((((Butterfly)))), I know that you must have been scared out of your wits. My husband never have a bleed but he did have his varices banded a couple of times. I know that it was my worst fear for him to have a bleed.
Thank you for sharing your story.........Liver disease takes so many different paths for each individual that I really don't think that most of the doctors know everything........including the Hepatologists. Yes they are the most knowledgeable about it but there's probably a lot they don't know.
I honestly believe that the people living with the disease have an inside advantage....but because we are not doctors .......the doctors tend not to take our word for it and blow us off sometimes. I think that what the doctor told you, he actually meant that in his training or his experience that once grade 2 it does not inprove to grade 1. But as everyone knows this liver disease ride is full of surprises. Each ride is different.
Take care Butterfly and as always you and yours are continually in my thoughts and prayers..........
Butterfly, how horrifying! I'm sure you were beside yourself. Refresh my memory: Were his varices ever banded? This is one area that I have thankfully not had to deal with, and don't know much about. I hope they can do the TIPS procedure if that will prevent this happening again.
My prayers are with you and your husband and family. Be strong.
Butterfly, that IS confusing. I would call his hepatologist on Mon. and find out what should be done...whether or not he needs the banding and if they are going to do the TIPS procedure. Ask questions and make sure you understand everything.
Holidays and weekends are not good times to be in the hospital--especially long holidays like this weekend. I had emergency surgery just before Christmas one year, after which my doctor was totally unreachable. I have also been in the hospital during holidays several times--once from just before Christmas straight through until after Valentine's Day...missed them all. Of course, sometimes it just can't be helped. However, do try to get things sorted out next week before you go ahead and put your husband through things that may be unnecessary at this time.
I know all this is SOOO frustrating!! I wanted to encourage you to "stomp your feet"!!! Your husband (and you) have the right to make sure any procedure or treatment you are receiving is explained to you very thoroughly!! And, if you are not satisfied with the answers you are getting....keep calling someone until you get the answers you are satisfied with. Call the chief of medicine at the hospital if you need to! I think I read on another thread that there may be another medical center in your area where there is a transplant team?? Pray about possibly transferring there. My husband's MELD was only a 6 when he was listed.....so I don't understand why they are telling you that his MELD has to be "higher" in order to get even evaluated. He's had varices trouble, which is definitely all the more reason he needs to be seen by a transplant team! I will pray that the right doctor will come in your path to give you answers....and peace!!!
Hang in there.....
I agree with mer. We are right in the middle of verices nightmare. My husband has had so many blood transfusions they are getting ready to do a scope on him again to see if they can see anything. His HCT was down to a 23. He got two units of blood today and needs more. Also he has started swelling again. They talked about doing a TIPS on him last year and decided against it. I was really glad they did becasue it makes it hard to control the amonia. I don't understand why you can not be listed either. What difference does the MELD score make when it comes to getting listed. The MELD is to determine where on the list he is. You need to seriously consider going to another hospital. There should be a whole team discussing this whole thing with you. Are you seeing a liver specialist> I sure hope so. You will end up doing what your husband wants in the end. I wanted to change at one point but my husband didn't. They get so tired and burnt out. As you know we do also. Just try and get some strength and keep fighting. We have to do it for them becasue they do get so tired.
I feel so bad complaining. I do not have to work and my children are grown. Every time I think I have it so bad there is always someone worse. I know what your talking about in the hospital or ER. It was like that all last year for me. I hope you have some releif soon. I know what you mean about your husband. One day I looked at my husband and said I miss you so much. He said I'm right here but only physically. He's not himself and I want my husband back so bad. Some days he will tell me how sorry he is that he is causing me so much stress and he will make it up to me when he gets his liver. He even told me the other night he will take care of me forever when he gets better. He's such a sweetheart!!!! Hang in there Mer I will pray for your family
I have a question for all of you. This damm disease. Jerry started gaining weight probably the day after Thanksgiving. He went from 175 (which he has maintained from several months.) to 202 lbs on Monday. He was miserable. Yesterday we went to the hospital for a Para after being there every day this week for either blood work or transfusions! Do you know how much they got??? A wopping 1 & 1/2 liters!!! Yes, I'm serious. It wasn't even worth the trip. He woke up this morning to both legs swollen twice the size!! I even made him sleep in his socks!!!! Why couldn't they get more fluid. WE go back to Vanderbilt on the 18th to do a scope. They want to see where he's loosing so much blood. When he had the Para's all last year up to JUly of this year they would always get 6 to 10 liters. Is this the beginning of the end??? His legs are seeping fluid also. I'm thinking the time has come. His MELD is a wopping 12! Then there is the rotten economy! He's had to make some major decisions now what to shut down who to lay off!!! YUP what next. Can anyone shed some light on this fluid thing. I asked the ultra sound tech and he said that is all they could get!!! I'm stumped. Anyone heard from John. I miss him.
Hello everyone, I am glad I'm not the only one and sorry I'm not the only one right now living in a nightmare. Jerry is really going downhill fast. For those who don't know, he had a liver transplant in 10/07 and was slowly recoving when we found out in May he has Liver cancer which has spread to his spine and who knows at this point. I know he has at least one fracture in his C-Spine and I think he has fractured another one and possibly his right hip. He is in so much pain all the time and is sick so much that he has no quality of life, he lays on the couch and watchs tv all the time. Wears a 100 mcg Fentanyl Pain Patch and takes oxycodone all the time. I pray that he last thru Christmas, but sometimes feel selfish for wanting him to suffer that much longer. He won't go to the doctor anymore, I want to take him to the ER tonite, but he won't go. All I want to do is cry. I don't know how much more suffering he can handle. This is getting harder everyday. I'm trying to stay strong for him and the kids (all adults thankfully), but it is not that easy anymore. He doesn't want hospise yet. Does anyone know if insurance will continue to pay for anti-rejection medicine when someone goes on hospice? I heard medicare won't, so I wonder about insurance. I'm sorry to vent like this, but I swear I'm about to go crazy. The only bright spots right now are the 2 new grandsons and the other grandchildren. Please take care all and I'll keep you in my prayers as always.
I wish there was something I could say to help you. I am SO SORRY> I personally think you need to talk to the Dr. about hospice. You just can't do this alone. He needs strong pain meds or something. Maybe even a hospital stay. Its just too hard on you alone. Let the adult children help if they want to you need some rest. I agree about those grand babies. We have 11 and they are so fun. Somtimes if only for a moment they make all the pain go away. Maybe they are doing that for Jerry. You are in my prayers.