Hi, Sorry it has been a while since I wrote. I read about your brother and you are most definately in my thoughts and prayers. I am doing ok. Terrible sinus infection that even a script for a z-pack does not seem to be helping. I guess I am feeling guilty. I have never been a big drinker and since my diagnosis I RARELY have a drink, but I went through a very emotional day Saturday and next thing I know I was pouring my heart out to a co-worker over drinks. Lots of them.WOW my body DID NOT LIKE THAT! Guess the doctors weren't kidding when they said alcohol could no longer be a part of my life. OOKAY i get it. Anyway the way I feel now you could not bribe me to have a drink. I know they say the liver doesn't feel pain, but I think someone forgot to tell my liver that! Hope you are well. More later. Just wanted to say HI
It was great to hear from you too. Sorry it has been so long. I have to admit that I have found myself over whelmed with some of the postings. So .....well I am sure you understand that. Anyway I am glad to hear you are doing well, and well I just want to say one thing on the subject of greif. By the time I was 37 I had buried my mother, brother, step son,husband and best friend. The one thing I can say is that in each instance the grief was different. There is no correct way to grieve nor are we given a script at birth. We all heal differently. It is an ongoing process. I wish you peace and solace. You are in my prayers. Don't forget to take care of yourself. We all need you, at least I have found something very special and much needed on this forum. Til next time.
Again thank you,
Pasey, good to have you back here! I'm glad you did that bit of drinking for me...now I don't have to wonder what it would be like! ;)
PinkGrandma, you might just have a wonderful idea there--a grief forum. Something for you to think about down the road when you are feeling stronger. You would be so good at moderating a forum like that!
Hello Pink Grandma and everyone...it's been a while since I've last posted. My husband Robert has end stage liver disease/cirrhosis, diabetes and pancreas damage. He's been sick for about two years now. He's on a liver transplant list through Mayo Clinic for about year with a current MELD score of 13. He continues to be seen by his GI doc to get banded for esophogeal (not sure on the spelling) varices (bleeding) about every 3-4 months. Considering his illness, he does okay most days and has some bad days. Lately he's been having swelling of his feet really bad, he takes the water pills about three times a day, stays away from sodium for the most part, but they still seem to swell. He's always cold no matter what the temp is. Just recently about two weeks ago he got banded, the GI doc said to us that Robert will eventually need to get that transplant one of these days. That his liver will do okay for about 2-5 years (after ESLD/cirrhosis diagnosis) before he starts to become more sick. I wonder if that's true? The things that he's going through now, I wonder if those are signs of this happening? Robert isn't too active because he does get tired easily. The docs have encouraged him to walk more and excersise a little more, but he just doesn't get motivated to do so. So I don't know, I sound like a broken record to him telling him the things he needs to do. So as a caregiver, I sometimes get frustrated with all that's going on, I wish it would all go away and we could back to living a normal life, without all the doctor visits, medical procedures, hospital stays, etc....I feel like we're always broke and have no money for a rainy day that I know will come one of these days with Robert's illness and transplant. But in the meantime, I continue to work full-time, we raise our 8 year old daughter, Robert has two children from his first wife, so he's expecting to be a grandfather sometime this week for the first time and has a son who will be graduating HS this year and off the college. So he does have a lot to look forward to in the future and I just hope and pray to god everyday, that someday this will get better. I'll continue to check back and post when I can....
Post Edited (hep93) : 6/17/2009 12:00:17 PM (GMT-6)
Hi Pink Grandma,
I haven't posted in quite a while. My husbands disease is progressing. The symptoms change everyday. His body hair is now falling out, his joints hurt so bad when he does get up it hurts to walk. He's falling alot now. He had a endoscope the other day and they found Varcies, so now we have a new medication. We were just in Philly for a visit with the transplant team, they are strongly encouraging him to accept a "non-perfect" liver. He's getting sicker but his MELD is hovering around 19. It went to a 25 for about a month but no donor at the time. He's been in and out of the hospital his ammonia level was 101 the last time. Some days I just wanna run far far away.
How are you doing? Keeping busy?
Thank you all for caring!!!
I'm not exactly an old friend yet. I haven't even got back to my first post to continue our story. I'm still here though. I just can't get it all done and am feeling overwhelmed. Tonight I have been handwriting letters to friends and family, people that have really come through in times of need. I just wanted to say, "God Bless You All." Amen