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Posted 9/3/2010 4:33 AM (GMT 0)
Okay everyone.  Especially the ones who haven't posted in a while....If you read this please take a minute or two to give us a shout out on how you are doing........We miss you......I know that life with liver disease is tough and that your life gets hairy and stressful.   You know we are here to help.  Looking forward to hearing from you all............Lot's of thoughts and prayers.........
Posted 9/3/2010 4:31 PM (GMT 0)
We are still here. Hubby back on the list, MELD is very low, but he's on the list. He's sleeping ALOT, no ascites, etc just generally feels crummy all the time. Me, I am back at school and loving it!! I have wonderful professors and am so glad I made this decision...it's actually a really nice diversion for me

Mer
Posted 9/3/2010 8:43 PM (GMT 0)
still here. just trying to cope...
Posted 9/3/2010 8:50 PM (GMT 0)
NC,  hang in there hon.  I know it's hard.  You have a lot of people thinking about you and praying for you and your mom........

Mer, glad to hear that you are in school........that will sure help keep your mind off of all the problems with your husband's illness.......

Thoughts and prayers........

 

Posted 9/7/2010 7:03 PM (GMT 0)

I have posted in a while, however most everything with my wife remains about the same. Fatigue is still dogging her, as she has good days and bad days. She had her labs a couple of weeks ago and her MELD score has gone down again, this time to a 10. Her dry mouth, and eye symptoms are under control, as well as her nausea. Her A1C was 5 last month, and her insulin dosage has been reduced to a total of 20 units a day (16 in the AM and 4 in the PM). Lasix, Aldactone,  Kristolose and Xifixan are keeping her ammonia and ascities in check, so she is very lucky in this respect.

Her hepatologist  increased her Nadalol from 20mg a day to 40gm. He wants to keep her blood pressure as low as possible to prevent a GI bleed from her stomach varcies. He gave us specific numbers for her blood pressure and heart rate to monitor, and if they go below those numbers, I am to call him immediately. I believe her slower heartbeat has probably added to her fatigue though, as it has gone from 70-80 down to around 56-60, however the doc says this is exactly where he wants it.

Charlie

Posted 9/7/2010 8:23 PM (GMT 0)

Charlie, thanks so much for the update.  I'm glad to hear that your wife is stable.  That's definitely good news!

Hugs,

Connie

Posted 9/8/2010 12:45 AM (GMT 0)
turn   turn yeah yeah Great news Charlies
Posted 9/8/2010 7:15 PM (GMT 0)
Thanks for the reminder to post. I've been reading the posts, but I have not been commenting much.

Things are going quite well. Frank's TIPS has taken on successfully and we have followed Rick's advice to live life as fully as possible.

We spend lots of time together just talking and have really rediscovered that we are each other's best friend.

We've done quite a bit of travelling since his TIPS, Mexico twice, Canada, St. Petersburg, and lots of day trips to Philadelphia and New York ... now we'll be heading off to Key West soon.

We know that things can turn at any moment, so we're enjoying the time we have and savoring every moment.

Prayers continue for all.

Rob

Posted 9/8/2010 7:22 PM (GMT 0)

Rob, it's great to hear from you!  Also great that you guys are traveling, enjoying life and each other, and creating a store of memories.

Be forewarned--FL is still hot and humid!  Take appropriate clothing and enjoy the sunset in Key West!

Hugs,

Connie


Posted 9/9/2010 3:22 AM (GMT 0)
Thanks for the updates everyone.  Good to hear from all of you.  Glad to hear that things are going okay and that you and yours are doing well. 

But there are lot's more out there that we haven't heard from in a while. If you think we've forgotten you ........you are wrong.  We are still waiting to hear from you .  

Thoughts and prayers.........   

Posted 9/9/2010 12:56 PM (GMT 0)
How wonderful Rob!!! Carpe Diem my friend... and what wonderful news... excellent..  so wonderful you have each other...absolutely positively wonderul to hear your news!! Sandi
Posted 9/10/2010 2:02 AM (GMT 0)
My husband has been doing very well since he came home from the hospital 3 weeks ago from a bout of high ammonia. I am almost afraid to say it out loud.

His ammonia levels have remained good and he has had no more outburst of rage. I think he was just feeling very afraid and cheated. He has started exercising and takes his meds faithfully. He has lost 4 pounds in about 2 weeks. Only about 35 more to go and we may be able to get him listed. He has been trying to fight the fatigue and enjoy life a little. I can't believe the change in him since he was hospitalized.

Every please pray that this continues, and thank you all for being here.

I am glad to hear that so many of you are doing well. You are all always in my prayers.
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