Re: Husband Newly Diagnosed with PSC - response

[Guest guest]

The post from Barb in Texas explains many of the symptoms of PSC. Fatigue and bruising certainly show up, and the bleeding in the whites of the eyes can be connected to this. The red around my eyes was pretty much where my eyelashes are. The liver docs send me to dermatology and they were stumped and took pictures to study.

Fatigue is certainly related to the disease, and the idea of being an active mason with this staggers me, but then I have been on the disability list four years. The consensus of whether to work seems to be do it if you can. Don't let the disease make you give up anything you love. However, one also has to face facts, the body can only do so much, and it takes energy to fight infections etc. There are many folks here that keep working. It is a personal call. I know there is a mechanic who is back to work after a tx and many others keep their jobs. Often insurance situations will dictate the decision to work or not.

Has your husband experienced the "ITCH". It is one of the most common problems for anyone with liver disease. A healthy person can not understand what the ITCH is like. It is not even similar to a rash or bug bite or any other skin problem It seems to start on the inside, below the skin and doesn't really respond to scratching, but that is all we can do . There are pills that help many. I found great relief with UV/B light treatment. It took about 4 weeks to get full relief, but it was wonderful. Perhaps just exposure to the sun would help prevent the ITCH but talk to a dr.

As you learn more, you will see that there are other problems PSC'rs have in common. Ulcerative Colitus is a major one. About 70% of people with PSC have UC. There is also medication to deal with it, but it is important to talk to the docs again.

Life doesn't stop, sometimes we have to adjust, but we live good lives.

Take Car

MizKit

[Guest guest]

He has not started the " itch " yet which we are thankful of. He has had

no flare-up from the UC for about 15 years. Other than fatique, he is

feeling ok. As far as work goes, we will have to wait and see. I just

added him to my insurance which is some relief. I also think getting

back to a " normal life " will help. He has thought about going back to

school (nursing). After being in and out of the hospital the last

couple of months, he really thought he may enjoy that line of work. We

will see. This group is great and I really approciate eveyone's help.

cmp12305@... wrote:

>

>

> The post from Barb in Texas explains many of the symptoms of PSC.

> Fatigue and bruising certainly show up, and the bleeding in the whites

> of the eyes can be connected to this. The red around my eyes was

> pretty much where my eyelashes are. The liver docs send me to

> dermatology and they were stumped and took pictures to study.

>

> Fatigue is certainly related to the disease, and the idea of being an

> active mason with this staggers me, but then I have been on the

> disability list four years. The consensus of whether to work seems to

> be do it if you can. Don't let the disease make you give up anything

> you love. However, one also has to face facts, the body can only do

> so much, and it takes energy to fight infections etc. There are many

> folks here that keep working. It is a personal call. I know there is

> a mechanic who is back to work after a tx and many others keep their

> jobs. Often insurance situations will dictate the decision to work or

> not.

>

> Has your husband experienced the " ITCH " . It is one of the most common

> problems for anyone with liver disease. A healthy person can not

> understand what the ITCH is like. It is not even similar to a rash or

> bug bite or any other skin problem It seems to start on the inside,

> below the skin and doesn't really respond to scratching, but that is

> all we can do . There are pills that help many. I found great relief

> with UV/B light treatment. It took about 4 weeks to get full relief,

> but it was wonderful. Perhaps just exposure to the sun would help

> prevent the ITCH but talk to a dr.

>

> As you learn more, you will see that there are other problems PSC'rs

> have in common. Ulcerative Colitus is a major one. About 70% of

> people with PSC have UC. There is also medication to deal with it,

> but it is important to talk to the docs again.

>

> Life doesn't stop, sometimes we have to adjust, but we live good lives.

> Take Car

> MizKit

>

>

>

>

>