Hello Everyone, I am Carol and I hale from SC!

Thanks Shelly I think we may have tried it several months ago. But I will try again. The itching did let up for a while but its back with a vengeance. The Dr. at Vandy don't understand why his itching is so bad because his billiburen (sp) was not off the charts. But that was a month ago. We do more blood work the end of this month. Thats for the info we will try it. The major problem now is keeping his hernia in. We just returned from Wal Mart again with some different tape to try something different. I don't think anything is going to work because its internal. He just has to try and keep it in. Thanks for the info. We will try anything.

JoAnn

    

        Happy Mother's Day, Everyone!!!

Hi Shelly and Pink Grandma,
Thanks for the kind words. Today is a better day, except for the fallout from not enough sleep and mind-fog.
Leg cramps kept me from sleep, so knowing that I had a Dr. appointment, I finally took half of a painkiller at 6am . I got 2 hours of sleep but missed the appointment when my mind-fog confused the time with another appointment. I crashed at 6pm and then missed an 8:00pm orchestra concert when I woke at 8:10. We had a post-concert reception so at least I was able to get there to help with food setup.
I'm guessing that we'll be upping my Lactulose. I'm dropping the ball on too many things.
Anyway, I feel pretty good and think that sleep will come tonight. BTW, it is a Jimi Hendrix night here tonight.
Thanks for being here! It helps a lot to have your company and insights.
Be well, John
Happy Mom's Day to All!

John and Shelly  I am just catching up on your posts.  Somehow I managed to do something to my computer at the beach and got behind.  We returned home on Fri.  If I repeat myself just ignore.  I have contomplated taking some of Jerry's Lactelose!  Our last week at the beach was stressful.  Vomiting returned even while taking Neomycin.  Even some blood.  The itching continued with a vengence.  I tried the Vit E.  I think I just needed to be home in the comfort of familiar Dr.'s and Hospt.  Jerry has an appt with the Gastro Dr. tomorrow.  He is on Hydroxizine twice daily for the itching and also Vandy has put him on a type of Anti Depression med.  They say they have had good results.  Neither is working as far as I know.  Of Course it might be worse if he weren't taking them.  Last night was horrible.  I think he got two hrs of sleep.  I finally convinced him to get up and sit in a chair.  He ended up trying it and slept some sitting up.  Poor guy.  IF I don't do anything else when this is over I will do anything to increase awareness of this horrible disease.  John I so admire you to keep up your public service.  In spite of how you feel.  Sounds like you are increasing public awareness. Thanks John also for the links on Liver Transplant.  I have read some.  Jerry's son wants to do a live donor transplant.  Jerry's MELD is a 16.  That was a month ago.  We will get a new score after tomorrow.  His body has always been much worse then his numbers and we are all concerned if he can make it to a score of 25 which is what they are telling him for O blood type.  I will continue to educate myself.  Sometimes my brain just gets too full.  Again Thank you John and Shelly for all you do.

JoAnn

Carol  Get some sleep and you will think clearer tomorrow.  Isn't it crazy just about the time you get over one hurdle another one comes right at you.  I do agree with you nephew.  You know how slow the process can be.  Before you talk to anyone about this call an attorney.  A lot of them don't charge for the first consultation!  Your head will be clearer tomorrow and you will make the right decision.  My husband had someone working for him that had cancer then heart surgery and he kept him on insurance.  I know most people wouldn't do that.  Hang in there.  Leave your house alone and go play in the dirt.

JoAnn

JoAnn, please...I implore you to get an abdominal binder for Jerry!  I am having to wear mine all the time now (even sleeping) as it's just too uncomfortable without it.  If I cough and don't have it on, it's awful...and makes the hernia even worse.  Thank God it won't be much longer before I will have the surgery to repair it (the 29th.)  I'm praying that this second repair will hold up.

My sister lives in Goose Creek, SC, about 20 min. outside Charleston.  I loved Charleston when I went up there to visit her one Christmas.  It reminds me of Savannah, which I also love.

John, I see that you and I are from the same musical era.  I just saw the film about Dylan, I'm Not There.  It was very, very strange.  Fitting, I suppose.  Nice to hear the early music like Positively 4th Street.

Hugs to all,

Connie

JoAnn, thanks for the reply.  I'm glad to hear that Jerry is wearing a binder.  From what you described, I didn't think he was.  Since I sleep on my side and the hernia is so large, it does bother me at night unless I wear the binder.  I was talking to my nurse friend in NYC late last night, and she advised me to wear the tight waist cincher after surgery 24/7 until the inside has time to heal.  I won't enjoy that, but I surely don't want to have to have a hernia repair for a 3rd time--and they probably wouldn't even consider it. 

Hugs,

Connie

Hi everyone. I am new and it is scary to read some of this. I have HCV, but generally I feel okay. I do itch a lot and I have cramps in my abdomen.

My doc tells me I could go on a high dose of interferon or on maintainence doses. I was on interferon about four times I think...I don't remember a lot about those years because my memory was horrible during the tx. However I do remember my dauaghter's wedding--and the kidney infection I had during it that I thought was going to kill me. Anyway, do any of you know about high dose therapy or maintaintance?

I work full time and also have a private practice and I sing in a church choir, so I am pretty active. Your posts are interesting and when I have more time I will read a lot more!

Camy

Hello everyone,

 

First, I want to say how sad I feel for Shelly and her family. It's hard to write when she has had such a powerfully sad passing of a family member and my husband is having such a good week with his own health. I'm sure she would be glad for him though.   

Terry has had 6 very good days!!! I don't know what it feels like to have liver disease and liver cancer. I can only see what it does to Terry and these past 6 days have been awesom compared to how I have seen this man in the past year. He's not 100% by no means, but he is awake and doing things for a good portion of the day. He is even going to bed at a decent time and getting up in the morning and staying awake, instead of falling back asleep in his recliner. 

 

I hope this is the results of the 3 cancer treatments he has had this year. I know his AFP levels have dropped from 50,000 to 14. The tumor did not shrink much, but the cancer is not active. The Nexavar must doing its thing also.  Thank God!  

He has another 4 phase liver scan June 16. I hope our insurance through Cobra has kicked in by then as I have already sent them there big fat check.

 

The company that Terry worked with, for 25 years, terminated him for being out so long. Now there is just a new list of things to deal with.

Connie, I read that you've had chemoembolization. I was wondering if you know if that can have any effect on HCV at all. Probaly not, since it goes straight into the tumor, but I was wondering if the Nexavar could effect it too. I know HCV effects the whole body, and Nexavar is targeted to the liver cancer, But I can hope.  Terry's viral load hasn't been checked in a long time.  I need to find out if his oncologist will do that test.    

I sure hope your surgery goes great. Do you have someone to help you when you get home?  I pray you have a quick recovery!

 

Carol

 

 

Itching.... if you like to soak in a tub.... take about 8-10 tea bags boil them then add the tea to your bathwater( also works for sunburns) Tea is a healing herb that gets forgotten it also helps with breathing. Actually had a doctor recommend it for a friend with ALS. Also any good Aloe lotion and the creams you get by prescription for diebetics feet work good. The changes in voice are 1 of 2 things shortness of breath and vericies also anti rejection drugs post transplant. My s/o has issues with his voice also so asked the doc. I make lists of the most mundane questions but i have OCD and that is the way I have always been. Also acidophilus dietary suppliment helps with the confusion and ammonia levels. It is replacing the good bacteria to keep the bad from over colonizing your intestines and also keeps yeast in check alot of hospitals here now use it and cancer centers of america use it for chemo patients. Transplant center here recommend it also. Its not a cure but it can help and no side effects. Sue

Hi Carol,

I'm so sorry to hear the news. Terry's period of good days was heartening and I hope that another good period will follow soon. You do have your hands full, but I hope that you are able to pull some personal time to recharge your batteries. We know that you know how important it is to keep you in good shape, so promise us that you'll take care of yourself.

Please keep us up to date both on Terry's condition and your mother's. I trust that you were happy with the hospice that your dad was at.

Be well, our thoughts and prayers are with you,
John

Carol 

I had this feeling you are a good organizer.  I bet you are a master of multi-tasking.  Enjoy the rest of your day. 

JoAnn

Hello everyone,
I have been very busy around here. Mom arrived Sunday nightand she was with Hospice by noon Monday. There has been people here everyday doing paperwork. It just wears Mom out, but it has to be done. I have been trying to learn her 13 meds and keeping her on a more regular schedule. The transition is hard for her, of course, but I think she will soon settle in. I just haven't been able to organize all of her things in her room yet. We have a small home and a lot of other stuff has to be re-organized. She wakes up at 4 am and I have been getting up with her becauce she didn't know where anything was. Now I can go back to bed for a couple hours while she has coffee and does her crossword puzzles. Terry gets up early too and sits and talks with her.

Terry hasn't been feeling too well lately. He gets the fidgets and couldn't stand it any longer, so I called his Dr. about it. He is trying Ativan, but we are not sure if it is right for him, because he has been having bad stomach aches and terrible gas pains. Not sure if the Med is causing it or food or something else. He is also trying Ambien to try and stay asleep at night. That doesn't seem to be working either. Now today, he has slept most of the day. I think we are all worn out. Things should settle down soon though.

Looks like a lot of people reading the forum tonight!!!

Carol