Spouse of PSC'er

[Guest guest]

I just want to say that (once I got the hang of how

the support group works), I was so uplifted and

touched by the women who responded so honestly and

with such emotion to my posting about being a spouse

of someone living with PSC.

Some of the stories were so similar! Like you, Nina,

we also found out that Rob (my husband) had PSC

initially when we went for life insurance as well! He

had an elevated liver count. Then, after biopsies,

more tests, the gastroenterologist wrote a letter to

the insurance company saying there wasn't anything

wrong with his liver. Luckily, we did get life

insurance (not that I'm looking forward to any of

this). At that time, we just thought it was a high

count but nothing to worry about.

Then, after a stressful season (we run a seasonal

yacht chartering business in NYC), Rob had constant

diarrea for weeks, lost weight, and basically went on

medication to stop this. He was diagnosed with

Ulcertive Colitis. After this, the same doctor

thought that possibly he might have PSC, remembering

the elevated liver count. Lo and behold, the Cat

Scan, or MRI showed scarring of the bile ducts - and

here we are...

Also, like you, Nina, I can relate to the frustration

of wishing my tired husband was " more engaged " with

our son, River, who has tons of energy. I feel like

my image of Rob is constantly stretched out on the

sofa, eyes closed..

And Pamela, thank you so much for telling me I need to

not take his lack of energy personally. God, can I

use this as a mantra? Yes, I do get angry when it

seems like his energy gets used up during the day with

other people and by the time I get him, he's like a

squeezed out washcloth! I feel so young to be dealing

with all of this - and YES, I'd love to email you all

personaly because while it seems selfish of us to be

talking about our own frustration when it's our

spouses who have to move through this quicksand on a

daily basis, it affects us too in different ways. We

wouldn't be human if we didn't feel confused,

helpless, and the need to express our own feelings. I

personaly don't know of anyone in my " world " with this

same issue - thus, I turned to this computer!

I will say that after I saw that Organ Donation video,

I signed up for a card to be sent to me that I can

keep in my wallet. Thanks for that too!

One question for the whole group...does anyone know of

advancements in the field of stem cell research to

possibly grow a liver? When our son was born Jan.

12th, 2005, we stored his cord blood for the purpose

of one day possibly being abe to use it for my husband

if, God forbid, he needs it. Who knows?

Please visit http://www.cdbaby.com/lezlee

__________________________________________________

[Guest guest]

Dear Lezlee,I have been reading the post and I'm glad that you heard from those who have beenin your shoes. I am the mom of a 25 year old who was diagnosed while a junior in college.I can't believe it has already been over 3 years since he was diagnosed.Since you ask about the latest research, I just wanted to let you know about our PSC Partners Seeking a Cure foundation. It is a foundation that grew out of this group and there is a free newsletterthat you can look at to see the latest news. keeps up with the literature and has a website with over 50,000 abstracts on PSC. [ Dave , forgive me if I am not up to date on the number].You can sign up to receive notification of when the newsletter is put out.Here are the web sites:www.pscpartners.orgwww.psc-literature.orgHang in there, together in the fight , whatever it takes.LeeI just want to say that (once I got the hang of howthe support group works), I was so uplifted 

[Guest guest]

Lezlee -

I have been wanting to write in response to your post of being the spouse of a PSC'er. As Lee described being the mom of a PSC'er - I too am a mother. I think there are similarities in that as a spouse, caregiver, mother, you walk alongside your loved one, not in their shoes, but with them. As others have said, this brings along tons of emotions - often an emotional roller coaster. Many spouses are the key people who participate in this website (and often wonder why their spouse doesn't).

As a mom, I too have learned so much from this group, and have benefited from both reading the stories and questions of others. In addition, over time, I have seen individual's progress - unfortunately from being healthy to being sicker (and sometimes a very sad death). I have also seen progress - some folks stay very stable and are doing wonderful things with home, work, children, etc. Some of the older teens and young adults have graduated and are continuing to progress with school and work - exciting news to share among this "family". And for some of those sicker people, we also share in the trials and tribulations following liver transplant.

And one of the most wonderful things I have seen and learned and sometimes need reminding of - is that I am not alone. This group is so supportive and caring.

Joanne H

(, Ca., mom of 17, UC/PSC 2-06; JRA 1998 - just returned from college trip to Humboldt State University, a great trip!)

-----Original Message-----From: [mailto: ]On Behalf Of leedeubertSent: Sunday, October 28, 2007 1:39 PMTo: Subject: Re: Spouse of PSC'er

Dear Lezlee,

I have been reading the post and I'm glad that you heard from those who have been

in your shoes. I am the mom of a 25 year old who was diagnosed while a junior in college.

I can't believe it has already been over 3 years since he was diagnosed.

Since you ask about the latest research, I just wanted to let you know about our PSC Partners

Seeking a Cure foundation. It is a foundation that grew out of this group and there is a free newsletter

that you can look at to see the latest news. keeps up with the literature and has a website

with over 50,000 abstracts on PSC. [ Dave , forgive me if I am not up to date on the number].

You can sign up to receive notification of when the newsletter is put out.

Here are the web sites:

www.pscpartners.org

www.psc-literature.org

Hang in there, together in the fight , whatever it takes.

Lee

I just want to say that (once I got the hang of howthe support group works), I was so uplifted

[Guest guest]

Well said, Joanne.LeeLezlee - I have been wanting to write in response to your post of being the spouse of a PSC'er.  As Lee described being the mom of a PSC'er - I too am a mother.  I think there are similarities in that as a spouse, caregiver, mother, you walk alongside your loved one, not in their shoes, but with them.  As others have said, this brings along tons of emotions - often an emotional roller coaster.  Many spouses are the key people who participate in this website (and often wonder why their spouse doesn't).  As a mom, I too have learned so much from this group, and have benefited from both reading the stories and questions of others.  In addition, over time, I have seen individual's progress - unfortunately from being healthy to being sicker (and sometimes a very sad death).  I have also seen progress - some folks stay very stable and are doing wonderful things with home, work, children, etc.  Some of the older teens and young adults have graduated and are continuing to progress with school and work - exciting news to share among this "family".  And for some of those sicker people, we also share in the trials and tribulations following liver transplant. And one of the most wonderful things I have seen and learned and sometimes need reminding of - is that I am not alone.  This group is so supportive and caring.  . 

[Guest guest]

e,You make the case for doing all we can to raise funds for research now !Contact me at leedeubert@... if you want to know the many ways you can help.LeeHi Lezlee, I am fairley new to the group myself and love it. I have a son, age 3with PSC and Chrons, I just recently went to an Answers in Genesisconfrence and they did a whole seminar on Adult stem cell research. It was awesome, I was on the edge of my seat the whole time! Theytalked about the research that is being done now and they have formeda liver using ADULT stem cells such as a the cord from a new born! Also they used stem cells from an ADULT bone marrow....they say thatit could take 10 years to actually get all the quarks worked out butthey are making progress! How awesome would that be? Have thedoctors told you when to expect him to need a transplant? My sonsdoctors told us it could be 5, 10, 15 years, I am optimistic andhoping for the best. I hope this helps a little.