Hello to you all. I am not sure in ways if I belong here. Maybe this is a place for me to start healing from my experience with cirrhosis.
My husband had a liver transplant on 2/25/2011. He had been in & out of hospital since 12/10 and then in 1/2011, was admitted again and did not come home until the end of march 2011.
He was 1st diagnosed with idiopathic cirrhosis in 2003, 2 months after we married. At that time, he was turned down for transplant because of his inability to be serious about anything and made jokes. Of course, it ddi not go over well with the social worker.
Over the years, he had bouts with problems and had to do B12 injections for years due to low platelets and of course low iron, etc.
In 2010, things really started happening. He was at the doctor's office many times and ended up with the varicies, confusion and on and on. His dr finally told him he needed to start thinking about transplant and finally came the final time when she told him she would not ask again. Well, he did agree to it and we did start the process. He went through a terrible time with shingles also. When I saw his eyes were yellow, I became very frightened myself.
He was hospitalized in Jan. 2011 and he had not been placed on the list because all of the tests had not been done. We were running against time. My husband became my 'golden man'. I kept asking him to lay the golden egg for me.
My two youngest children were asking about daddy. I took our 6 yr old daughter to see him, but could not take our 11 year old autistic son. So, I set my lap top up with skype, so the kids could see him when he was able to talk.
My husband was finally put on the top of the list on 2/17. It was such an awful time as my husband's children from another marriage and his family were calling me concerned with how I was going to handle whatever he wanted them to have. I felt like if he left me, I would have to get a restraining order against all of them to keep the 'vultures' away.
He was getting weaker and weaker. On 2/21, they had a liver! The donor was a 20 yr old donor who had been an iv drug user so he had to say if he wanted to take the risk. He said yes and on 2/25 after a grueling 17 hour surgery, he had a new liver.
His new liver is fine, but the anti rejection drugs are playing havoc with his kidneys. My husband also has Crohn's disease. His platelets are low again, probably due to the drugs he has to take....We still are riding the 'Beast'.
One thing that helped me get through things was a saying from AA which is "It is what it is." The 1 friend that was with me at every trip to UW is a recovering addict and when she said that, it opened new doors for me.
I have never had a break down from our ordeal even though at times small things will happen and I find chips of me falling off and I cry a bit. I still feel it coming and I am afraid.
Another of my friends who was a strong support during my time just lost her husband to cancer. I could not bring myself to go to the funeral. I have been beating myself up over that.
Now, I am being a support to my sister in another state whose husband has been diagnosed with end stage cirrhosis and it just breaks my heart. So, you see, I must still stand strong. His MELD score is not way up yet, but we know how fast that can change.
I must end this long introduction with this: My baby brother died just before I met my husband from liver failure and cirrhosis. I have never gotten over that weekend.
I want you all to know there is hope from the ride on the 'Beast'. Like any roller coaster, you will have ups and downs. Just take each moment and treasure them.
I would say to make sure you keep track of visits, lab works, everything as these things come in handy.
Thank you for listening.
Sarah
"When I was diagnosed about 18 months ago with fibromyalgia, I didn't know where to turn. I got on my computer and looked for a support group where I could talk to other people with the same disease and get some help...Information, suggestions, mostly just what I can do now that I have this.....disorder/disease/syndrome...I didn't even know what to call it. I found MDJ, and yes, there was a support group for fibro. I started a post, and figured I would never get an answer. However, very quickly I was welcomed in, and became really involved in the group. I received help, support, friendship and the feeling of being truly cared about by these strangers who had become like family to me. Now, I have been here for about a year and a half...I have become a group leader, and love every minute of it. It is so wonderful to be able to help others. I still receive help and answers from the members in this group. The fibromyalgia is where I go to help, support, listen, care and even laugh. I don't know what I would do without this group." (mabri)
