Re: Liz...Liver Biopsy Results today for

[Guest guest]

It is

a real nightmare.

.. I

have to get myself in shape physically and mentally in case he needs a

piece of my liver.

Liz: The good thing about nightmares is they do pass with

the light of day and you get to choose where that " light "

comes from: God, support people, knowledge, the sun, faith, hope,

love, reading, walking, crying,riding a bike, holding hands, feeling

satin, baking cookies, and on and on. How simplifying of me when

I am whinning many times here with the heart break of our terrifying

diagnosis time after time, but.....You will take it a day at a time

and you will triumph and become the stalwart oak tree, I know it.

The post traumatic stress lingers on and will rear its ugly head once

in a while but like the mighty oak tree your sap will run, your leaves

will sprout again and your little acorn will grow into a great man.

Whip yourself into shape physically, do you like to run, walk, swim or

other aerobic exercise, or even Yoga (mind and body) and then you can

take on the roles you are going to have to play. That sounds

like a plan to me so you can be a living donor when and if it's

necessary. You sound like a wonderful mother and wife and I know you

have it in you. Keep us posted. My fondest regards to you

and I send you on the wings of angels faith.

Dee in Peoria, wife of Bob 59, uc, ileo, psc

--

[Guest guest]

Hi Liz....

I am sorry that I am just getting to reading and replying to emails from last week....Fri we were gone all day with Tylers Remicade and with some other family things going on I have not had the time to get on here...so I will read a couple that I have seen from you and please write me....with anymore info that I may not have seen....

I am guessing that Tom had no problems with the biopsy....so that is good news....

so the results are that there is some portal hypertension....and possibly some varcies...they will most likely want to do an endoscopy to tell exactly what is going on there....what about cirrosis...any word on that....

any talk about an ERCP...that is usually what they do after a biopsy to confirm the findings....

As I am gathering that Tom still is feeling well and as I would expect doesn't really want to even talk about all that is going on....that is a male teen for you...Ty is pretty much the same way...just wants to ignore the whole thing ...until he gets sick...then its MOM......

It is hard as a mom who understands what is going on with them to sit back and let them be the person they are...Teen yrs are hard enough with out also having to deal with being ill....and being a parent of a teen is enough with out worrying about every step they take...parties they go to...people they are with...yikes the list goes on and on....but we as moms could drive ourselves absolutely crazy if we constantly thought of nothing else....OHHHHHH believe me it is very difficult not to want to put the big old plastic bubble around them...but that would make them very angry...and we have to keep the lines of communication open with them....they have to feel free to come to us with their problems...what ever they are....

I know where all my grey hairs came from...and Tyler knows too...kids me about them all the time...hes not dumb...he knows I spend alot of time on the computer learning what I can.....he knows I worry....and he knows I try my best to not hover over him.....but I know I do...more than with the other 2...and luckily Ty tells me that he does understand....

ohhhhh this is not easy...so Liz ...write me when you want...I will certainly get back to you when I can...

take care and talk soon

Luanne Ty's mom

[Guest guest]

Luanne,

Sorry about your mom, hope all is well with her. Yes there is cirrhosis. The hepatologist did discuss possibility of ercp. He is starting on urso, cannot swallow the capsules, so they are mixing liquid for him.

As you can imagine my husband and I are half dead. Even though I expected this, it was hard to actually have it confirmed. I am crying alot, as is my husband, who is not a real emotional guy. He is praying that God takes him from this disease and spares his son. It is a real nightmare.

Anyway, Tom is handling this well. He says he is more worried about me than he is about himself. He says at least we now know what we are dealing with and he will do whatever he can in order to stay as well as he is now. It breaks my heart to think what may be in the future for him, over which we won't have any control. I have to get myself in shape physically and mentally in case he needs a piece of my liver.

Anyway, keep us in your prayers please, as I will do for you and Ty.

Liz

[Guest guest]

Anyway, Tom is handling this well. He says he is more worried about me than he is about himself. He says at least we now know what we are dealing with and he will do whatever he can in order to stay as well as he is now. It breaks my heart to think what may be in the future for him, over which we won't have any control. I have to get myself in shape physically and mentally in case he needs a piece of my liver.

Hi Liz,

Sorry you're having to go through all this its bad enough seeing a spouse of other family member be sick when its a your child I'm sure it must be a hundred times worse. I haven't any kids of my own but I hate to see any of my family get sick with anything. Really tears at the heart strings.

Hope your son does OK as far as possible, at least in a way now you know what he has got and know about PSC it can keep you ahead of any problems and be able to deal with them speedily.

Much love and God bless,

Barbara (UK)

[Guest guest]

Dee,

Thank you for your kind words of encouragement. They come at a much needed time, as I am having a difficult time today. I hope and pray that the strength you mention in your post does come to me, as I am feeling so down today. We spent the day yesterday at ' school, which was hosting an open house for incoming students. I kept looking at him and all of the other boys, and I couldn't help wondering why him and why now, when he is so young and happy and full of possibilities. I know there are no answers to these questions, and I pray for courage, acceptance and the faith to go forward knowing that God is with me and I am not walking alone through all of this. It is with the help and kindess of wonderful people like you, who care enough to send your thoughts my way, that I will make it through this one day at a time.

Have a blessed day.

Liz

[Guest guest]

Barb,

Thanks for your thoughts, I really need all the encouragment I can get today.

Have a wonderful day,

Liz

[Guest guest]

Hey Liz...

Thanks for the thoughts about my mom...she is stable and out of CCU and had an ECHO today...so waiting for results to know what will happen next.....

This whole thing with our guys is such a shock....so unreal...how could this happen....but I have learned that it is what it is....and not to waste too much energy on wondering "why"....

Hopefully no one will be taken from this disease...there are so many members here that have lived good lives with this for many yrs....so you have to think positive....Of course that doesn't mean I don't worry about Ty....but know that I will be of no good to him if I am an emotional wreck....so we deal with this all one day at a time.....today is a good day...he is at classes...all good...

Being in good shape physically for Tom is important...but so is being there emotionally ....more of what he will need from you is to hold it all together...to be able to be the one who can fight this fight for him when he may not be able to....a caregiver is an important role....

Keep your chin up Liz.....our boys are still the lucky ones here...they have loving families to care for them....there are so many who never had and don't even know what that is like....

school and friends should be his focus now....the normal stuff....to keep them as normal as possible.....that is what they want more than anything....

well ...lots to do today...

better get going..

take care and talk soon

Luanne Ty's mom

[Guest guest]

Luanne,

Thank you for your encouragement and wise words of experience. I am trying my best to hold it all together emotionally. Yesterday I was ok...today I am a mess. I never let him see my tears. He is feeling fine, took the PSAT today (in his school they begin taking it as freshmen) and went out on the town in Manhattan with his school friends for lunch. He called from Times Square -- enough to turn my hair grey w/o liver disease in the picture!! He is a great kid, very brave, tough and resilient.

Is Ty taking urso? If so what dose, and does he have any problem with side effects.

Thanks for holding me up. I really need it. Your encouragement means more than you know. I have followed your journey with Ty via the posts over the last few years and know all you have endured. Thanks for making me feel that I can do it too.

Liz