update

[Guest guest]

Mandy, Oh, honey, just forget that idiot doctor, and call and insist that you see or speak with the

Rheumatologist who knows your case. Get assertive, and tell the people who make the appointments

that you cannot wait that long for help. And, don't apologize for venting to US, honey, that's why

we're here. We have all been where you are in the process of living with this disease, and we have all

run into people who should never have passed the medical board exams. Instead of Hippocratic

Oath, I think they took the Hypocrit Oath. You rest up, believe in yourself and in what your body is

telling you. Ignore the ignorant, and keep pushing to get into the Rheumy's office sooner. We love

you, honey, and we're here when you need us. Loving hugs, MM

[Guest guest]

Cheryl J., Honey, never go out in the sunlight when taking an antibiotic. Secondly, what were you

doing out at an air show, anyway, with Lupus? Hmmmmm? Sun exposure or UV ray exposure is one

sure way to make yourself sicker. Please take more care in future, and wear sunscreen, and hats,

and long sleeves. Take care, Honey. Hugs, MM

[Guest guest]

--Cheryl- It's not exactly the sunburn that makes you sick, it's the

reaction that occurs (chemically) under the skin in those of us with

lupus. You can't see it or feel it happening, it sneaks up on you.

My doc said not to go without sunscreen even in the winter on a

cloudy day!!! Just wear sunscreen, it's really important.

- In LUPIES , " Cheryl " wrote:

> Believe it or not, the skin part of Lupus is one thing that I don't

> have, or haven't yet had. (Knock on wood). And, I am a goober, I

> haven't been at this long enough to know! But I do think that the

> exposure to the sun, not necessarily the sunburn issue or the skin

> issue, is what made me sick, maybe even aside from the

antibiotics. I

> normally try to stay away from the sun and heat, only because I

really

> don't like the heat (and, yes, I live in the South), but this is the

> first time in a long time that I have been out in the sun. I LOVE

> gardening, and I don't even do that in the heat of the day any

more.

> Can I attribute this to the FOG? :-) Thanks, MM, for the concern.

> You're great! Lots of hugs for everyone!

>

> Subject: Re: Update

>

> Cheryl J., Honey, never go out in the sunlight when taking an

> antibiotic.

> Secondly, what were you

> doing out at an air show, anyway, with Lupus? Hmmmmm? Sun

exposure

> or UV

> ray exposure is one

> sure way to make yourself sicker. Please take more care in future,

> and wear

> sunscreen, and hats,

> and long sleeves. Take care, Honey. Hugs, MM

>

>

> [This message contained attachments]

[Guest guest]

Hi,

Yes, we gave her a bath as soon as we got home. She was smiley

while in there as long as she sat perfectly still in one spot.

Started screaming as soon as I washed her...and she NEEDED a good

washing!

Marilouise

9/9/03, LCF, DBB 23/7

Owen and 3/20/99

> Man, that message breaks my heart. Can you soak her in a warm

bath?

> s.

>

> update

>

>

> Hi all,

> I really need the advice and support of you veterns on here.

> Feeling the " mean mommy " emotions 100% after 's appt today.

>

> saw Dr Herzenberg today to have her 3 week cast removed.

> She did really well through the sawing (NO tears at all) but

> the " wedging " it off made her scream. I quickly figured out it

was

> the sensations on her leg and foot. Well she was hysterical after

> that. Sobbing and trying to climb up me away from everybody

else.

> Dr H checked out her foot and was very pleased. I have to say

that

> her foot looks AMAZING to me!! Her medial crease is just like a

> crease in your palm now, her foot is externally rotated very well

> and Dr H said she has 15 degrees of dorsiflexion! Her foot is

> straight -- no more kidney bean!

> Okay so anyway, the whole time Dr H is checking her foot, she is

> shaking and reaching to move his hand away and just crying

> miserably. He put the DBB on and she just cried harder. My heart

> was absolutely breaking! She calmed down once I finally got her

> back in her stroller (had to PEEL her off my chest) and she knew

we

> were leaving but everytime I moved her she would just cry (an in-

> pain cry). I know it's her skin being sensitive and her leg is

> likely stiff but how long does it take for this to go away? She

was

> not like this after her first casting series as an infant.

> She tried to crawl when we got home and literally collapsed on the

> floor sobbing. She won't put any weight on her leg or foot and

any

> touch sends her into tears. Oh, and if I try to stretch her foot

> like Dr H showed me, she SCREAMS! Any inward/outward or up/down

> movement.

> Oh, and she's back to 23/7 for two months. Anybody do that time

> with an almost-walker? Any tips for teaching her to pull up or

even

> go from crawling to sitting in it? Does she just have to learn?

>

> Sorry so long.

>

> Marilouise

> 9/9/03, LCF, DBB 23/7

> Owen and 3/20/99

>

>

>

>

>

[Guest guest]

Hi,

Yes, we gave her a bath as soon as we got home. She was smiley

while in there as long as she sat perfectly still in one spot.

Started screaming as soon as I washed her...and she NEEDED a good

washing!

Marilouise

9/9/03, LCF, DBB 23/7

Owen and 3/20/99

> Man, that message breaks my heart. Can you soak her in a warm

bath?

> s.

>

> update

>

>

> Hi all,

> I really need the advice and support of you veterns on here.

> Feeling the " mean mommy " emotions 100% after 's appt today.

>

> saw Dr Herzenberg today to have her 3 week cast removed.

> She did really well through the sawing (NO tears at all) but

> the " wedging " it off made her scream. I quickly figured out it

was

> the sensations on her leg and foot. Well she was hysterical after

> that. Sobbing and trying to climb up me away from everybody

else.

> Dr H checked out her foot and was very pleased. I have to say

that

> her foot looks AMAZING to me!! Her medial crease is just like a

> crease in your palm now, her foot is externally rotated very well

> and Dr H said she has 15 degrees of dorsiflexion! Her foot is

> straight -- no more kidney bean!

> Okay so anyway, the whole time Dr H is checking her foot, she is

> shaking and reaching to move his hand away and just crying

> miserably. He put the DBB on and she just cried harder. My heart

> was absolutely breaking! She calmed down once I finally got her

> back in her stroller (had to PEEL her off my chest) and she knew

we

> were leaving but everytime I moved her she would just cry (an in-

> pain cry). I know it's her skin being sensitive and her leg is

> likely stiff but how long does it take for this to go away? She

was

> not like this after her first casting series as an infant.

> She tried to crawl when we got home and literally collapsed on the

> floor sobbing. She won't put any weight on her leg or foot and

any

> touch sends her into tears. Oh, and if I try to stretch her foot

> like Dr H showed me, she SCREAMS! Any inward/outward or up/down

> movement.

> Oh, and she's back to 23/7 for two months. Anybody do that time

> with an almost-walker? Any tips for teaching her to pull up or

even

> go from crawling to sitting in it? Does she just have to learn?

>

> Sorry so long.

>

> Marilouise

> 9/9/03, LCF, DBB 23/7

> Owen and 3/20/99

>

>

>

>

>

[Guest guest]

Hi,

Yes, we gave her a bath as soon as we got home. She was smiley

while in there as long as she sat perfectly still in one spot.

Started screaming as soon as I washed her...and she NEEDED a good

washing!

Marilouise

9/9/03, LCF, DBB 23/7

Owen and 3/20/99

> Man, that message breaks my heart. Can you soak her in a warm

bath?

> s.

>

> update

>

>

> Hi all,

> I really need the advice and support of you veterns on here.

> Feeling the " mean mommy " emotions 100% after 's appt today.

>

> saw Dr Herzenberg today to have her 3 week cast removed.

> She did really well through the sawing (NO tears at all) but

> the " wedging " it off made her scream. I quickly figured out it

was

> the sensations on her leg and foot. Well she was hysterical after

> that. Sobbing and trying to climb up me away from everybody

else.

> Dr H checked out her foot and was very pleased. I have to say

that

> her foot looks AMAZING to me!! Her medial crease is just like a

> crease in your palm now, her foot is externally rotated very well

> and Dr H said she has 15 degrees of dorsiflexion! Her foot is

> straight -- no more kidney bean!

> Okay so anyway, the whole time Dr H is checking her foot, she is

> shaking and reaching to move his hand away and just crying

> miserably. He put the DBB on and she just cried harder. My heart

> was absolutely breaking! She calmed down once I finally got her

> back in her stroller (had to PEEL her off my chest) and she knew

we

> were leaving but everytime I moved her she would just cry (an in-

> pain cry). I know it's her skin being sensitive and her leg is

> likely stiff but how long does it take for this to go away? She

was

> not like this after her first casting series as an infant.

> She tried to crawl when we got home and literally collapsed on the

> floor sobbing. She won't put any weight on her leg or foot and

any

> touch sends her into tears. Oh, and if I try to stretch her foot

> like Dr H showed me, she SCREAMS! Any inward/outward or up/down

> movement.

> Oh, and she's back to 23/7 for two months. Anybody do that time

> with an almost-walker? Any tips for teaching her to pull up or

even

> go from crawling to sitting in it? Does she just have to learn?

>

> Sorry so long.

>

> Marilouise

> 9/9/03, LCF, DBB 23/7

> Owen and 3/20/99

>

>

>

>

>

[Guest guest]

Doug, I know you have to make some decisions. But you know with the

new medicines always comeing out there is always the chance of better

survival. You have to do some real soul searching. I am so sorry you

are having to deal with this. But never give up hope. Others have

survived. You may too. You never know. Put your trust in God and

Pray!! I will Pray for you also. God Be With YOU!!! Ingrid

> Been going thru alot of tests the last 2 weeks, pet scan, bone scan

and

> a cat scan today. They`ve more more cancer in 3 other areas, a spot

> between the shoulder and ribs, the adreanal? glands that controls

the

> kidneys and a spot on the lower spinal cord. Now they`re talking

about

> doing a biopasi on one of the places to see if it`s from the

origanal

> colon cancer or a different type that has appeared.

> Now all I have to do is figure out if I want to cantinue all of

this or

> not, seen my mom and brother go thru it and still lost them. Think

I

> rather spend the time with my family instead of the hospital or in

bed

> at home sick from the treatments their talking about.

> I wish all of you going through this luck with your treatments and

hope

> everyone has a long and happy life.

>

> Doug

[Guest guest]

Doug, I know you have to make some decisions. But you know with the

new medicines always comeing out there is always the chance of better

survival. You have to do some real soul searching. I am so sorry you

are having to deal with this. But never give up hope. Others have

survived. You may too. You never know. Put your trust in God and

Pray!! I will Pray for you also. God Be With YOU!!! Ingrid

> Been going thru alot of tests the last 2 weeks, pet scan, bone scan

and

> a cat scan today. They`ve more more cancer in 3 other areas, a spot

> between the shoulder and ribs, the adreanal? glands that controls

the

> kidneys and a spot on the lower spinal cord. Now they`re talking

about

> doing a biopasi on one of the places to see if it`s from the

origanal

> colon cancer or a different type that has appeared.

> Now all I have to do is figure out if I want to cantinue all of

this or

> not, seen my mom and brother go thru it and still lost them. Think

I

> rather spend the time with my family instead of the hospital or in

bed

> at home sick from the treatments their talking about.

> I wish all of you going through this luck with your treatments and

hope

> everyone has a long and happy life.

>

> Doug

[Guest guest]

Rose, that is great news! So glad that things went well............

Hugs,

DarleneNS Co-Owner/Moderator

Hi, everybody. I'm back home from Indianapolis. My daughter Theresa's knee surgery went well & she was able to go home after a few hours. Thanks to everyone for their prayers & good wishes.

Ramblin' Rose

Moderator

[Guest guest]

Rose, that is great news! So glad that things went well............

Hugs,

DarleneNS Co-Owner/Moderator

Hi, everybody. I'm back home from Indianapolis. My daughter Theresa's knee surgery went well & she was able to go home after a few hours. Thanks to everyone for their prayers & good wishes.

Ramblin' Rose

Moderator

[Guest guest]

Rose, that is great news! So glad that things went well............

Hugs,

DarleneNS Co-Owner/Moderator

Hi, everybody. I'm back home from Indianapolis. My daughter Theresa's knee surgery went well & she was able to go home after a few hours. Thanks to everyone for their prayers & good wishes.

Ramblin' Rose

Moderator

[Guest guest]

Good to hear that Rose!

grannylunatic@...

__________________________________________

Yahoo! DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.yahoo.com

[Guest guest]

Rick,

I used to be (in the 1990s) on a three years cycle for a spike in liver enzymes. I was always concerned when the numbers were high, but my numbers have always returned to " my normal " . I have not figured out a cause for the spike nor experence any symptoms that suggest the numbers are high.

Ian (52) PSC 89

I had posted several weeks ago about my Dr's concern that I may have CCA. At the time, I had my first spike in bilirubin from .6 total up to 1.5 total in 3 months time. My GI was concerned about blockage

caused by CCA so we did an ultrasound which showed the liver as normal and ruled out gallstones.Since then, I have had 1 round of repeat bloodwork. That bloodwork showed that bilirubin had decreased slightly and was back in

the " normal " range while the other LFT's also showed minor improvement.I'm not sure how to interpret this and my GI hasn't been offering a lot of information on this over the last month, but I am thinking

that it is good news that the bilirubin has decreased. As for the concern of cancer - we haven't done anything else to rule it out yet other than bloodwork and ultrasound. I just got faxed over another followup bloodtest sheet today - it

looks like we're on a 2-3 week schedule for re-checking LFT's - so I should have results for those soon. I know that I'll probably have a followup appt with my GI soon after the bloodwork comes back - but I

am wondering what some of you more seasoned PSCers think about this case and whether you would be concerned and/or if you would have any specific questions that you think should be asked or tests taken.Thanks for listening and for your feedback.

Rick -- Ian Cribb P.Eng.

[Guest guest]

This disease can be riddled with worrying about one

thing or another. I recall when I had my refferal to

a Hep doc, my office notes indicated 'rule out cca'

and that freaked me out. After a few 'scares' like

that I chose to not get worked up about it until a

doctor says 'you have, or there is a mass', otherwise

you are spinning your wheels over what could be

nothing at all.

I've had my bili up over 3 before and then it came

down, I think there is a alphfeta protein test (I am

saying or spelling it wrong, but that test gives a

clue to cca if it is elevated....but then again, not

always) It would be a series of tests and procedures

to make a difinitive dx.

Cindy Baudoux-Northrup

[Guest guest]

Rick,

A year or so ago we saw some suspicious spots on my routine MRCP. We

increased the frequency of the MRCPs to watch for changes, my hep added

the CA-19-9 and CEA tests to my regular bloodwork, and we got some

scrapings during my latest ERCP. Mercifully, all have been negative so

far, but once the " C " word comes up, it's a little hard to shake the

heebie-geebies.

Peace,

Bill Wise

PSC '00, Listed TX '04

[Guest guest]

Rick,

I am a little surprised your GI mentioned cancer based on an increase

in your bilirubin from .6 to 1.5. In a patient with PSC this really

is not a significant increase although when I was newly diagnosed

this would have caused me concern as well.

I have seen my bilirubin go from 1.5 to over 7 in a matter of weeks.

This is just the nature of PSC. As your ducts become further damaged

your liver looses the ability to get rid of this bilirubin and

jaundice ensues. As the disease progresses it would be expected to

see these sudden increases due to blocages caused by stones,

strictures or cholangitis. Usually time, antibiotics or ERCP can

help resolve this but over time your bilirubin will increase and this

does not mean the reason is cancer. The reason is just the fact you

have PSC. Cancer of course is a concern for all of us but expect

these symptoms in the absence of cancer as well.

Don't worry too much if your bilirubin incerases slightly like this.

PSC is still a slowley progressing disease. I have had it for 8

years that I know of and my bilirubin has been over 1.5 for most of

that time. It is only recently that it has started going higher and

staying higher. I still probably have several years to go before a

transplant is necessary.

in Seattle

>

> I had posted several weeks ago about my Dr's concern that I may

have

> CCA. At the time, I had my first spike in bilirubin from .6 total

up

> to 1.5 total in 3 months time. My GI was concerned about blockage

> caused by CCA so we did an ultrasound which showed the liver as

> normal and ruled out gallstones.

>

> Since then, I have had 1 round of repeat bloodwork. That bloodwork

> showed that bilirubin had decreased slightly and was back in

> the " normal " range while the other LFT's also showed minor

> improvement.

>

> I'm not sure how to interpret this and my GI hasn't been offering a

> lot of information on this over the last month, but I am thinking

> that it is good news that the bilirubin has decreased. As for the

> concern of cancer - we haven't done anything else to rule it out

yet

> other than bloodwork and ultrasound.

>

> I just got faxed over another followup bloodtest sheet today - it

> looks like we're on a 2-3 week schedule for re-checking LFT's - so

I

> should have results for those soon. I know that I'll probably have

a

> followup appt with my GI soon after the bloodwork comes back - but

I

> am wondering what some of you more seasoned PSCers think about this

> case and whether you would be concerned and/or if you would have

any

> specific questions that you think should be asked or tests taken.

>

> Thanks for listening and for your feedback.

>

> Rick

>

[Guest guest]

I had a 1.6 bili with my gallbladder attack before it was removed.There was no talk of ca from my GI doc.

Re: Update

>

[Guest guest]

I had a 1.6 bili with my gallbladder attack before it was removed.There was no talk of ca from my GI doc.

Re: Update

>

[Guest guest]

I had a 1.6 bili with my gallbladder attack before it was removed.There was no talk of ca from my GI doc.

Re: Update

>

[Guest guest]

My bilirubin was a 14 last summer and not talk of cancer was brought up

either. Mine is holding at a 7 now

Liz in Ct

>

> I had a 1.6 bili with my gallbladder attack before it was

removed.There was  no talk of ca from my GI doc.

>

>

>

> Re: Update

>

>

>  >

>

[Guest guest]

My bilirubin was a 14 last summer and not talk of cancer was brought up

either. Mine is holding at a 7 now

Liz in Ct

>

> I had a 1.6 bili with my gallbladder attack before it was

removed.There was  no talk of ca from my GI doc.

>

>

>

> Re: Update

>

>

>  >

>

[Guest guest]

My bilirubin was a 14 last summer and not talk of cancer was brought up

either. Mine is holding at a 7 now

Liz in Ct

>

> I had a 1.6 bili with my gallbladder attack before it was

removed.There was  no talk of ca from my GI doc.

>

>

>

> Re: Update

>

>

>  >

>

[Guest guest]

Rudy joyce

making contacts with doctors' offices is very frustrating, push lots of buttons, wait on hold,

then when you do have an appt, it is "hurry up and wait" lol

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: updateTo: "Breathe-Support" <Breathe-Support >Date: Saturday, January 31, 2009, 12:34 AM

Saw my pulmonologist today. He seemed a bit irritated that I am going to Jewish but red faced said he wanted to see their suggestions and results. I told him about how I have been experiencing days when I feel like I am suffocating and he seemed concerned. He raised my oxygen. Still trying to make contact with Jewish hospital. They call when I am not home and then tell me to call back as soon as possible and all I get is voice mail saying they will get back to me withing 24-48 hours..I never get to make contact. I have to leave the house. I have places I have to go and I have to run around to get all the stuff they requested! This is most discouraging! Blue Flyer Joyce AZ IPF 11-08

[Guest guest]

Rudy joyce

making contacts with doctors' offices is very frustrating, push lots of buttons, wait on hold,

then when you do have an appt, it is "hurry up and wait" lol

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: updateTo: "Breathe-Support" <Breathe-Support >Date: Saturday, January 31, 2009, 12:34 AM

Saw my pulmonologist today. He seemed a bit irritated that I am going to Jewish but red faced said he wanted to see their suggestions and results. I told him about how I have been experiencing days when I feel like I am suffocating and he seemed concerned. He raised my oxygen. Still trying to make contact with Jewish hospital. They call when I am not home and then tell me to call back as soon as possible and all I get is voice mail saying they will get back to me withing 24-48 hours..I never get to make contact. I have to leave the house. I have places I have to go and I have to run around to get all the stuff they requested! This is most discouraging! Blue Flyer Joyce AZ IPF 11-08

[Guest guest]

Alyssa- it's important to do what you need to do to heal, including meds if

necessary. The originator of the diet did not say to use the diet instead of

meds. Some people have made that decision- presumably at a time when they are

feeling well, some after a long time on this diet, some sooner- but all are

different.

I hope all goes well with the doctor today- and that you feel well soon.

PJ

>

> Okay, so I still have diarrhea. Ugh. How long is the initial detox

> supposed to last after getting back on the diet? I've had D for a few

> weeks now, and it's bloody too. We (my parents and I) have decided

> that I won't change my diet at this point, and are now looking at

> other non-diet options. (Yeah, meds, etc...can't believe it, right?

> =) ) What I'm eating now are fish, poultry, beef, baked apples and

> pears, occasional ripe banana, cooked green beans, cooked carrots,

> cooked squash (summer and winter), eggs, 1/2 and 1/2 yogurt, and hard

> cheeses. No nuts for now. Well, and of course things like honey,

> butter, oils, mustard, salt, etc... You know, condiment type things.

> No ketchup though.

>

> I'm going to the doctor (regular) and accupuncturist today. With my

> doctor, we're going to look at some of our options such as LDN and b12

> shots since people seem to have success with those. On the crohns/

> colitis yahoo group, some people have mentioned pH treatment of IBD

> where you take a supplement to increase your pH. I'm not sure if this

> is the baking soda thing or not, so I'm going to learn more about that

> too as a possible option. I'll let you know how things go, and any

> additional advice is appreciated!

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC April 2008, diagnosed Sept 2008

> SCD June 2009 (restarted)

> No meds!!!

>