New Member Help!!!

sending you prayers and good thoughts.

Hi Mary and welcome to HealingWell. I am so sorry that your husband is suffering with liver disease. First I want you to know that you are not alone. We are here for you. We have collectively all either been through this or are currently going through it. We can all relate to your situation. It is devastating to receive the news that cancer is involved I know. I went through it with my mom. To answer your question oral anticancer agents are unlikely to cure him. At best it will give him a few extra months or years. I do want to say that miracles do happen and you should never give up hope. Realistically though it would appear that your husband is terminal. I also know that you have to take care of yourself or you will be no help to him. You have to get your rest and get some sleep. If not then you will get sick too. It seems like (at least for me) that it was impossible to get any quality of sleep because I was so scared that something would happen to my mom while I slept. The reality was that we all wore ourselves out by not sleeping while she slept most of the time. The best advice I can give you is to become as educated as you can about liver disease. We have an educational thread here that is in the Resources area under the topic area. Click that and you can get some insight about this disease. We have had several people contribute some great information there. You will find that coming to this forum will really give you some great support. Everyone is very caring and understands what you are going through. You can just vent or ask questions and the members will be there for you. I think it is important also to handle any legal issues that need to be attended to. Such as, a will, healthcare surrogacy, and a living will. It is easiest to do while he can still answer questions. Otherwise, there could potentially be some unpleasant issues late on. Now that you know the diagnosis you can write down your questions for the Dr. Take your time and make notes when you talk to him/her. If you don't understand what they are telling you then tell them that. Have them explain in terms you can understand. I wish you both the best and I will pray for you and your husband.

 

Hi Mary,

 

I’m so sorry you are faced with such a difficult challenge.  I was there no too long ago.  My husband was diagnosed with a rare liver disease, Primary Sclerosing Cholangitis (PSC), in 1994. At that time, the Internet wasn’t available to the average Joe then and very little information was available at the library.  I stumbled onto this site last year when his liver began to fail.  Regardless of diagnosis, ESLD End Stage Liver Disease patients share the similar symptoms.  This was the only site I found where patients and caregivers were speaking my language.  I cannot say enough about the support I gained here.

 

Shelly is right in that you are not alone.  Here you will find those who have loved and lost, those who are overwhelmed with the prospect of loosing a loved one, and those who have experienced miracles.  We all have incredible stories to share and you will find the most compassionate souls on this site. 

 

Don’t consider yourself as selfish as you are experiencing a natural human reaction.  Too few people achieve what you have—to be so connected to your husband that you cannot imagine life without him.  This is a rare emotion in this day and time.  You have truly been blessed.  Trust that if your husband doesn’t pull through that the Lord has a greater plan for him and you as well.  I don’t go to Church on Sundays as I should, but I thank God everyday for all that he has created.  You must take time to stop and smell the roses.  Life on this Earth is short.

 

My husband was blessed with a liver transplant in January of this year.  We didn’t think it would happen and he almost died on more than one occasion.  It was an uphill battle.  The experience brought us closer than ever.  Many people loose their mate suddenly without a chance to disclose their TRUE feelings—we on the other hand, embraced and confronted the possibility head-on  My love for my husband gave me the strength to pull through regardless of the outcome.  Love is a powerful force and can bring strength, joy and peace in the most difficult of circumstances.  It’s what helps us carry on.

 

I must go back to what kept me going through my ordeal, “The Lord doesn’t load you with more than you can handle” and “That which doesn’t kill you makes you stronger”.   Salvation lies within unconditional love.

 

You are in my prayers.  May God bless you.

 

Penny

I can't thank you enough for your kind words and support, it means so much to me!! I truly felt alone until I found all of you wonderful, loving people your words of comfort touch me. I feel that my husband and I are in the fight of our lives. I am waiting to hear from the nurse @ UCSF who will schedule Dave's appt. to see the oncologist. Does anyone have any info. on juicing or vitamins that we may start with? How about any miracle stories? I thank all of you from the bottom of my heart for responding it does help me when I'm so fearful. How have others coped knowing that your soul mate won't be with you much longer? What have others thought about their own future without their true love, how do you go on? I constantly have this over whelming fear about being alone, he truly is my other half. I pray for all of you and again thank you so much for the love you send.

Connie, thank you so much for your kind and inspiring words and thank you so much for even taking the time to post when you are recovering, you are an amazing women and I'm so glad you have been given more time to live life and help others, God certainly has a plan for you, we need you! I hope your feeling better and trying to take it easy? I had to take my husband back to UCSF yesterday because of severe pain, I'm not sure if the cancer is causing the pain or his extended belly but today they are tapping him again, he is sleeping because of high ammonia levels. Well, we finally have an appt. with the oncologist Sept.10th!!!!! I will know more and I pray there is some hope for us, that's it not too late. I was so tense yesterday driving my husband back to the hospital, I felt that I was avoiding every little bump on the freeway so it wouldn't bounce him around, when he was finally comfortable in the ER, I began to have shortness of breath and chest pains along with feeling like I was going to pass out and became so very tired I couldn't stay awake. I guess I had a nice panic attack or what ever the hell hit me. Boy, stress is such a powerful emotion, it had control over me and scared me really bad but at least I was in the right place, ha! Thank you, everyone for the time you take to reply it means so much to me. I pray for each and everyone and your families, God bless us all.

Mary, panic attacks are horrible. I suffered for a few years with severe attacks. I found that over time I could tell I was going to have one and was able to do a few things to stop it. First, I have to breathe deeply in thru my nose and then purse my lips and blow out slowly. The influx of oxygen helps to reduce the anxiety. Then I have to cool down. I don't know if you feel really hot when you have an attack but I do. I use cold water or ice on my face and neck. Then I use either one on my pulse points. That really helps alot. The deep breathing is really effective. I have to concentrate on my breathing and repeat the whole thing about 3 times. The ice or cold water slows my heart rate down some which reduces any chest pain I have. I went to the ER twice because I thought I was having a heart attack. They immediately realized it was an anxiety attack. The ER doctor told me about the cold water or ice. He said that in the 1800's they used to throw people in the lake to cool them off and stop the attack. For some reason I thought that was funny at the time. I could just imagine the panic that some felt when they hit the water and couldn't swim. Now, that would really increase their anxiety right? Anyway, maybe it is my sick sense of humor. If you have any more attacks you will eventually be able to feel them coming on and can nip them in the bud.

Mary, How is your husband doing? I know how you feel. I started dateing my husband at 17 and we were married at 18 and Im 49 now. If you read any of my posts about us then you know we both have hep c, chirrosis, and I have end stage liver disease. My husband is an alcoholic, stopped drinking for a few months and just started again. We had a long talk today and he is going to give it his best shot to not drink. We both have different ways of dealing with our disease. I am doing my best to fight it,but he just thinks about losing me. He says he cant be with out me. I told him he needs no be here if....... Im not ,for our kids and grandkids. He has to be strong.

Please be strong, and dont be afraid to cry when you need to or call someone to talk to, you are not alone and your family needs you and will be there for you and so will we.

My thoughts,prayers and love go out to you ,your husband and your whole family,

DeeDee

Connie,

I did tell him that. I told him that I need to worry about me now and if he continues to drink then I will get a divorce,that I dont need the stress and I dont need to stand by and watch him drink himself to death. I told him I love him and dont want to be without him but enough is enough. He told me that he wishes he could be like me and that he feels like a loser needing to go to meetings,even though he does like them. I told him I was proud of him admitting he has a problem and for going to the meetings and that i think of him as a loser when he drinks. So wish us luck/him, He seems to need more prayers than me. What a dreadful disease,addiction.

Take Care,DeeDee