#^$&#@!%&*^$...and that wasn't pretty, what I just said.

[robin]

Went back to the doctor Monday and my idea of treatment got kicked in the dirt. I argued the point hard, to no avail. My LFT's are going up...which sucks as it has to mean my new liver is not a happy camper. The TP doc was OK with treating, my the hepatologist wasn't. He wants me to wait until I have at least bridging in my new liver...like HELL I'll wait.

The good news is that the change to cyclosporin has almost stopped my hand tremors. They were a hassle and I couldn't do things that required any fine motor coordination.

Anyway...it bummed me out that my LFT's are on the rise, they won't let me start treatment and want to do a biopsy on my 6 month old liver. But...I will get over it...for sure, it ain't the end.

Keep your spirits high...robin

[Pancho and Lefty]

Hi Robin,

I won't pretend to know anything much about rising enzymes and certainly nothing about TP. Just thought I'd fill in the blank by sending along my sincere best wishes. 

Keep Your spirits high, we can never see what's around the next corner. It may turn out to be a very special gift.

God Bless

[KatNyerHAT]

Oh, Robin, dear...     I am so bummed that you can't treat at this time... Your new liver has to do right by you and it's hard to believe that viral load has also gone from 6 million a couple of months ago to 26 million so quickly.  I've heard this is common.

On the other hand, that's great news about the cyclosporin!  So, physically, you're feeling better, right???

You're made of strong stock (gosh, I'm beginning to sound like you!...LOL) so I know you won't let this beat you. 
What a fighter and my personal heroine....

Love ya, 
Kat

[MissyMouse]

awwww shucks.  I know how much you wanted to start attacking the beast.  Love ya girl.

Mouse

[beingbecky]

Robin,

With all you have been through in getting this new liver, it makes no sence to have you wait like that.

Becky

[DougV]

Robin,

I'm sorry your hep doc doesn't want you starting tx yet.  On that subject could I ask you a few questions? 

When you did tx pre-transplant, what issues did you have, if any, with blood chemistry?  Especially how were platelet, red, and white counts during tx, and how long does it take to physically heal completely from your transplant?  I know in my own case I did not heal well during treatment.  Also did you respond and relapse or not respond at all?

Guess what I'm thinking is your hep doc probably is much better versed at the effects of Riba then are your TP docs.  Perhaps he is concerned that something else may be impacting your LFT's other then hep.  Or that tx might be an issue for your right now.  Or.........

I dunno Robin, I'd sure wanna know exactly why my hep doc wanted to wait.

Just a thought.

And excellent you are feeling better.

Doug

[Hank's mom]

Dearest Robin -

The problem with being a trail blazer is that it can also mean you have to break down the brick walls. I've gotten so used to trusting my team that I listen closely. I am also always afraid that if I fight some advice or decision on their part, that I would have been better off listening in the first place.

Maybe the logic will appear in some round-a-bout way before long. Still, be careful with the new unit. I'm glad the numbness in your hands has been successfully addressed.

Either way, you are in my heart and thoughts everyday. I remain your loyal fan,
Susie

[Betty W.]

Robin,"Keep your spirits high" does that sound familiar You know I can't begin to know what you have been through !!! So I will just continue to Pray for you. I do understand how very upset you can be. You have always been such an inspiration to me. With your "HIGH" spirits.......I ;ove you Robin, this too shall pass. We will BELIEVE !!!!!
Love and Lots Of Prayers  and a GREAT BIG HUG.....Betty

[robin]

Thank y'all for your good wishes...I was at that point where if I didn't just belly ache, I would blow up.
Doug...my LFT's had dropped to normal after the TP then they started creeping up each week. Not sure exactly why but I think it has to do with the virus setting up household in my new liver. A few weeks ago I went through a period of nausea and difficulty eating with right sided pain (in the liver area) so I kind of expected it was under attack.

I only made it through 3 months of treatment but I cleared early. My problem was I had severe bone marrow suppression, which they are concerned about. I didn't respond to procrit or neupogen so I was hospitalized 3 times with pancytopenia on reverse isolation. They did a bone marrow aspiration after the IV iron didn't help bring my reds up and it showed almost no cellular activity. He is concerned that I'll have problems since the meds I'm on already suppress your marrow. 

Things are all OK now...I just needed to complain to someone other than my hubby and close contacts as they must get tired of hearing me gripe about things that in the whole of life...are really pretty petty. Thinking that if they let me treat in 6 months, there won't be a big difference so it's not a big deal. RIGHT?

Keep your spirits high...robin

[hanklive39]

Hey Robin!!!

When I see that you haven't complained about something or someone is when I'll start to worry about your health!!!
So there's no CMV activity at all in your system? Hmmm, It seems like they're puzzled to say the least!!! Maybe your TP doc should consult with UPMC since maybe they did train him after all. It can't hurt!!!  Btw, they train just about half of all of the transplant doctors in the US... The others are trained through another fellowship program @ UCLA. out in the "left" coast!!! 

Respectfully,
Henry

[Hank's mom]

Hey Robin -

Glad to be hear for the letting off of steam - anytime - really - it's the least we can do since you've shouldered all of ours.

Well, if nothing else you have answers - such mysteries in our bodies - though who needs the it or miss kind of exploration.  I hope you fare better as of tomorrow.

I love you and am sending bunches of hugs and kisses your way. Here's to having your spirits fly on the high smooth currents from here on in,
Susie

[19Dragon52]

{{{{{Robin}}}}}

You know it's never a burden when one of us needs to bring something to the table (or throw something at the table)! 

Like Momma said...you are always there for one of us with that bit of extra care and kind words that there probably isn't anything we wouldn't do for you.

I have mentioned plenty of times about how naive I am with all that is involved with a T/P.  What I do see is that it is one tough & rough trudge that I commend you for enduring.  I hope I can always be at beck & call to hopefully have words to at least be able to soften one jagged edge on this path of many jagged edges
you travel.

I love you and care for you deeply.  You have given us plenty of reasons to be so very proud of you.  Blowing off steam and All!    Also, look at how much support you are now able to give others in this position like Suzi & Dan.  You, Hank and any others with T/P savy are a God Send.

Much Love & Support.....

[robin]

Thank you for your shoulders to whine on...it is frustrating because there is so much I need to know and don't. Then there are so many things that I try to figure out because I feel like a pain in the butt if I call my TP team. All of you guys and girls are my heros. I care about you all...keep your spirits high...robin

PS...the way I came up with the spirit thing was when I was working as a nurse and rather than just ask if a person was feeling down...I'd ask how their spirits were doing and then if they said OK...I'd tell them to remember to keep them high as it helped their physical body when their emotional and spiritual body was content. Just a tad of FYI...nothing important or mind-shattering.   

[Betty W.]

((((Robin))) everyone has so much to learn, I still don't know what SVR means....so Keep your spirits high

and FYI it is important and NOT mind shattering !!!!

I love it when you say "keep your spirits high"

Love you Bunches....Betty

[Hank's mom]

Back in the day I enjoyed a nice red wine with pasta dishes.  Now I enjoy a strong red whine with my oatmeal. 

Susie