Appears I will get to treat

[robin]

Had my one year appointment today and it appears that I'm being referred to the hepatologist for treatment because my liver is somewhat pissed off. My LFT's are all somewhat elevated, along with my renal function and Protime...not extremely but enough that it is considered significant grouped together. So after all these months of my asking for treatment and being denied, I GET what they said I had to wait for my labs to indicate damage. I'll post but like I said, nothing is impressive as I see it.

Electrolytes all WNL
WBC 2.6 (won't that be interesting when I start interferon?) (4.5-11.0)
Platelets 139...good enough  (150--450)
Bilirubin  1.3  (0.6-1.0)
AST  122  (0-40)
ALT  123   (0-45)
GGT  134   (3-60)
Alk Phos  148  (35-115)
Protime  13.8 seconds  (control was 12.0)
Creatinine  1.3  (0.6-1.0)

So...you can see that nothing on it's own is impressive but together with a new liver...they should be in the normal range. But, I'll be seeing the hep"per"tologist and hopefully be on my own course of treatment in the next month or so. He was there today but I don't think he wanted to talk to me because I had finished a round of complaining to the pharmacist and I'm sure the hepatologist was warned I was bitchy today. Oh well...what can I say but keep your spirits high...robin

[MissyMouse]

Robin,

This is AWESOME news.  I know how badly you wanted to geto n treatment to protect that new liver.    I'm THRILLED for you!

Mouse

[Ella]

Hope you get to kick this virus now Robin.  With your courage, determination and high spirit, you're bound to succeed.  Wishing you luck and health.

[Squeaker1]

I am sooooo excited for you, Robin.  I just know that you are going to come out a huge winner with the tx, this time around.

Love and Hugs to you, Squeaker

[Betty W.]

Robin.what wonderful news !! You have been waiting a long time  for this to happen. The time has arrived and your 'buds', will be here cheering you on...Congratulations, Betty

[robin]

I just hope they get the referral in before too long. I'm still really irritated that they waited until my new liver is unhappy before they even decided I needed to see a doctor for my liver. The transplant surgeon said "I don't treat liver disease" and I'm like WTF? He did decrease my anti-rejections in hope that my kidneys will get a bit happier and my white count may come up.

To be honest, I don't feel good about this now. They don't want to use neupogen so I have pictures of them starting me on treatment and then stopping because my whites are too low. Seriously concerned I need a different doctor at this time.

Thanks for the well wishes and I do want to treat...keep your spirits high...robin

[DougV]

Robin,

Just a thought, but are there research hospitals that do transplants and GI work?  For example at UF some of the same doctors that treat hep also do transplant work as did the doc I went and saw up there.  To me that is what it sounds like you need, a doc who does tp's and treats heppers so he/she would be more familar with the issues you will face.

Doug

[MissyMouse]

Good thought Doug.  The doctor that Willy and I saw at UF was the head of the transplant unit and chief of hepatobiliary diseases.

Mouse

[beingbecky]

Robin,

Good insight on that. Why treat just to get pulled off. That would be like someone kicking sand in your eyes. The treatment is bad enough, you would not want to start the journey without some kind of rescue med option, or something. 

Prayers are with you!

Becky 

[hanklive39]

A word of caution if I may..

Remember that once you're transplanted the whole game plan regarding treatment changes one hundred and eighty nine degrees!!!

Anyone here that seriously thinks all Robin has to do is to finally go back on treatment, and Voila!!! She's cured!!! Nothing could be further from the truth as I'm an exemplary example of the latter  So folks, don't get your hopes up to high only to see your expectations become unfulfilled!!!

Let me repeat myself on this one... No one in the transplant business treats post transplant patients befor the patient has made it to one year except on very rare occasions where the treatment is absolutely necessary in order to prevent the possibility of re-transplantation, and this doesn't work that well most of the time.

Robin!
Remember not to forget to breathe!!!! Things will happen when they do - NOT when you want them to!!! Once you adapt and accept this premise, I guarantee you that thnigs will get better!!!!

However, if you feel the need to see a different doctor, by all means please do so!!! But remember this... You'll most likely get the remark that "things are being handled appropriately with your current physician so, I don't see the need for you to change your doctor since I'll be treating you in the same manner ass you current physician does at the present time."

Yuor number are really pretty darn good for someone just about ready to celebrate their first anniversary of a liver transplant so, I believe you'll only have better numbers this time next year!!! Now is the time to really, really prepare yourself for the kind of patience, and acceptance that was once only practiced by persons with ambitions of eventually leaving such a legacy to be considered for canonization!

Seriously though Robin! You're doing better than I was when I made my first year!!! You've got enough things going on under your skin so to speak so, please don't let this extra worrying, and stressing out over treatment get under your skin also - Capeche???

God bless you dear friend!!! If I don't get to say hey to you on your anniversary, I'll say it now: " So you made one year; What are you going to do when you make five???"

Take care Robin, and the crew!!!!!

Respectfully,
Henry

[michaelabshire]

I agree with hank. Let the doctor be the doctor and you be the patient. I know i am in no hurry to be treated for my hep c. My hep c doctor told me that right now would do more harm than good. My levels are no where yours are at. My one year is coming up on nov. 30 of this year. Hang in there. I am not a church person but i believe in the power of prayer.

[robin]

Thanks for the response and I will LEARN patience if it KILLS me. To be honest, I kind of feel like I just got a second opinion so far as seeing a different doctor with your response, Hank.
I'm still a bit in the air about how are they going to put me on treatment when my white count remains low? They have said they don't use neupogen so it has my mind in a quandry. To be honest, I'm thinking they aren't seriously thinking about treatment in the usual form...I'm thinking my dose will not be the standard because they said that it wouldn't be a 48 week thing. So, maybe they will use a lower dose for a longer period.
Michael, they told me that they would not treat the hepatits until my LFT's began to rise enough that it was obvious that the new liver was being damaged. It was just recently that all the enzymes were elevated, including the bilirubin.
Thanks, guys, for straightening out this fickle, impatient mind of mine...keep your spirits high...robin

[hanklive39]

Hi Robin!

As far as the treatment regimen is concerned, the standard course is to treat with a low dosage for an extended period of time but then again, that depends on all of the relevant factors pertaining to each individual.

Usually, and I emphasize USUALLY, the treatment last around 72 weeks with ocnstant monitoring of your blood product levels to make sure they don't miss any "windows" they may have in order to either make adjustments, or to temporarily suspend treatment at least until the complication, or complications stabilizes. Once that's achieved, they usually put you back on treatment ASAP!

Look dear, I completely understand what you're going through, and I don't ever want you to think when I comment about being patient, that it means you're not being patient enough!!! You are being patient, and then some because as you now know, a transplant patient tends to go through various NEW levels of patience as their post transplant life experiences permit them to gain more and more patience every year... We also grow every time we successfully navigate through each crisis we face which at times can happen on a daily basis so, I just wanted to clarify this with you as far as being patient is concerned. 

Honestly, you're handling all this new stuff being thrown at you much better than I did during my first year!!! In fact, you probably would've thought that I really needed to be put in a "Rubber room" so to speak so I would not only be incapable of harming the folks around me, but also harming myself!!! Oh yeah Robin, I was a mess back then, and I didn't have any means during those days to channel my anger & frustrations as we both can now via the internet.

Even today, when I sound like I'm beginning to become agitated about something, and my sister can hear it in my voice, she'll not hesitate for one moment to remind me not to forget to breathe for a minute or two in order to cope with whatever it is that is bugging me at the time. We talk to each other at least once on a daily basis... So believe me you dear! You're handling things much better than I did when I was around one year post transplant!!! - CAPECHE?

Don't ever change your sense of questioning things because, your own survival instincts are working in your best interests right now as we communicate to one another, and those instincts are so finely tuned right now that they may at some instances be working too well, and we just need to step away from the center so to speak, and look at the situation from a different perspective just in case we may overlook something or have someone we can trust do the same for us so as to avoid being too subjective in seeking possible answers to the myriad of questions that we're constantly asking ourselves as we adjust to our whole new way of living the rest of our lives!!!

One of my favorite attributes that I admire about you Robin is that you're not afraid to ask the "next question" especially when you can tell that the health care provider whomever that person may be - is really trying to end the "Q&A" session - CAPECHE??? Don't ever - in fact, DON'T YOU DARE EVER CHANGE THAT IN YOU!!! I say this emphatically because having that attitude is one of the primary reasons why you're constantly getting better at dealing with all of these sometimes overwhelming issues that we post transplant patients must cope with day in - day out.

So fight the good fight and most of all, when you start getting tired of fighting sooooo much just to survive, GET REALLY MAD!!!! GET DOWNRIGHT NASTY!!!
Sometimes we need to show this side of ourselves to our health care providers in order to jolt them into really paying attention to us once and for all!!!
At the very least, you leave them with a lasting impression they'll never forget about you.

Dios te bendigas mi amiga!!! Translation: May God always bless you, my lady friend!!! Oh yeah!!!  Even though I may just be a few days early, I almost forgot!!!

HAPPY ANNIVERSARY DEAR ROBIN!!!


Respectfully,
Hank

[robin]

Hank...you are a sweetheart. How come you are still single?  I know you like your emoticons  . so I thought I'd send a couple your way. Honestly, you are the source I deem most reliable, over my own physicians. So now that I did a my little ego stroke there, I'll say thanks for being here for me and for being you. I do depend on your observations and suggestions and always...keep your spirits high...robin

[hanklive39]

Gee Robin!!!

You sure know how to make a fella blush!!!

Look, you know this is part of divine intervention in some form or another so, let's not forget to give it some credit also, and I love you too ROBIN!!!

Respectfully,
Hank