newly diagnosed

Zo , Good to see you started a new post. I'm not much use in Hep.C discussions but the majority of our group here have experience with it. A lot of survivors and inspirational stories that may help you feel better about your situation. I'm sure the rest of the members will be along soon.


Ziff

Hi, Zoarie. Thanks very much for starting a new thread. Did your husband also have hep C?

I also think you are a good candidate for TP. Your age should not matter, as long as you are otherwise healthy. Do you have a lot of fatigue with the hep C? That has been my biggest complaint and what initially drove me to find a diagnosis. Of course, TP doesn't eradicate hep C and due to other medical problems that developed after TP, I have not been able to start treatment of any kind. Do you know what genotype you are? There is one coming soon for genotypes 2 and 3, with no interferon. The one for genotype 1a and 1b will not be available until 2014. However, they would probably want to evaluate you for transplant and push for that and do chemoembolization or whatever is necessary to keep your growths under 5 cm total, so you will qualify.

I had the same concerns you do for a caregiver. I have no close friends or family nearby. My long-time b.f. was my original choice, but he became ill right when I began my evaluation. He continued to decline and passed away this past April. I called a friend I hadn't seen in 3 years or so and hadn't talked to in at least a year and she agreed to be caregiver, but said she had already paid for a retreat out of state and couldn't be with me that week. I got my half-sister in SC to come down for that period of time, though she had to shut down her shop. Then the original caregiver got bronchitis on her trip and couldn't be in my presence. So my sister ended up staying 9 days past my hospital discharge, but then had to return home. It would just be me. I didn't know what would happen, but as our member, David, said, "They can't take your liver back." How true. So when I told them that my sister couldn't stay any longer, they said it was all right...that I would be okay. Whew!

Where are you being seen?

It's understandable that you would have a lot of fear, based on what you've seen happen. However, I believe your chances of turning things around are much better than theirs. I had trepidations about the TP itself, plus the lack of support, but one thing that made all the difference was being told that I could change my mind about it right up until the time of surgery. So I didn't feel trapped. And as I went along, my fears diminished and I decided to go for it. I didn't even have that opportunity with the first HCC in 2005. The tumor was 12 cm x 11.5 cm and had invaded the inferior vena cava. Shands said there was nothing they could do for me--basically giving me no hope. But Mayo saved my life.

So please don't give up. Think positive, pray, and be willing to fight for your life. You DO have control over some things.

Hugs,
Connie

hi connie,
thank u!
yes, genotype is 3. i know about the hep c returning, possibly with a vengeance. yikes!
i am being seen at chapel hill. any comments on that? that is where my husband went, and there r some doctors there that i really liked. the problem i have with it is the 4-5 hr drive and such painful memories. u asked if i was tired. yes, i am very tired, but find i am more sleepy than anything! i can not stay awake to drive. it was a horrible trip up to chapel hill. i was even dreaming and driving. i swear. several times woke up and had drifted into the wrong lane. i know how dangerous that is for others' (and me) but i really did not have an alternative. now i think i can get rides. on the return from CH, with no appointment to try and make, i slept at rest stops twice and that helped. also have diff staying awake around town.
what kind of problems did u have post TP? t
they have been in very close touch with me via tele and email, which i like. it seems as if they have it all together, and actually do things when they say they will. very unlike when ted and i were going up there.
i am so very sorry to hear about ur bf. did he die from liver related disease? how r u doing with that? u must b very strong 2 b on here, helping others. does that help u cope?
yes, my husband had hep c also.
u know, when i said i am not angry in last post? i'm not, but i do ask why. not , why me, if anything, why NOT me...but just plain why! when is enough enough?
3 yrs after ted passed, i got married 4 1 yr. NOT a good idea. it was hard dealing with it emotionally. r divorce was 6/28.. i feel i need some time to just be peaceful, and not have some major mind _____k going on. .if i get the tp, i feel i will not be relaxed or ok for a long time.
did u have any trouble with anti rejection drugs? i saw on my paper work i could b diabetic after tp, or may even need a new kidney. god!!! that is why i am so afraid. if i choose to do the tp, and those things start happening, or even some of them, i am going 2 b very sorry. when actually right now i do not feel so bad. i am getting the RFA as i mentioned, and that could hold me for a long time. the importance of this decision is huge to me. i mean sometimes i can't even decide which salad dressing i want! how can i do this? yes, i too was comforted by the not having to go with it if i did not want to.
do u live in florida? i hear they have more livers there than nc. do u find that 2 b true? were u double listed? the nurse was telling me about that today, but i don't think i could handle doing all this again, at another tp center. i love this site. i seem 2 b very long winded. i hope that changes soon.

Mr. Ziffle is here because like many of us, he is able to give advice that comes from experience. Like you, he is being seen at Chapel Hill.

I had a transplant 4 years ago and after a few setbacks, am doing well. As far as possibly becoming diabetic, or having problems with anti rejection meds, those pale in comparison to dying from liver disease. I was within a couple of weeks of cashing in my chips. It is a hard way to go.

My girlfriend abandoned me a couple of years prior to my transplant. I faked my way through the process by having a friend come to a couple of my visits, about a year before the transplant. My mother and brother came to the hospital after transplant, but once I got out, was on my own. It was a struggle, but I was determined to live and do whatever it took to get there. As Connie told you, she had to do the same thing, and she had more problems than I did/do. I can't say how you will do, but everyday when I wake up and see the sun, I know it was worth it.

Zoarie, prior to transplant, I wasn't really sick...never did decompensate. Just had the never-ending fatigue. And yes, I sleep a lot, too. At this point, 10-12 hrs. a night with a nap in late afternoon is the norm. I've been very tired since '91 and it seems to get worse every day. Recurring HCC was the reason for TP. The hep C doesn't really "come back" as it was never gone. It just lies in wait. I had symptoms just a month after TP. David didn't experience them for a year.

I didn't really experience any problems with the antirejection meds. I did hallucinate some in the hospital one day from the Prednisone and developed some bone problems. I also was "wired" and couldn't sleep or stop talking. No problems with Prograf or other drugs. As the high doses went down, I felt "normal."

Some patients develop hepatorenal syndrome post TP, or problems with their kidney function. But the TP team is very good at keeping a watch on kidney function and meds to keep things in check.

My b.f. died of end-stage COPD/emphysema....smoking for decades. He had been sober for 13 yrs. at the time of his death. He'd done various drugs in the 60s and 70s, but never anything IV or snorting, so no hep C. So he was lucky in that respect, but the darned cigarettes killed him. He had been so ill for 2 yrs., in the hospital more often than not...I only saw him 4 x in that 2 yrs. But I do miss talking to him on the phone.

I've heard good things about Chapel Hill, so I think you will be fine there. I don't drive at all...never learned...being raised in NYC and taking subways, buses, and cabs. So I usually take a van service for handicapped to my appts. and back home. (I have artificial hips.) When I had to be at Mayo every day and then 3 x a week for a long time post-TP, I had a neighbor take me there for blood work.

The Prednisone that is given after transplant can cause steroid-induced diabetes. Yes, it happened to me. They gave me insulin via IV for a few days and then by injection. When I was in ICU, they were doing finger sticks EVERY HOUR! Thankfully, my blood sugar returned to normal before discharge. However, they still wanted me to continue finger sticks and glucose monitoring for a little over a week after I got home. I almost broke down over this. My sister set up the lancet and I gave myself the shot. I was so thrilled when they said I no longer had to check my glucose.

I did pretty well, but did have an incision in the midline open up and get infected. So about 6 mos. post-TP, I had to be opened up again. The old mesh from a previous hernia repair was taken out and a new one put in. I had a lot of problems following that reopening, such as the large hole in the midriff that refused to heal (I'm still dealing with this, even after the mesh was taken out again and a Wound-Vac was used for 3 wks. to assist with healing.) I had extreme lower extremity edema with blood blisters around the lower calf and ankle/foot of my rt. leg and water blisters on the left. If you read my Blog from Parts 2-6, it will give you a good idea of everything I've been through. In the past 6 mos., I've had pleural effusion 3 x (fluid around the rt. lung) and have been drained twice with one approaching. No idea what is causing this.

I really need hep C treatment, but am waiting for a skin graft on the midriff wound, a cement injection of my L3 fracture, and other things before they will start me on treatment for the HCV.

Just because I've had a bumpy road doesn't mean that you will. If you are accepted for the transplant list, it means that they think you will do well both during and after surgery.

Hugs,
Connie

ziff,
where do u live? it is a 4 hr drive from me. i am outside of asheville. what direction r u in? oh yes, i've been there a plenty recently. gerber is going to do my rfa. do u know him? one of my favorites from when ted and I used to take ted there. there was an interventional radiologist named savas or something like that, that we both really liked too. i would love to car pool with u. i am having a hard time finding someone that can leave their children, animals, or jobs for 3 days for my evaluation.
i'm glad 2 know u know and like the unc group. i love hayashi.
take good care!

David - I like what you did i.e. faking it with a caregiver - I'm not even on the list yet and my choices are ever dwindling since husband left and my family not only doesn't understand the illness, they think I'm not trying hard enough. I certainly envy all the caregivers on here - you're knowledgeable and sooo supportive. My doctor told me it's easy for people to say they will help you until they actually have to do something. I hope I get strong enough to go it alone -I'm going to have to if I want to survive. Oh and my family don't like it when I go on this forum. Good Lord ... this forum is the only thing that helps me. My sister's answer to encephalopThy? Listen to soothing music!!

ziff,
excellent ideas. thank u!!i will do all the above.
hayashi spent thurs and fri in asheville and i was disappointed i didn't need 2 c him! he said i could come if i just wanted to chat, but i didn't want to.
my son works 4 us air. i can fly to raleigh for 75.00 rt. it cost me 80.00 for gas with my car rt. but then, w need to rent a car, or snag a ride to enc and then back. it is only 22 miles. i asked the tp moderator if they had volunteers or someone and she said no, take a cab. yea, right.
i miss all my vw vans and bugs! good 4 u to still have one, or getting one.
gotcha about the car pooling. won't work.
connie,
thank u for the clarification abt autoimmune hep.
sleep well.
z

Deb, we also have a handicapped transportation system here in Jacksonville, FL that is part of the JTA. The cost is $5 round trip. My handicap is bilateral hip replacements...can't walk far. And there are always medical issues going on. But they will not take me out of county. It's a door-to-door service and I use it most of the time. When I am having a procedure where I have to have someone with me, I get a neighbor to take me. I have a couple of really good neighbors, who don't charge me. I pay a couple of neighbors to take me shopping, to get my hair cut, etc. I am fortunate to live 12 min. from Mayo by car. I have never learned to drive, so that's not an option.

Mayo also has a group support meeting twice a week. I've never felt the need to go, but it's nice that it's available. A good place to start is with the hospital's SW in the Transplant Center.

I live alone with no family to help me, so I've had to do things myself or find out what's available to me. My Sr. apt. complex has a FT social services coordinator, so she has lots of info about services that are available for tenants. I've been able to get some info from her.

Hugs,
Connie

Deb, I'm sure you can. We are stronger than we think. And each thing that we accomplish makes us even stronger. It has also been very difficult for me to ask for help, as I've always been very independent. However, I'm learning and also reciprocate if I hear of a need that I can fill.

Hugs,
Connie

Zo , I've had a 65 bug for about five years now but owned a 69 several years back. They kinda grow on you ( bugs ) pun intended. I wouldn't be surprised if one of the hospital service vans didn't come by the airport, Something you might check into also.
If I might add to David and Connie's comments on helping with others. Zo you and others help out a lot of people just by being here, even if you aren't thinking about it. Your story or struggle is seen by tons of people that may not ever decide to join in a discussion here. The thought of being helpful and the fact that we may have saved a few lives keeps us regular posters coming back. We can't change the world or make miracles happen but we can be supportive to those whose lives we touch.


Ziff

Post Edited By Moderator (hep93) : 8/10/2013 8:54:04 PM (GMT-6)

Ziff is here to test Connie's editing abilities.