go to. As for your doctor telling you that mental confusion, and pain in your side is there and you do need to have the blood work done. I take medicine when I have mental confusion it is called Cholestyramine. I take it only when my mind goes hmmmmm being confused how do I know to take the drug. Most docs won't tell you much. I have heard from my docs that the less you know will protect some people not me. I ask for my lab reports every blood draw. I have learned a lot from my labs that I can check against the doctor. Makes the docs pay attention when you have the knowledge of your medical condition. Your pain is real. Make your doc listen to you. Ask questions until the doc sits down to explain.

gayle/trans.6-99

galye@... @`

\I/

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It is, I believe, Erythromyacin....not certain, but the rheumatologist shouldl know. Ask them if they have heard of the treatment. For my friend, it really works, but with Ty having suchh a bad stomach, that could be a problem.

debby

Re: [ ] debby

Hi debby.... No I haven't heard about this....although you didn't mention the name...so I guess I am not really sure...I might have.... but I think the main thing is that if it causes problems in the stomach then he would not be put on it....because his Crohns is in his entire digestive system....from one end to the other....sort to speak.... if you find out the name let me know...I would be interested in just knowing about it... thanks take care and talk soon Luanne Ty's mom

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Hi Debby...

Thanks for getting back to me about the med...Erythromyacin...hmmmm..no that has never been mentioned....

we are in the process of switching RA doctors at this point....the first one he had was excellent...he left and now works for the company that makes Remicade...that was after 1 yr of Ty being on it...he got married and then his wife got pregnant...and he decided he wanted to see his new family...so he went into research...he was a big loss....his partner took over with Ty...we liked her and so all was fine...but the new head of RA was someone we did not like at all....and now the partner is gone...and so we are switching over to the hosp where Ty has gone thru pre-tx evaluation...and will be going there eventually anyways...but for right now we are sticking with his GI doctor....we like him too much...it is going to be very tough to leave him...

we see the new RA docs in Oct....

take care and talk soon

Luanne Ty's mom

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Thank you Debby, I know would do the same for you.

She had her living donor transplant at Shands in Sept. and has had two serious infections since the transplant was done. She is doing much better.

God bless, Genny

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Hope you can get back to teaching soon.

debby

Hi Debby,

I wish I could but at this point it looks like it'll be a few years since I'm not healthy enough to work and fairly low on the MELD score. They tell me probably I won't be back until post-tx. Sure plays heck with retirement planning and money but hey, at least I have the chance to still be here at retirement so I don't feel I can complain too much - even though I do :)

Amy

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But Amy I thought this tx was going to be always. I guess I missed how long you have had AIH.

debby

From: holzboog@...

Sent: Sunday, November 10, 2002 1:51 PM

Subject: Re: [ ] Re: debby

Hope you can get back to teaching soon.debbyHi Debby, I wish I could but at this point it looks like it'll be a few years since I'm not healthy enough to work and fairly low on the MELD score. They tell me probably I won't be back until post-tx. Sure plays heck with retirement planning and money but hey, at least I have the chance to still be here at retirement so I don't feel I can complain too much - even though I do :)Amy

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Dear debby,

Difficult to hear something you weren't expecting. Have you asked your rhuemetologist why your joints are so achy? Why she decided to increase the prednisone, or if there are other options? Have you been diagnosed with any other autoimmune illnesses? There are many of them that prednisone helps during a flare. You may want to go back and find out some more information so that you understand - it may still be overwhelming but that's why we're here. We care.

Amy

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Amy, the doctor here says I could be the poster child for autoimmune diseases. Indeed there have been numerous dx of autoimmune problems. I spoke to my GI last night, and I will be going to my Rheumy later to see about other problems going on with my joints, etc so that we can find some meds to work other than prednisone. This will all happen in January, so it will be a while before I can talk with the doctor. I suppose I could make an appointment earlier, but just am so weary of going. We will see what happens.debby

[ ] Re: debby

Dear debby, Difficult to hear something you weren't expecting. Have you asked your rhuemetologist why your joints are so achy? Why she decided to increase the prednisone, or if there are other options? Have you been diagnosed with any other autoimmune illnesses? There are many of them that prednisone helps during a flare. You may want to go back and find out some more information so that you understand - it may still be overwhelming but that's why we're here. We care.Amy

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Hi debbie. i hear you are coming over to england. please remember you are very

welcome to stay with us for as long as you want. its not a 5 star hotel, but it

sure isnt quiet round here.

love

anita

>

> From: gill jones <furg692001@...>

> Date: Wed 01/Jan/2003 01:30 GMT

>

> Subject: [ ] Debby

>

> Hi Debby,

>

> Hey what a great Husband you have giving you a trip to

> England as a present. You shouldnt be put off at all

> by coming I just have a crappy doctor thats all!

> Anyway as you would have travel insurance, if you were

> to need medical help(which I hope you dont) you would

> be treat like royalty, believe me! Our country is

> gorgeous and I bet you would love it here.

>

> Take care

>

> Gill

> xxxx

>

>

>

> __________________________________________________

>

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Gill, I have the most WONDERFUL husband in the whole world! Of course,

everything hasn't been rosey all of our 29 years of marriage, but I love him

more than the day we married! Marriage is never easy, but I love him

dearly. He gave this present to me so that we could see our friends before

they became too ill to have company. One of our friends has had cancer and

the other is in poor health from Lupus. So, with my medical problems, I

WANT to go before I get to the point where I cannot go. That will be years

down the road, but I DO want to go now! My Ortho doc has told me that I

will need a new knee in a couple of years, and that will take one entire

summer out of my life! SOOOOOOOOO.......must take this summer for travel!

Oh....I can't wait to see the country again. I was there years ago, but

this has been a dream of ours for some time now, and it is going to come to

pass!

So, please tell of all of the places to go! I don't want the touristy

places, but the places where natives would go! That would be wonderful.

But, it is also good to know that if I do become ill that I would be treated

properly! My one friend who lives in Huddersfield works for Hospital so she

would be able to help me out, I imagine! I am glad to know there is a

special insurance that I can carry whilst over there.

Thanks for the info!

Debby

[ ] Debby

> Hi Debby,

>

> Hey what a great Husband you have giving you a trip to

> England as a present. You shouldnt be put off at all

> by coming I just have a crappy doctor thats all!

> Anyway as you would have travel insurance, if you were

> to need medical help(which I hope you dont) you would

> be treat like royalty, believe me! Our country is

> gorgeous and I bet you would love it here.

>

> Take care

>

> Gill

> xxxx

>

>

>

> __________________________________________________

>

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hi debbie, not a problem, us northerners are very friendly, unlike southerners.

at least thats what we think. down in the south you can live next door to

someone for years and never say hello. up here theres a pot of tea and extra

hands availavle as you unload your van and move in.

anita

>

> From: " tdcc " <tdcc2000@...>

> Date: Wed 01/Jan/2003 06:19 GMT

> < >

> Subject: Re: [ ] Debby

>

> Oh anita, you are sweet! I can't WAIT to get over there! It is a dream

> come true!

> Debby

>

>

>

>

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Anita, I believe my friend lives in the North. Indeed, she has her pot of

tea boiling all the time. It IS going to be fun!

Debby

Re: Re: [ ] Debby

> hi debbie, not a problem, us northerners are very friendly, unlike

southerners. at least thats what we think. down in the south you can live

next door to someone for years and never say hello. up here theres a pot of

tea and extra hands availavle as you unload your van and move in.

> anita

> >

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If your friend is a northener, then you will have a brilliant time. I hope we

can meet when you are over here, I can show you the delights of manchester, the

home of manchester united football team, oasis, and loads of other things. i

promise the kettle will be on. its the first thing we ask visitors. friends

just turn up, put the kettle on and make themselves at home. i love that.

love anita

>

> From: " tdcc " <tdcc2000@...>

> Date: Wed 01/Jan/2003 20:09 GMT

> < >

> Subject: Re: Re: [ ] Debby

>

> Anita, I believe my friend lives in the North. Indeed, she has her pot of

> tea boiling all the time. It IS going to be fun!

> Debby

> Re: Re: [ ] Debby

>

>

> > hi debbie, not a problem, us northerners are very friendly, unlike

> southerners. at least thats what we think. down in the south you can live

> next door to someone for years and never say hello. up here theres a pot of

> tea and extra hands availavle as you unload your van and move in.

> > anita

> > >

>

>

>

>

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Anita, Isn't Huddersfield and Hull northern? Debby

Re: Re: [ ] Debby

> >

> >

> > > hi debbie, not a problem, us northerners are very friendly, unlike

> > southerners. at least thats what we think. down in the south you can

live

> > next door to someone for years and never say hello. up here theres a

pot of

> > tea and extra hands availavle as you unload your van and move in.

> > > anita

> > > >

> >

> >

> >

> >

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hi debby, yes huddersfield and hull are up north. huddersfield is only an hours

drive from me and hull is a bit further. if you ever have an atlas that points

out the major cities, find manchester then cross ove to the right and up and yoy

will find hull near the coast. huddersfield is more central and away from the

coast.

hope this helps. you are guaranteed a warm welcome from all my friends, we are

a mad bunch, but i couldnt live without them. i dont have many very close

friends just a couple of very very close friends and lots of people i know.we

are very straight up north abd tell it like it is. but if anyones in trouble

there will always be people at your door offering help within minutes. i would

only ever live here.

love anita

>

> From: " tdcc " <tdcc2000@...>

> Date: Wed 01/Jan/2003 22:25 GMT

> < >

> Subject: Re: Re: [ ] Debby

>

> Anita, Isn't Huddersfield and Hull northern? Debby

> Re: Re: [ ] Debby

> > >

> > >

> > > > hi debbie, not a problem, us northerners are very friendly, unlike

> > > southerners. at least thats what we think. down in the south you can

> live

> > > next door to someone for years and never say hello. up here theres a

> pot of

> > > tea and extra hands availavle as you unload your van and move in.

> > > > anita

> > > > >

> > >

> > >

> > >

> > >

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,

I have both lupus, primary biliary cirrhosis (PBC) (diagnosed a week ago), pulmonary hypertension, diabetes, asthma, and high blood pressure. I have been seeing a nutritionist for 12 weeks (prerequisite for gastric bypass). I'm 60 years old and weigh 300 lbs (gained 45 lbs over the past 1 1/2 yrs due to pain, fatigue, and inactivity).

The nutritionist works closely with the GI surgeon and told me that all of the above health problems increases my chance of getting a GI bypass sooner than other people, so it all appears to be coming together. My appt. with the surgeon is in mid-April; after that, I should have the surgery within 6 weeks. I am so looking forward to living a more productive, pain-free life.

My primary care physicial told me last year I was on a down-hill spiral, healthwise, and needed to do something drastic or I would die (soon!). So the surgery will be a blessing. As for gaining all the weight back, the nutritionist (who runs a support clinic for patients of GI bypass) tells me hardly anyone does this. It is very dangerous to overeat. Also, that's why we see a nutritionist to tell us what to eat and what NOT to eat. Can't say I won't cheat every once in a while. But with only a thimble-sized stomach, you need to put the best possibly nutrients into your mouth in order to stay healthy.

My fatigue and joint/muscle pain is so overwhelming sometimes that it is difficult to get out of the bed. But if I quit work, I would totally deteriorate. My coworkers and boss are super-supportive and understanding. They know I work day-to-day. (I had told them I was going out on disability the first of this year but would hang on as long as I could...and I'm still there.)

My liver biopsy is in a few weeks to discern the damage. I haven't started on any medication(s) for PBC yet but the liver doc said I would as soon as he gets the results of the biopsy. So, am in for a rough spring/summer with "procedures" and surgery. But I look forward to a better quality of life than I have now.

Hope this helps on info re lupus/PBC/GI bypass.

Bev

Re: [ ] Debby

Debby,

Thank you. However, I really can't take the credit for getting the weight off. I have often said that the gastric bypass is the least painful 'diet' I have ever been on!

A gastric bypass is certainly not for everyone. It is major surgery and some people have serious complications or even die (as with any major surgery). I agree with you that a doctor telling me I have to buy his supplements is a major red flag! My surgeon is one of the kindest, most compassionate doctors I have ever known. He was the one responsible for getting my GI to pay attention to my elevated liver enzymes. Not only that, he has been there for me throughout all the health issues I have faced since July.

As for supplements, I take Vitamin B-12 2500 mcg sublingually once a week, one Centrum multivitamin daily, and Viactiv chews (calcium, vitamin D, vitamin K) three times a day. I was only taking two of the Viactiv chews prior to getting the AIH diagnosis and being put on prednisone. As far as gluten goes, I don't know if the supplements I take are gluten free but maybe you could find some that are.

It has only been 15 months since I had the gastric bypass so it is too early to know if down the road I will gain back the weight I lost. However, the nutritionist that I have worked with has told me that while some people do gain back around 10-15 lbs of what they lost, the majority of people do not. He says that you would really have to work at it to get back to the 100 lbs + overweight range. My sister has worked with this nutritionist off and on for probably 15 years. He was initially totally against the gastric bypass. He felt that the surgery was too risky. It has only been in the last 5 years or so that he changed his opinion on the gastric bypass.

Did your friends that gained the weight back have the roux-en-y gastric bypass or did they simply have stomach stapling? My sister has a friend that had only the stomach stapling. She lost over 100 lbs but then gained it back and more.

The best website I have found to get info on the gastric bypass is www.obesityhelp.com. There are hundreds of stories from people who have had the gastric bypass. Not everyone is happy about having it. Having the gastric bypass is a very personal decision. I thought about and gathered information for over a year before I decided it was the right decision for me.

For me, the gastric bypass was the right choice. I truly believe that I would be much sicker now if I had not gotten rid of the 100 lbs of excess weight I was carrying. I also know that the doctors can no longer blame my health problems on my weight, which I feel is often just a cop-out and a handy thing for doctors to blame things on. A lot of things are caused or made worse by being overweight. However, being overweight dose not cause lupus or AIH. The weight was not the cause of the pitting edema I have had in my legs for the last couple of years. It may have made it worse, but I'm not even sure of that.

I didn't know I had AIH when I had the gastric bypass. My surgeon was a little hesitant simply because I had lupus. I had to get a letter from my rheumy and my pcp stating that the lupus was under control and would not interfere with healing after the surgery. I'm not sure my surgeon would even consider doing the gastric bypass on someone with both lupus and AIH. I don't know enough about celiac sprue to know whether having it would keep someone from being a candidate for the gastric bypass. I know that I am glad I had it prior to finding out I have AIH and having to take prednisone.

Of course, it would have been better if I had been able to lose the excess weight without having major surgery. However, I had probably tried every diet known to man. Over the last 20 years, I probably gained and lost at least 500 lbs! I finally decided that the gastric bypass was the only way I was going to win the weight war. Whether I have won it for life is yet to be seen. Check back with me about 4-5 years from now and I'll let you know. :)

W

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Thank you for writing. Actually, I am not certain whether we will be coming in through Heathrow or Glasgow. We really have no desire to visit London but rather want to spend time with our friends in Hull and Huddersfield. If possible, we want to visit Liverpool and then take a short hop to Wales. It is all such beautiful country there! I am hoping to get tickets this week.....but the one problem with landing in London is that the hotels are so darned hard to book. That is why I think it would be easier to land in Glasgow! Oh well...if you have another suggestion, let me know. It would be fun to be able to have tea with everyone over there from the UK!

Debby

[ ] Debby

Hi Debby Leeds is about 200 miles north of London, in the middle of the country, about 60 miles north east of Manchester. You are right, Manchester is on the west side not that far from Liverpool.Are you flying into Heathrow or Gatwick maybe? A lot of people visiting England travel mainly in London and the south east for the well known tourist sites;I had an aunt living in London and loved visiting the famous places myself; it always seems really busy there. Unfortunately I don't drive, and public transport is rather expensive, which limits me.The problem in England is the uncertainty about the weather, we don't get anything extreme but it can be cloudy, and rain a lot, otherwise I think more people would holiday here.I'm hoping to persuade my mum to go to the seaside with me this summer;with my Dad being terminal we didn't go, and after he died I didn't feel like planning anything for a bit, and then I had the liver flare which left me unfit to bother for months, and then it was winter.Bet you are looking forward to your holslove, Pam - Leeds,EnglandAIH 2000

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