Update

All my prayers and hopes for the best outcome to you and Nick.  
Una

You and Nick are in my prayers!    Keeping on fighting!

Peace
Rita

hugs and prayers to you (superchick) and Nick!

best wishes....darla

Elaine, You and Nick are strong on my mind and I am praying that his strength, and yours, will see him to his goal. I wanted to offer something to you that may be somewhat unconventional. I had just purchased quite a bit of medication for Jim that we will not be using. It has not been touched but the pharmacy cannot take it back for obvious reasons...perhaps the same reasons you may not wish to touch it. However, if you would benefit from this medication to help you out financially, I would gladly ship it to you (my gift) for Nick. I can send it in a container that may keep it cool in this heat during the shipping process though it doesn't need to be refrigerated. I noticed Nick takes Lactulose and I have 4 full bottles. I also have one bottle half full as I always transfered the syrup into smaller bottles for easier pouring. (I understand if you don't want that one since it has been opened)  Jim took it 5 times a day. The other medication that he used for hepatic encephalopathy was Xifaxan ( Rifaximin) which I didn't see on your list. It is actually an antibiotic that is effective in treating encephalopathy. Jim responded to it very well but it is very expensive so prohibitive for many. If you ask your doctor and he/she thinks it would be helpful for Nick and not detrimental, and you would like it; you may have the bottle (untouched) of 90   200 mg tabs. The Rx comes in an 100 tab bottle so the pharmacist opened the bottle (unfortunately!) to transfer it to a smaller bottle to fill our 90 tab prescription  so now we can't give or sell it back. I paid $350. copay for the little gems so I'd like someone to have them, my gift. If you can't, or don't wish to use them; I'll offer them to someone else on the forum. I'm a very hygienic person and very careful about contamination. The bottle was never opened. Best wishes to you and Nick, Elaine. I certainly appreciate your support and friendship during these difficult times for us. My heart goes with you during these touch times. I just know you and Nick will reach your goal. Stay positive. Love, Tricia

Tricia,
I would be ever so grateful for Jim's meds and I sincerely
thank you.  I would not be worried in the slightest about
contamination.  

Nick gets all his meds free under his insurance
we have extra here as well.  I would rather them be
sent to someone who does not have insurance and can't afford
to buy them.  

I thank you sincerely for thinking of Nick at this time, when
it is so difficult for you.  You are a very special person and I
thank you for your caring, thoughtful loving mannerism.

Please know my heart , hugs and prayers are with you
and your son.  

Hugs
Elaine


PS thank you Darla, Una and Rita for your prayers and support

Million hugs and prayers to you and Nick!

Stay positive, Angel-Mom!  Nick is young and strong... and he has the strongest and the most loving Mother in the Universe!

Love and hugs

Miss Tallahassee !!!

Thank you !!! you're correct Nick is young , but not so strong right now:(
With a new liver comes a new life for him.

Hugs and Love
Elaine

Child24angel,

I don't know that there's anything that I can say that will ease your difficulties except that you're in my thoughts and prayers!  Hugs, Susan400

Thank you Susan !
One sentence says it all and how you feel. I thank you
I also want to wish you well and much success with your tx
Hugs to you
Elaine

Hi Elaine -

I'm contantly watching your updates. My most sincere best wishes to you and Nick!

Elaine,

It CAN be done. I think Nick will start improvement immediately after the TP, as is often the case.  I have been told by my surgeon that the bleeding during surger can be controlled (has to be, whether hemophilia or not, because all livers would tend to bleed uncontrollably without it), so it is not such a big problem.

I'll be checking every day to see what you post hear and will be praying for Nick. He is so lucky to have you for a mom!  :)

Brent

Goof and Brent
Thank you both very sincerely.

Nick's MELD went to a 24 within 2 1/2 weeks..keeps climbing
and so his health keeps declining.
He is on high doses of everything including diuretics with
an antibiotic.  
He has constant bloody noses etc.  I'm sure you already know all of this.

His TP team, is fully aware of what is going on.  The higher the MELD
the better....an A liver say, versus a  b or c.

I think it is about time for a TP  though, this has gone on long enough
(Just the mother in me) :)

Thank you all so very much for hanging in here with me.
I love you guys !!
Hugs
Elaine

Elaine,

I wish i had any insight to help you.  But you and Nick have my prayers!


Hugs to you and Nick!

peace
rita

Elaine,

As alway, I think about the two of you.

Take  care,
Eric

God Bless...

Elaine, always keeping you and Nick in my thoughts.  I'll keep an eye on the updates.  Just hanging in there with you until the call comes ... things will get better for Nick, Elaine.  Please....take care of yourself.  Quiet moments to tend to your soul, Elaine.  Keep the faith, darlin.

Love and prayers,

Trish

Elaine, I've also been watching and waiting for some good news for you and Nick.  Something will come soon.  The phone will ring and that will be it.  I have a good friend who transplanted on thanksgiving day.  You both are in my thoughts and prayers.

Hang in there kiddo,

Willy

I can't seem to say it but - I feel it.
Mike

Wishing and hoping and thinking praying......WHTP!:)
FHL,
Bug
www.youtube.com/watch?v=dJ-MVAzdUK4

Back to my busy, busy world I hadn't checked in here as much this week, thanks to a friend I was made aware of Nick's condition.
  Like Mike said , it is so hard to say, put into words to even explain how much hope and thoughts and concern we feel for Nick and you....but you know. From day 1 'meeting' you, hearing of Nick I have always thought of my sons, how hard it would be. My sons are well aware of you and nick too, I send them text at times (say a prayer text:)
  We will all be praying for him, and your never ending exceptional strength and 'mothering'.
I feel he'll get through all this Elaine, I really do.

Love and prayers, Lauri

Trish... that was quite thoughtful and yes, someone that can't or isn't able to get these med's will hopefully find their way to you. Read your profile and you and your husband will be added to our prayers.

Trish (sorry Elaine, to 'post' here)...I'm PM-ing you, I'm so sorry, I just saw your journals, read past your profile.

Hello...I don't know a lot about liver transplants, but I have seen people who have had them, and look like a miracle happened...His body is under such a horrible strain from trying to eak out function from his worn out liver, that once he gets the new one in, it will be like air to a drowning person...((((((((((((((((((((((((HUGZ)))))))))))))))) I'll pray for strength for the both of you in the days to come...                                                            ~Melinda

You remain in my thoughts and prayers. I can't even imagine how awful the waiting must be.  I pray for your continuing strength and Nicks new Liver, POST HASTE!!!!!Much LOve, Bevy

Rita, thank you !!! sending prayers and hugs right back to you my friend
Eric: Many thanks to you as always, Your journey has been quite a ride ! you did it !!
FLGator !! thank you !!!
Trish, I wish I could write like you !! I'm glad your here waiting with me, thank you Trish for loving and caring.
Willy: I know you have been watching and I thank you !! waiting for the phone to ring also !!
Thank you Willy, you mean a lot to me. !!
Mike: I feel it too !! thank you my friend for everything !!
Bug: LOL WHTP? LOL I loved the video !! LOL  LOL LOL Love you !!
LL:  I know you have sons and how much you love them, Thank so much for standing with me
in this, the most difficult time in my life.  Thank you
MedicMom:  Thank you !! a miracle here is what we need....thank you for everything
Wassup:  Having your share of problems a little bit ago , now comforting me...Thank you !!!

Love you all
Many cozy hugs all all around (with rootbeer) !
Elaine

Elaine.....you write honest and heartfelt and your inner beauty comes through in everything you write.  Don't write like me, Elaine... just keep being you.  Nick is lucky to have a momma like you.

Looking forward to that rootbeer.....will be the BEST rootbeer ever. :)

Trish

Trish, thank you  
OK Trish you get a rootbeer float !!!
When this is all over, I'll ship it to you !! LOL
Or...even better when you're done with tx !!
Hugs
Elaine

Elaine,

I'm still praying for you both and cheering Nick on.  I raise my rootbeer in a toast to his long life.

xoxox
jd

Elaine as do I!  loads of toasts, rootbeer and  a fruitfusion.



Praying and wishing you a hurried  call.

hugs and love ya!

Deb

Elaine

Your in my thoughts constantly. Thinking of both you and Nick.



As Always,

Charm

JD , Deb, Charm

Thank you  superchicks !!!  Thank you so much for waiting this out with me.
You guy are great friends !!

We will need lots of rootbeer :) !!!
or for  Deb fruitfusion !!!
Hugs
Elaine

Hi! Just wanted to let you know, I am still here praying for you both.
Grandson leaves tomorrow, I sure will miss his company.

But I am exhausted. lol!  it has been great though!

Wanted to let you know your in my thoughts,

manyhugs and mucho love1

Deb

I do love that fruit fusionlol

Thank you Deb....I keep forgetting to update my journal.
I'm sorry your grandson is leaving tomorrow:(((((( you need a little rest though !!!

Nick has been a little sicker than usual this last week when
his TP team raised his diuretics...they had to lower lower them yesterday.
So we will shall see how he feels within a few days.
He kept complaining his kidneys hurt...and had problems
in the bathroom if you know what  I mean.

All bloodwork came out to show no problems with the kidneys.
His system could not handle all the diuretics they had him taking.

In addition, Nick will be called every 2 hours from here on out to make
sure he is ok... and....his TP nurse said on the fourth of July weekend coming
up they get more livers in..I don't know whether to be happy or sad !

Here , I will lift my Mocha to you !! and you have your fruit fusion !!
Or rootbeer:)
Many hugs
Elaine

Elaine I don't know how they control the bleeding but somehow they do.  Sometimes if they would explain more to folks instead of less it could give a lot of peace of mind but they aren't really in the peace of mind business I guess.  Always keep you two in my prayers and keep us in the loop.