“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."
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.
Mary, I just returned back home yesterday after having hip surgery on Aug. 12th, and cannot be online much right now...but I absolutely had to post to welcome you to the forum and tell you how sorry I am about your husband's diagnosis. I was diagnosed with hep C in '92 and with liver cancer in '05. The tumor was 11.5 x 8.5 cm and took up most of the rt. lobe. It had also metastasized to the inferior vena cava (a large vessel that runs off the liver.) Shands gave me no hope, so I went to Mayo. They treated me with a study drug that essentially killed the tumor and most of the rt. lobe. It also shrunk the metastasized part of the tumor back into the original tumor. It was indeed fortunate that the cancer had not spread to another site. Then, the entire right lobe of my liver was removed. It will not regenerate. I have been cancer free for 2 yrs. and 3 mos. There is no guarantee that the cancer won't return, but I am so grateful for the time I have been given. I am using some of that time to help out on this forum and to give people hope.
While your husband's case does seem terminal, I want you to know that you have many people here who understand and care. I hope you will get hospice involved if he returns home. They can be of such great help not only to him but also to you and your family.
My thoughts and prayers are with you at this very difficult time.
Mary, it does sound like a panic attack. Breathing is key. Try closing off one nostril and breathing in through the other, then opening the closed nostril and exhaling through that one. Then close that one off and inhale through the other, etc., all very slowly. This will stop an anxiety attack in its tracks. Or just breathe in and out of a paper bag.
The oncologist will probably note different treatments that may buy your husband some time, if not cure him. My thoughts and prayers are with you.
Shelly, that strikes me as funny, too!
Mary, how is your husband doing? How about yourself?
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, the best response to your husband's fear of losing you is to tell him to keep on drinking and he will assuredly lose you, as you will not stick around. Maybe that will get his attention.
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.