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Posted 12/4/2006 4:26 PM (GMT 0)
I have been reading this forum and I am looking for some answers about this disease. My mom was just diagnosed Oct 23 with ESLD and hairy cell leukemia. She spent 12 days in the hospital Did 5 days of chemo and was sent home. She went back in the hospital Nov with high ammonia levels still conscious and a little coherent. Yesterday Dec 3 ( she went into a coma while in the hospital and now is worst then when we sent her in. Last Tuesday they were talking about sending her over to Oahu ( she lives on the big island) for a liver transplant evaluation ( we were told she was a good candidate, otherwise pretty healthy) but now I am not sure what they will do. She still has not completely come out of this coma. What is others experience with high ammonia levels and going in and out of these comas) Does this mean we are at the end. Other stories seems like people go into these and come out and can function. 42 days ago my mom drove herself to the hospital. She is now completely bed ridden. We finally put a feed tube in so she can get the meds and nutrition she needs. BUt I am not sure what to keep doing! Any info would be helpful

Thank you,
Posted 12/4/2006 6:17 PM (GMT 0)
sorry 82,,im not really famililiar with patients going into comas,as my husband has not had that experience yet,,,please know your family is in my prayers daily though ,,keep us informed and I do hope your mom gets better
Posted 12/5/2006 9:46 PM (GMT 0)
Thanks for your prayers. We received a call this morning that she maybe only has a couple of hours. I can not get there until tomorrow because of the flight schedule. They moved her to the er where they are trying different things. She has a lung infection and her bp was 37/27 They are doing all they can right now. She has a do not resuscitate order but we are doing all we can . Thanks again
Posted 12/6/2006 6:34 PM (GMT 0)

82364, So sorry to hear about your mother. My prayers and thought go out to you and your family.

Teresa

Posted 12/7/2006 7:33 PM (GMT 0)
My thoughts and prayers go out to your and your family for your dear Mother.  Please keep us posted if you can.

Posted 12/9/2006 2:34 AM (GMT 0)
My Mother passed On Wednesday December 6 at 9:45 a.m. PST. Thanks for all the help and information on this web site. It really provides people with an insight into this insidious disease. It had only been 44 days since she was diagnosed. She went to the doctors so many times and they never found anything wrong with her. She never even had a chance to get on the list for a liver.
Posted 12/9/2006 6:57 AM (GMT 0)
My deepest sympathy for you and your family,,my heart and prayers go out to you.
Posted 12/9/2006 1:19 PM (GMT 0)
Dear 82;

My deepest symapthy for you and your family. My thoughts are with you.

Lucy
Posted 12/11/2006 3:12 PM (GMT 0)

I am so sorry. It is not easy, losing a mother. I lose mine 2 years ago. It takes time for the hurt to go away, I still think about her everyday and miss her everyday. But we both have the wonderful memories of our mothers. God Bless you! My prayers are with you!

(((((Hugs)))))

Teresa

Posted 12/11/2006 7:09 PM (GMT 0)
Thank you for all your thoughts and prayers. It has been very difficult. We are going through with an autopsy. Her death was unexpected. They feel there may have been some negligence. One day she was fine and the next she was in a coma and no one notice the change. I kept calling but they just said she was sleeping. When my sister arrived she said she looked like she had a seizure. I had called a 1/2 hour before and they told me she was sleeping. They had her up and walking 2 days before with a walker. None of this makes sense. She had an appointment for an evaluation the day before she passed. How could they be planning that and not know she was doing so poorly! I hope this will give us some answers. Again thanks for your thoughts It really does help to have people understand. My Mom was only 62 (no gray hair) She was so energetic and lively. She had no problem keeping up with me thats for sure! I will miss her so much.
Posted 12/13/2006 10:37 AM (GMT 0)
My prayers are with you at this very sad time. 62 is so young. I know you will miss her. I lost my mum (she was 71) almost 10 years ago and I still think of her often - i lost my sister (she was 55) in January this year and I still think of her every day. The old cliche that time heals is true but it doesn't help at this sad time.

I hope the biopsy gives you some answers.

My prayers are with you and your family.
Marg
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