PSC Ignorance and Lack of Support

[Guest guest]

Dear friends with PSC! Have you experienced a problem with people

almost treating you like, when you explain what PSC is they act like

you said nothing or think it is no big deal like a cold or

something? I know majority of us including myself, don't want people

to over worry for us or even worry most of all, but a bit of

understanding of a bit of compassion shown by them might be right

thing to do?

Has anyone also had any potential trouble, as far as family goes,

just assuming PSC is no big deal and you don't need help, support or

understanding most of all? It's been a bit hard since I've had it,

even the complex ERCP's and operations like a lot of us have

experienced with our bile ducts! Just love to know what some of you

think about this, or even if you have any advice in what to say to

people when they do ask about what you have, the extensive ERCP's as

well as the sometimes extreme symptoms a lot of us have experienced

that are the complete opposite of fun? For any of you that have

tried to reply to me previously, I apolagize for not having been on

the site lately enough; I've just been sick quite a bit lately with

the typical jaundice, itching, pain, infection, nausea and throwing

up at times and whatever else I'm leaving out that many of us have

experienced!

Also, since having the PSC have some really experienced any mood

problems, depression, low testosterone or any other problems? Look

forward to some responses here! Thanks to anyone who takes the time

out to read my post, especially respond (thanks) and I can definitely

relate to all with PSC and hope everyone is doing well and does well

in the near future...

Much Peace,

Rich

[Guest guest]

Rich,

Even though it doesn't excuse people for lack of compasion, like most

anything else, I don't think anyone can fully understand what people

with PSC deal with and feel like unless they are in the same

situtaion. I know that and I have even been frustrated with

nursing staff at times and joked that we needed a brochure just to

explain all that is wrong with him since PSC and J pouches are not

something that the nursing staff at his regular hospital came into

contact with much. Actually, I think he was the first for both PSC

and J pouch that most of the nurses had met.

It is a good thing we have this support group so that we can talk to

people that do know what we are going through.

I'm sorry to hear that you have had a rough time of it lately, and I

hope you begin to feel better soon.

wife of

PSC, UC 2000

J Pouch 2004

tx November 18, 2006

[Guest guest]

Rich,

Noah is not nearly as ill as it sounds you

have been, but yes I agree that this and the other liver forum for kiddos with

general liver diseases (mostly BA) are the only places that I can get support

for myself. I am sorry to hear that you are not getting much

support.

Noah’s best bud (or rather the mom)

just recently finally GOT IT. This last trip they fixed a care basket for

him. I was shocked. She acted like all this was no big deal up

until the last one where he had his EGD and colonoscopy. I just decided

to quit telling her much. I was feeling very much like she did not

care. Even though the boys are together daily.

I don’t have advice for how to get

family to step up. Unfortunately, family can stink. But it does not

always stay that way. My family has gone through phases. Right now

they DO seem to get that Noah is not well. Unfortunately, Noah is so

tired…that there is not much TO do. I am sure you know what I am

talking about.

Much peace and many blessings,

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

Dear Rich,

You are certainly not alone in your feelings of frustration regarding support from others. There are many here who have gone through this but I'll let them tell their stories. As for me...I've had PSC for 23 years and my family has never gotten a handle on it, with the exception of my mother (who passed away in 2004). I was listed for tx 06/05 -- nothing. This past Sunday I decided if the encephalopathy gets any worse I will need to hang up my car keys. My daughter (age 23) told me not to be too upset, that when the time comes people will step up to the plate and help. I began to sob, and said I need help now and people aren't knocking my door down. In fact, no one has even called to see if I need anything or to check on me; not family or friends that are in a position to physically help anyway. There are several group members that I have gotten close to and they call me on a regular basis to check on me, and they are what keeps me from getting too depressed to get off of the couch!!! I love you guys and you know who you are!

My buddies in the group and I have discussed this several times -- the "why" of it all and we have a lot of theories. I'm sure some of our friends and family go into denial since the thought of our suffering or death is more than they can bear. Others, too self absorbed to give a crap (I have a close family member that fits this bill), and yet others just don't know what to say or do. Don't get me wrong any type of understanding of the person's situation won't relieve all the pain that comes with a lack of support, but hopefully it will make it more bearable!

When people ask about my condition I give tell them as much as I think they can comprehend -- not too much jargon, etc. In the past I would tell them that I was given 3-5 years to live, at time of diagnosis, but thankfully the doctors were wrong. People know that I'm listed for tx so in my situation it seems self explanatory that I won't live forever without a new liver. However, there are many who still don't seem to get that, as strange as it sounds.

The depression, well, yes, I think most of us have dealt with it on some level during the course of our illness. I have found, as have MANY others that talking to a counselor or a psychologist is worth every penny since there are few people to talk to and even fewer who have any understanding of the psychological aspects of dealing with a chronic/fatal disease. Anti depressants may come in handy temporarily or long term. I know that the encephalopathy has made my emotions take on a roller coaster like quality! Impulse control (quicker to anger and quicker to say so) is not as good and sleep eludes me when it can (which doesn't make the blues better). I hate the way all of this feels, but I'm coming to terms with the fact that it really is out of my control. So, I have to control the things I can. I talk to a counselor every 2-3 weeks, try my best to avoid known stressors, and currently I am taking 50 mg. of Zoloft, which I started 2 mo. ago.

Hang in there fellow PSCer and come to this group any (and all) time you need an understanding hand. My buddies and I take good care of one another on and off of this website. I'm sure you will be blessed too, just reach out. If there's someone you want to get to be better friends with you can email them privately -- that's how my greatest friendships here were built. All of us, at one time or another, took the time to write privately and wonderful friendships developed as a result.

Good luck to you and I'm sending a hug your way!

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

I think the thing that finally convinced my boss and some of my friends

that I really was sick was when I had a variceal bleed and had to stay

in the hospital for a few days. They had known I was sick before that,

my boss even had a note from my GI doc emphasizing that this was a

serious condition, but until that hospital stay they didn't seem to

think it was a big deal.

I don't recommend a bleed as a way to get people to understand.... for

some people denial is more comfortable and until something is undeniable

they'll ignore it if they can!

Johanthan

[Guest guest]

Hi Rich I had the same problem with my mum she didn't seem to

understand my systoms so what I did was take her to one of my

appointments to see Dr Chapman and she tryed telling him that it

couldn't be that bad and he told her all about it and said she needed

to take it more seriousily. Since then she has been much better so try

taking some of your family with you and let them ask your doctor things

then they will know more about it. Your answer to the depression I

don't know if its psc but I have been more depressed lately and seem to

have more psc systoms at the mo.

[Guest guest]

-Thinking that PSC can't be all that bad, I get a liver transplant and then I will be okay- is exactly how I wanted my children to react to my illness. It was difficult enough for them to watch me lose my memory, and need to rest, and lose my desire to participate in things, but knowing that I would get a liver transplant and that it would "fix" things was how we all got through it.

I have never wanted anyone to make concessions for me- I decided how and when to participate and didn't feel the need to make people understand how sick I was. Most of my friends knew I was sick, but it wasn't necessary for them to treat me with any "special" understanding.

Another point of view.

Take Care

MixKit

[Guest guest]

Hi Rich;

For those who don't understand PSC and all of its complications, I've

taken to asking them to please read this article:

LaRusso NF, Shneider BL, Black D, Gores GJ, SP, Doo E,

Hoofnagle JH 2006 Primary sclerosing cholangitis: summary of a

workshop. Hepatology 44: 746-764

which is now publically available from the NIH/NIDDK web site:

http://www.niddk.nih.gov/fund/other/PSCSept2006.pdf

If they don't get it after reading this, then I don't think they will

ever appreciate the problems facing PSCers and the urgent need for

more research on causes and cures.

Much peace to you too!

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

> Dear friends with PSC! Have you experienced a problem with people

almost treating you like, when you explain what PSC is they act

like you said nothing or think it is no big deal like a cold or

something?

[Guest guest]

I'm trying to do a balancing act of your point of view and also having

people understand somewhat what this disease is all about.

-Marie

>-Thinking that PSC can't be all that bad, I get a liver transplant and

>then

>I will be okay- is exactly how I wanted my children to react to my

>illness.

> It was difficult enough for them to watch me lose my memory, and need to

>rest, and lose my desire to participate in things, but knowing that I

>would

>get a liver transplant and that it would " fix " things was how we all got

>through it.

>

>I have never wanted anyone to make concessions for me- I decided how and

>when to participate and didn't feel the need to make people understand how

>sick

>I was. Most of my friends knew I was sick, but it wasn't necessary for

>them

>to treat me with any " special " understanding.

>

>Another point of view.

>

>Take Care

>MixKit

>

_________________________________________________________________

Fixing up the home? Live Search can help

http://imagine-windowslive.com/search/kits/default.aspx?kit=improve & locale=en-US\

& source=hmemailtaglinenov06 & FORM=WLMTAG

[Guest guest]

,

Thanks for that article. It was especially interesting since it included

quite a bit about autoimmune hepatitis, which I was just diagnosed with.

>

>Reply-To:

>To:

>Subject: Re: PSC Ignorance and Lack of Support

>Date: Thu, 21 Dec 2006 17:21:36 -0000

>

>Hi Rich;

>

>For those who don't understand PSC and all of its complications, I've

>taken to asking them to please read this article:

>

>LaRusso NF, Shneider BL, Black D, Gores GJ, SP, Doo E,

>Hoofnagle JH 2006 Primary sclerosing cholangitis: summary of a

>workshop. Hepatology 44: 746-764

>

>which is now publically available from the NIH/NIDDK web site:

>

>http://www.niddk.nih.gov/fund/other/PSCSept2006.pdf

>

>If they don't get it after reading this, then I don't think they will

>ever appreciate the problems facing PSCers and the urgent need for

>more research on causes and cures.

>

>Much peace to you too!

>

>Best regards,

>

>Dave

>(father of (21); PSC 07/03; UC 08/03)

>

>

> > Dear friends with PSC! Have you experienced a problem with people

> almost treating you like, when you explain what PSC is they act

>like you said nothing or think it is no big deal like a cold or

> something?

>

_________________________________________________________________

The MSN Entertainment Guide to Golden Globes is here. Get all the scoop.

http://tv.msn.com/tv/globes2007/