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Cirrhosis of the liver (end stage)

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Posted 1/26/2006 8:26 AM (GMT 0)
Thanks, TDT and Lerie. I know the nurse sounded a little alarmed when I told her the edema has been going on for a while and I hadn't seen anyone, although it has only gone up into the calf and other foot/leg recently. She did say that if I noticed any redness or hotness, to go to the ER immediately. I know those symptoms could be precursor to a clot. I slept from 5 pm until midnight, and have been up for 3 hours. I need to get back to sleep as I will have to get up again around 8:30 a.m. for my appt.

This cold virus still has a grip on me and is wringing every last drop of energy out of me.

Oh! I've noticed that some of the diet frozen dinners have much less sodium than their full-calorie counterparts. I do mostly eat the diet ones. I don't get packaged lunch meat...just deli turkey, and sometimes ham...although I know ham has a lot of sodium. I don't add salt to food. Sometimes I will eat a large baked potato for dinner. I want to get a small George Foreman grill, but can't seem to find one. Every store I visit online has only the larger ones, including Walmart.

I'll be back to report on my visit later.
Posted 1/26/2006 4:46 PM (GMT 0)
Hi Frightened, The pain is very severe a lot of the time .There's nothing you can do sweetie. The look in his eyes is Scarry I know.It's not that he doesn't want to be here anymore, just that he gets so sick & tired of being sick & tired.I feel this way too many times. we see the toll all this takes on our loved ones.Frightened,T, is right you can't do it alone. If you don't take a break you will get burned out then you won't be any good to either of you. On his bad days or whenever can you get a friend,family member or some type of caregiver relief to get out for awhile? Both you & Steve need this. Even 2 or 3 hours a couple times a week.If you can do this then Steve won't feel like he's being a burden. It's not easy for either of you sweetie,& being a caregiver isn't easy.Especially even more so if there is hepatic encephalopathy involved because our personality changes can sometimes be more unbearable than the liver failure. Even tho we don't remember unfortunately our family & freinds don't forget.Honey you can't let the how much worse take over, you need to put faith & hope in the better.I haven't heard any family members or friends talk about the hepatic encephalopathy much, I can tell you this when it's comming on we are kinda aware of the changes in personalities but because of the disease we are unable to control it,same thing with the hallucinations.When my husband gets frustrated & angry about whats happening to me he tells me he's taking the dog for a walk ,then he takes his beach ball with him & kicks the crap out of it to vent. Sometimes we just need to go in the bush & sream. Point is if you don't take a break & let you frustation out somethings going to give. Don't forget we are all here to listen & talk to you anytime. I salute you dear lady for the role of a caregiver is not an easy one especially for a spouse. Your a very special woman. Stay safe & stay strong dear one. My heart goes out to you & my thoughts & prayers are with you both. later....
Posted 1/26/2006 9:57 PM (GMT 0)
Hi TDT, Your right I should Consider this is God's intervention & I will go see him on the 6th.It's just that I don't know how I'll handle hearing another rejection or worse yet seeing the pain in my husband's eyes that I saw before. He keeps getting his hopes up so high. I wish I could keep his feet on the ground. But then again maybe this new guy will be able to get me a transplant. It's so much turmoil the first time around let alone doing all this again but I will do it.All 4 times I don't remember anything except tiny glitches here & there. Nothing that makes sense but everyone else told me it was really wild & some family members & friends said they couldn't go thru that again & withdrew from me..Because I don't remember makes it hard for me to understand what they are saying.You to are a very special woman to endure all this. What do you use for coping mechanisms? your husband & Frighteneds husband are so lucky to have you's for wives. I certainly know what it's like for the patients to go thru & a lot of it we don't remember but you caregivers have to remember it all & I certainly salute you both & all caregivers out there.I'm feeling unwell the last couple of days so I pray I'm making sense here. The stress of tommorrows ultrasound doesn't help any.I am so scared because I know exactly what this is about because the hepatologist I have now likes to make sure I know what the bottom line will ultamatly be. Maybe the new guy will be more hopefull. God Bless. My thoughts & prayers are with you . later....
Posted 1/27/2006 3:44 AM (GMT 0)
The P.A. said that a diuretic would not help with the edema, since it's being caused by the liver...or rather obstruction to the liver caused by the large tumor and the smaller one in the inferior vena cava. She prescribed thigh-high TED hose (compression stockings) which are much more comfy than the knee-high ones I have. She also said that they would have to do something soon...if the TheraSphere is delayed again or for much longer, that I will need some type of chemo just to keep me stable.

I'm really tired and have a lot of swelling tonight. More another time.
Posted 1/27/2006 4:08 AM (GMT 0)
Hi Hep93 I'm sorry to hear this news.My thoughts & prayers are with you. Hang in there sweetie. If you need to talk or vent we're here for you. Don't give up the fight we need you here to! God Bless you. later....
Posted 1/27/2006 4:10 AM (GMT 0)
My coping mechanism is, I put it in GODS HANDS. I PRAY for HIS WILL to BE DONE, not mine. When I try to control everything, it just does'nt work. You have to have faith to get through it. That does'nt mean that I just sit back and wait. But God does Lead me through the hard times. I do have to cry, I do have to hurt. When the stress is too much, I leave the house and do something for me. I might go to the park with Michael and Holly (my son and dog), watch them play or read a little from a book. I might take a long very warm bath, with candles and music to help soothe me. But I do something to chill and find peace. I had to learn how to cope, when I took care of my mother. She was my best friend. There were alot of highs and lows. I could not have gone through it, without GOD. You have to have acceptance, I have accepted the fact that my husband may not be here in a year. That is why I can cope, because I accept what the outcome can be. It does not mean, I will sit by and just watch. I am going to see that everything that can be done will be done, if that is Gods Will. Good luck tomorrow and I will be praying for you. HUGS
Posted 1/27/2006 4:16 AM (GMT 0)
Hi T,Very well put,noone could say it better than you did. I found to that only with acceptance came the ability to fight . I'll be praying for you to sweetie & you family there.later....
Posted 1/27/2006 4:36 AM (GMT 0)
Hello hep93,
I am sorry to hear the news. I will have you in my prayers.
Posted 1/27/2006 7:00 PM (GMT 0)
I do hand things over to God, knowing that the outcome is up to him.  In getting to acceptance, I've found that it's necessary to go through the stages of grief: Disbelief, Anger, Depression, Bargaining with God, and finally Acceptance.  It seems that each new thing that I am faced with in this disease, I go through the same stages...and they are not always nice and neat.  Sometimes I will go from Depression back to Anger, etc.  But once I reach acceptance, a weight has been lifted.

My household helper massaged my feet and legs this morning, then put on my TED hose for me.  I'm not feeling too well today, but I'm hanging in.

Bless you all.

Connie

Posted 1/27/2006 9:35 PM (GMT 0)

Well KU called us today Steve is officially on the Liver transplant List... It feels like a big weight has been lifted yet at the same time there's a lot of anxiety running through us... He seems to be a little at ease yet really scared now.... I'm sorry to hear that hep93 is having a rough day.. my thoughts are with you..hope you get to feeling better.. Lerie I hope all turned out well for you at the doctor... I'm glad to hear things are going okay for PN16 and her family..TDT I hope your family is having a good day..

I guess now we can start preparing ourselves for the next step....It seems like we get through one obsticle and another rises...I just don't know how I am going to handle things when that call comes...I'm so relieved that he is on the list but yet I have feelings of despare hoping he will make it to be called.I've been reading this book called coping with an organ transplant..it really has a lot of helpful info and some of the things we are feeling I am finding it very helpful...

I hope all is well for everyone today.... my thoughts and prayers go out to each and everyone..

frightened

Posted 1/27/2006 10:28 PM (GMT 0)
Hi Frightened, I'm so very ,very happy for you & Steve.Hang on to your faith honey. Stay in touch with us all.I will certainly keep you & Steve in my prayers. I Put in a new post with my test results in it.I'm really tired & don't feel well, I'll get back to you later. Your news has certainly been a bright spot in my day.I wish you all the best. later....

Tell Steve congratulations & tell him we are rooting for him!

Posted 1/27/2006 11:35 PM (GMT 0)
Frightened,
I am so happy for you!!!!! Just keep hanging in there. We had a good day also, our 4th day in a row!! The paracentesis went well, they took off 8 liters and infused 50 gms of albumin. His lab work was a little better. I must be doing something right with his diet, potassium and sodium were normal for a change. The meld score is now 17. alert and pleasant, today. Almost pain free today, just a few twinges here and there. His color looks pretty good too. HUGS and PRAYERS!!

hep93,
Been thinking about you today and praying for you!! Just keep hanging in there. HUGS and Prayers!!!!

Lerie,
Hope your test went okay. Let me know. HUGS and PRAYERS!!
Posted 1/28/2006 5:26 AM (GMT 0)
Frightened, if I could jump up and down in excitement about Steve being put on "the list," I would! That is fabulous! I pray that he will make it to transplant. Did you know that they are doing living donor transplants now, where a portion of a living person's liver is used for someone who needs a transplant? The livers of both donor and patient will grow quickly. Do you know of anyone who might be a potential living donor?

TDT, thank you for your thoughts and prayers. The TEDS are helping, but the left foot is still pretty swollen and tender. I've been considering buying a laptop, as I can't sit here for long when I'm so prone to swelling.

Connie
Posted 1/28/2006 7:06 PM (GMT 0)
Yes, we know about the living donor process... however KU does not do living donor transplants. If Steve wants that done we either would have to go to Columbia, MO or Denver, CO. He doesn't want to do the living donor process... Steve wanted to thank all you for your support. I had him sit at the computer last night and he read the replies...They touch him alot he started crying a little but you could tell he didn't want me to see that....Men always have to act like they don't have any feelings (maybe not all men) but mine sure does.. He is always putting on a tough guy act when he is really nothing like that.. Thanks again for all the support. I hope he makes it to transplant also.. Hope everyone has a good day

frightened

Posted 1/29/2006 5:55 AM (GMT 0)
Hi Hep93 A laptop sounds like the perfect solution for you.Then you could put your feet up for the swelling. How's your cold doing, I hope your feeling a little better.

Frightened,Yeah we know the tough guy act,but inside they're ***** cats. Tell Steve we'll continue Praying & rooting for you both.I'm glad you got him to the computer so he could see you's are not alone. Stay strong & hold on tight to your faith. God Bless. later....
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