Meld

Hi everyone,
Something I read recently, on this site, made me realize I don't know all I need to know abt meld scores in relation to the list for transplant.
Right now my meld is 22. It turned To 22 when I was dx'd with hcc abt a month ago. I am in the process of getting a rfa. The have told me they probably can not ablate all 3 lesions, as the smaller one is hard to get to and the other 2 will take as long as my liver can handle and not decompensate.
My doc acted as if it is under control, saying something abt an "organic" meld and NOT losing my score post ablation. What did I miss? Will u explain that 2 me..? Now I believe I will lose my points and place, and it will all take much longer than I originally thought.
Freaking out that I could miss something as impt as this. I am very forgetful now. Does that make sense 2 u? ( I like blaming the &@$/)&@ cancer on everything:)but have to wonder what else I am missing. Seems like an issue with no room for mistakes. i don,t want any surprises. esp 1's that could have been avoided.
But the meld...what r they talking abt?
Thanks for ur time,
Zoarie

Carol is right. You will not lose your MELD score as a result of treatment. The idea is to bring the size of the tumor down, which has nothing to do with how MELD is calculated. And, as she mentioned, if you are on the list for 3 mos. without a TP, you will get another 3 points if the committee approves it (they almost always do...don't know of anyone who hasn't been.)

So calm down. They are doing the right thing, though I still don't understand why they are doing RFA instead of chemoembolization. I'm sure they have their reasons. Remind me of where you are being seen and treated. Do you know at what MELD score they generally transplant?

Were you given a paper with possible specialty pharmacies on it? You will need to make a choice and set up an account before transplant. The reason for this is that they will send your meds to cover the first month post discharge directly to the hospital before discharge. By then, the pharmacy will know what you will be taking, as the hospital will send the Rxs to them. They generally give 12 refills. I chose a pharmacy that I'm familiar with and that delivers to the home. Within a couple of months (once I was off the CellCept and Prednisone), I had my PCP write new Rxs for everything but the Prograf, with 11 refills for most everything, filled at Walgreen's with my insurance. It's easier for me that way. If the dosage changes on some meds, she writes a new Rx. I see her every 3 mos. She also handles my Lortab.

Hugs,
Connie

I have not asked them at what meld score they usually tp at, but I sure will now.
Connie I am going to unc chapel hill. I specifically asked them why rfa rather than chemo embo and hep dr said they feel they can be much more specific with rfa, getting the probe right into the lesions. He said they can not predict the blood flow they r dependent on for chemo embo, therefore, to them, it is less specific. What do u think of that? Does that ring true with ur knowledge and experience? Ted, my husband had a chemo embo first time, same place, etc and it held him very well for abt 14 months. When he eventually did have his first rfa, he was quite sick, and post rfa, it was downhill.
U or someone told me to calm down. i wish i could. I know I react terribly to all this. I am afraid of it. I was the exact opposite when it was Ted. I've thought a lot abt this and think it is because I went thru it all b4, acitis, drainings, encephalopathy, bleeding, and what ever else. Did this 4 yrs ago. I try and believe we r all diff and react differently, but the basics r the same for most all of us. The other thing I fear is I am alone. I really don't know if I can do it alone. Taking care of Ted was a totally full time job. I don't have anyone to run this stuff by, no one to bounce it off. And I do react too strongly. I would like very much to calm down.
Connie I have read ur blogs and am amazed at what u have gone thru. I impressed beyond words. I wish so much I had some of that. I meditate often, and find calmness while doing it, but an hr later I can b totally freaked out and very emotional.
I really question if I have what it takes to go back to war. I don't feel strong enough.
It's a new thing to me too, as I have never been a quitter. The worse things got, the harder I would fight to fix them.
May i will get stronger as the days go by. It's been a month since my dx.

Thank u carol, so much.
I've not checked into available help, but I did get food stamps, and medicaid. they will pay my secondary health ins, and they got me a free drug plan. Which I think is amazing. When I get back from my mothers I will ck into help. If I could get someone to drive me to unc, abt 5 hrs away, that would b huge. I can't stay awake to drive. I did it a couple of weeks ago and dreamed while driving. Stupid stupid. Dangerous. Ziff had some really good ideas abt ride help.
I took the xifaxan for 2 weeks and did not notice any diff. They r hugely expensive so I quit after 14 days. Now that I have a drug plan, I can get more. I have no money except my ss.
Thank u again for ur reply, it all helps.
Z

Zoarie, I did it alone and so can you. I'm nobody special. I just had no alternative. It was give up or soldier on, taking it one thing at a time. So just do the next thing ahead of you and don't waste your energy on "what if's."

It sounds like you've already gotten the ball rolling with help. Did you take the Xifaxan along with Lactulose? I've never heard of anyone taking Xifaxan by itself. If your insurance won't pay for the Xifaxan, you can get it through the manufacturer. That info is in the Hepatitis Resources folder, near the bottom.

Chemoembolization is targeted to the tumor(s), so I'm not sure I understand their reasoning. However, you have to trust that they know what they're doing and that it's in your best interest.

Carol is absolutely right. I never decompensated. Never had jaundice, encephalopathy, ascites (though I did blow up, but the fluid was under my skin...same thing happening now.) Had I been decompensated and really sick, I don't think I could have taken care of myself. The worst was after transplant and especially after they opened me up again and I started having serious problems. That was very difficult and I did have home health care 3-4 x a week for months. But they just did wound care, while the household stuff, refilling meds and taking them properly, getting to appts., etc., was all up to me. Still is. I usually take a handicapped van service to and from Mayo, though sometimes I can find a neighbor to take me.

You have just been diagnosed. It's way too soon to start worrying.

Hugs,
Connie

U guys r fabulous. Thank u all so much. I am traveling and at my mothers. I told her and she was great abt it. This fits into what u r telling me, to quit worrying so dang much!! I lost plenty of sleep over this one (telling my mother) and not only was she calm, she is so positive! A force I can certainly use right now!
Zif, link is golden. Carol, Connie, ur words and sharing ur experiences is really meaningful to me. Was it dani that said my mother didn't get 2 b 95 by freaking out abt everything? U all r right on.
Home on the 19th.

Thanks a bunch
Zo

Zoarie, so glad to hear that things went well with your mom. That's one less thing to be concerned about. Just go with the flow. Everything will work out just the way it's supposed to.

Hugs,
Connie

Deb, when did that happen? When did the rat tuck tail and run? What a coward!

Hugs,
Connie