Re: Tx Clinic Problems, Concerns, PSC Problems

[Guest guest]

Hi Laurie,

I'm sorry to hear you are feeling so ill. I am suffering from fatigue,

nausea URQ pain. I am a nurse but since August I have been out of work.

There just isn't any way I can keep my eyes open by mid-morning. I get up

at 6:30 in the morning with the kids and get them off to school but by 11 I

am dead. I fall asleep by 8pm every night. I am finding this very

frustrating too. Even just 6 months ago I was such a busy person it kills

me to not to be able to do what I used to. I eat pretty well and just rest

as much as I can. Don't wait until you can't take the activity anymore. If

you feel that you need rest YOU DO! Take care.

>From: Oceandrmer@...

>Reply-To: egroups

>To: egroups

>Subject: Tx Clinic Problems, Concerns, PSC Problems

>Date: Fri, 8 Oct 1999 07:18:56 EDT

>

>I had a msg on my machine when I got home fr work yesterday from my case

>mgr

>of my HMO saying she had JUST rec'd a call from the tx clinic that I had

>not

>kept my 8/12 appt and why and what is going on. I called & left her a

>voice

>msg she will get when she gets to work today. I'm really UPSET!! As my

>msg

>to her states, I never had an 8/12 appt, my last one was 7/13, at which

>time

>they scheduled me for 10/11, which is this Monday which I am keeping. I

>went

>on to tell her that I am and have been very unhappy w/them, that I felt

>better when going to Mayo Clinic, that when I have problems or concerns I

>never get a response from Omaha. When I was being seen by Mayo drs. &

>called

>w/a problem or concern I got a response within 2 days and usually the same

>day. I told her I wanted to know who called her, wanted her to get things

>straightened out and give me a call at work today.

>

>I am having ultra sound Monday, seeing my dr and am again going to visit

>w/the ins. guy there to see if HMO is really the way to go. He asked me to

>bring all of the brochures of insurance plans that are available to me, so

>I

>am. My son said something that got me thinking, though. Since I felt

>better

>when going to Mayo, shouldn't I have that conference w/their people? It

>seems to me that Mayo is concerned w/what's best for the individual patient

>as the PSC progresses and how they are doing at the time. At Omaha I feel

>all they are checking is whether or not I am ready to be listed and not

>concerned with how I am doing now and trying to help me feel the best I

>can.

>

>Problems Now: sleep (lack of), fatigue, exhaustion (which is why I haven't

>been on line lately). In general, feel cruddy. Bouts of distention,

>chills,

>itching, etc, etc.

>

>Won't make this msg any longer - sorry for its length.

>

>Anyone have any suggestions on any of the above? Drs - where to go?

>Fatigue

>- what to do? I'm seriously thinking about either lying down during the

>day

>when needed at work, working shorter days for awhile and/or time off until

>things calm down. At wits' end and not too optimisitic about Monday's

>appt.

>either.

>

>Laurie

>

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

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

______________________________________________________

[Guest guest]

Hi Laurie,

I'm sorry to hear you are feeling so ill. I am suffering from fatigue,

nausea URQ pain. I am a nurse but since August I have been out of work.

There just isn't any way I can keep my eyes open by mid-morning. I get up

at 6:30 in the morning with the kids and get them off to school but by 11 I

am dead. I fall asleep by 8pm every night. I am finding this very

frustrating too. Even just 6 months ago I was such a busy person it kills

me to not to be able to do what I used to. I eat pretty well and just rest

as much as I can. Don't wait until you can't take the activity anymore. If

you feel that you need rest YOU DO! Take care.

>From: Oceandrmer@...

>Reply-To: egroups

>To: egroups

>Subject: Tx Clinic Problems, Concerns, PSC Problems

>Date: Fri, 8 Oct 1999 07:18:56 EDT

>

>I had a msg on my machine when I got home fr work yesterday from my case

>mgr

>of my HMO saying she had JUST rec'd a call from the tx clinic that I had

>not

>kept my 8/12 appt and why and what is going on. I called & left her a

>voice

>msg she will get when she gets to work today. I'm really UPSET!! As my

>msg

>to her states, I never had an 8/12 appt, my last one was 7/13, at which

>time

>they scheduled me for 10/11, which is this Monday which I am keeping. I

>went

>on to tell her that I am and have been very unhappy w/them, that I felt

>better when going to Mayo Clinic, that when I have problems or concerns I

>never get a response from Omaha. When I was being seen by Mayo drs. &

>called

>w/a problem or concern I got a response within 2 days and usually the same

>day. I told her I wanted to know who called her, wanted her to get things

>straightened out and give me a call at work today.

>

>I am having ultra sound Monday, seeing my dr and am again going to visit

>w/the ins. guy there to see if HMO is really the way to go. He asked me to

>bring all of the brochures of insurance plans that are available to me, so

>I

>am. My son said something that got me thinking, though. Since I felt

>better

>when going to Mayo, shouldn't I have that conference w/their people? It

>seems to me that Mayo is concerned w/what's best for the individual patient

>as the PSC progresses and how they are doing at the time. At Omaha I feel

>all they are checking is whether or not I am ready to be listed and not

>concerned with how I am doing now and trying to help me feel the best I

>can.

>

>Problems Now: sleep (lack of), fatigue, exhaustion (which is why I haven't

>been on line lately). In general, feel cruddy. Bouts of distention,

>chills,

>itching, etc, etc.

>

>Won't make this msg any longer - sorry for its length.

>

>Anyone have any suggestions on any of the above? Drs - where to go?

>Fatigue

>- what to do? I'm seriously thinking about either lying down during the

>day

>when needed at work, working shorter days for awhile and/or time off until

>things calm down. At wits' end and not too optimisitic about Monday's

>appt.

>either.

>

>Laurie

>

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

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

______________________________________________________

[Guest guest]

Dear Laurie,

You seem to me that you are having symptoms of a cholangitis attack. ie:

chills,

itching, feeling cruddy. Are you showing any signs of jaundice or fever? Phil

felt the way you are feeling a few weeks before he had his first attack and was

diagnosed. Is their a Kaiser facility anywhere near you. I don't think they

are

in the midwest. We are so happy with them. Can you go back to Mayo? If you

can

I think I would certainly try. You seem to have much worse symptoms than Phil

and he is on disability and getting listed (at least I think so) Our

philosphophy is that we get him listed so he gets his time in. He can be put on

hold but still accrue necessary time. We are not

anxious for a transplant at this time but feel that is a step we have to take to

insure that he can have a transplant when needed. I think you can even refuse a

transplant when the time comes, I believe that's what Tim did and then had one

when the timing was better and he was more ready for it (correct me Tim if I'm

wrong).

I also think that Phil's not working really has helped because he can rest when

needed. It would probably be good to hand on to your job but I would definately

look into rest periods or some time off if you can. I forgot, what do you do?

Phil didn't have a job when he went on disability so it was different. It's

very

hard living on my salary (which is less than 1/2 of what Phil made) and his

disability but his quality of life is more important.

Well I don't know if any of this helps. But most of all I'll pray for you to

feel better and get the help you need.

Love,

Peg

Oceandrmer@... wrote:

> I had a msg on my machine when I got home fr work yesterday from my case mgr

> of my HMO saying she had JUST rec'd a call from the tx clinic that I had not

> kept my 8/12 appt and why and what is going on. I called & left her a voice

> msg she will get when she gets to work today. I'm really UPSET!! As my msg

> to her states, I never had an 8/12 appt, my last one was 7/13, at which time

> they scheduled me for 10/11, which is this Monday which I am keeping. I went

> on to tell her that I am and have been very unhappy w/them, that I felt

> better when going to Mayo Clinic, that when I have problems or concerns I

> never get a response from Omaha. When I was being seen by Mayo drs. & called

> w/a problem or concern I got a response within 2 days and usually the same

> day. I told her I wanted to know who called her, wanted her to get things

> straightened out and give me a call at work today.

>

> I am having ultra sound Monday, seeing my dr and am again going to visit

> w/the ins. guy there to see if HMO is really the way to go. He asked me to

> bring all of the brochures of insurance plans that are available to me, so I

> am. My son said something that got me thinking, though. Since I felt better

> when going to Mayo, shouldn't I have that conference w/their people? It

> seems to me that Mayo is concerned w/what's best for the individual patient

> as the PSC progresses and how they are doing at the time. At Omaha I feel

> all they are checking is whether or not I am ready to be listed and not

> concerned with how I am doing now and trying to help me feel the best I can.

>

> Problems Now: sleep (lack of), fatigue, exhaustion (which is why I haven't

> been on line lately). In general, feel cruddy. Bouts of distention, chills,

> itching, etc, etc.

>

> Won't make this msg any longer - sorry for its length.

>

> Anyone have any suggestions on any of the above? Drs - where to go? Fatigue

> - what to do? I'm seriously thinking about either lying down during the day

> when needed at work, working shorter days for awhile and/or time off until

> things calm down. At wits' end and not too optimisitic about Monday's appt.

> either.

>

> Laurie

>

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

>

> eGroups.com home: /group/

> - Simplifying group communications

[Guest guest]

Laurie,

As Peg said you seem to be suffering from advancing symptoms of

liver failure caused by PSC. She was correct in saying I was on

the transplant list, was called and decided to wait. A little

over a year later I went back on the active list. I would

strongly recomend that you work with your doctors to get listed.

The symptoms seem to accelerate once you start feeling really

fatigued.

I have no idea of how flexible your job with the court is or how

much you value it. Keeping actively involved as a member of

society is as important to my health as keeping rested. So I

worked full time as long as I could. I was able to arrange 3 day

weeks when the fatigue became too great. (My commute distance

made shorter days impractical). I'd suggest arranging whatever

way you can for the rest you need. Be it naps, days off, short

days, etc.

I'm not a big fan of ultrasound for investigating the liver. It

may pick up some big structures and be really easy - not

invasive, no special prep - but most of the time it doesn't

reveal what is going on in the ducts. There are things it is

good at - blood flow, and large density differences - so if that

is what is needed, its a good test.

Tim ltx 4/4/98

=====

__________________________________________________

[Guest guest]

Thank you Peg, & Tim for your responses to my above msg. I'm thinking

very strongly of changing insurance companies during open season (it won't be

effective until Jan. 2000) & going back to Mayo. Will see what happens on

Mon, 10/11.

If I could just combat the fatigue to where I can have a half-way " normal "

life, I would be ecstatic (sp?).

Laurie

[Guest guest]

Laurie,

I think the only way to combat the fatigue is to rest when you need to. That's

what Phil does and he is very active now but in his own time. Hope you feel

better soon.

Peg

Oceandrmer@... wrote:

> Thank you Peg, & Tim for your responses to my above msg. I'm thinking

> very strongly of changing insurance companies during open season (it won't be

> effective until Jan. 2000) & going back to Mayo. Will see what happens on

> Mon, 10/11.

>

> If I could just combat the fatigue to where I can have a half-way " normal "

> life, I would be ecstatic (sp?).

>

> Laurie

>

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

>

> eGroups.com home: /group/

> - Simplifying group communications

[Guest guest]

Laurie,

I think the only way to combat the fatigue is to rest when you need to. That's

what Phil does and he is very active now but in his own time. Hope you feel

better soon.

Peg

Oceandrmer@... wrote:

> Thank you Peg, & Tim for your responses to my above msg. I'm thinking

> very strongly of changing insurance companies during open season (it won't be

> effective until Jan. 2000) & going back to Mayo. Will see what happens on

> Mon, 10/11.

>

> If I could just combat the fatigue to where I can have a half-way " normal "

> life, I would be ecstatic (sp?).

>

> Laurie

>

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

>

> eGroups.com home: /group/

> - Simplifying group communications

[Guest guest]

Laurie,

I think the only way to combat the fatigue is to rest when you need to. That's

what Phil does and he is very active now but in his own time. Hope you feel

better soon.

Peg

Oceandrmer@... wrote:

> Thank you Peg, & Tim for your responses to my above msg. I'm thinking

> very strongly of changing insurance companies during open season (it won't be

> effective until Jan. 2000) & going back to Mayo. Will see what happens on

> Mon, 10/11.

>

> If I could just combat the fatigue to where I can have a half-way " normal "

> life, I would be ecstatic (sp?).

>

> Laurie

>

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

>

> eGroups.com home: /group/

> - Simplifying group communications