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I keep asking myself WHY ?

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Posted 12/16/2012 1:03 PM (GMT 0)
I have not been on here for the past week,not even to read about others,I have been to afraid of any answers I might see that would scare me more,but the reality is.I need some answers. I think I am in the deepest shock and sadness that I can say have ever been in,I have been through 2 husbands,one ended in his death,Mark having ESLD,my Gram living out her last days from ESLD and then the news I received this week.My oldest Daughter Jenn,has been having stomach issues for months now,back and forth to the Drs ect. 2 weeks ago they did a special scan on her,not sure what it is called,they thought she had a bad gallbladder and had a ton of blood work done. She got a call from her Dr telling her not to take any Tylenol or to drink any alcohol and she needed to go see a specialist,but that was all she told her.When she told me what the Dr said,I knew something was up with her liver ! Well,Tuesday she went to see the Hematologist,my 33 yr old daughter has liver disease ! I just cannot comprehend this ! The test results right now show a "fatty liver " She is overweight but not morbidly obese,she has only ever drank on special occasions,does not smoke,nor does drugs or has she ever. No hep has been found ! They have started her on Xifaxan for 10 days,the Dr said she has an infection in her bowels.She is going in for more testing this week,not sure what they are because she wasnt sure,lots and lots of bloodwork,same ones that Mark had when he went to be evaluated for transplant . They know that her whole Liver is involved,but she said the Dr needs to know if it has turned to Fibrosis or not. They have put her on a 0 fat diet,and she is doing great on it so far.She has called me everyday just scared to death,I am doing all I can to keep her upbeat,yet my insides are falling apart.When she is ready,I will turn her to this page,but right now she mentally cannot handle it,I cannot handle it,this is one of my babies,And I wish I knew why it had to happen to her.I am sorry for my rambling,where do we go from here,what can I do to help her ? This is not fair ! sad
Posted 12/16/2012 2:23 PM (GMT 0)
NEH,

This is, indeed, terrible news.

But Jenn is young, and with a proper regimen of diet and medication, it is likely she will level off.

I think you need to be careful not to scare her. But her calling every day, following her doctors orders about fat and alcohol, and taking her xifaxan are a good start. I would think she should avoid nsaids also untl they figure out what is what.

Has she had the Auto Immune Hepatitis tests?

Hoping she can settle down to a regimen that returns her to her normal self and that, with the meds and diet, she will be okay for years and years.

Hugs,

Mama Lama
Posted 12/16/2012 2:34 PM (GMT 0)
NEH,

  So sorry to hear about your daughter.  But..she is young and probably can live a long time with this.   I can't imagine how horrifying this is for you after all you have been through. 

  We care about you.  Keep posting and let us know how she is doing and any updates.

Angie1953

Posted 12/16/2012 3:22 PM (GMT 0)
 NEH , Don't get yourself all worked up . You are letting your mind jump to conclusions that aren't based in fact , The test have yet to establish anything more than a stomach infection and possible fatty liver . I understand your feeling of being overwhelmed with all the past and current issues with this disease , If you let this get you down you can't help those who depend on you .

Let's look at this realistically . If she has Liver disease and they catch it early she shouldn't have to deal with any more trauma than a average person medically speaking . Far too often all we see here is those who have reached the end stage so it's easy to see nothing but tragedy and shortened life spans . Think about Connie , David , Dany and many others who have posted here and went along somewhat unscathed for years and even decades without a hiccup . If she does have liver disease there is hope and it doesn't have to be the hell you witnessed .

 Don't you ever be afraid to come here and tell us when you need support . Yes , We can be blunt sometimes but more often than not it's what you really need to hear . Not communicating and bottling this mess up will make YOU sick , I don't believe a soul here is not capable of relating to you and your post . Keep us informed .

A. Ziffle

Posted 12/16/2012 7:43 PM (GMT 0)
NEH, I'm sorry that your daughter appears to have liver disease. But if it's fatty liver, it can be reversible with a little help. She needs to lose some weight and keep her fat intake to a minimum. Good fats, such as olive oil and avocado are okay. No fast food, as it's loaded with fat.

And ditto all that Ziffle said.

Big hugs,
Connie
Posted 12/16/2012 11:08 PM (GMT 0)
Thank you all so much for your support,I am trying to hold myself together as best as I can.I wish I didn't know so much about liver disease,that way I don't think I would be in "panic" mode.My daughter lives in NY,3 hours from me,I talked to my mom and she will go with my daughter to her next appt,for support. I think with both my Gram and Mark having ESLD it just makes it more real.I do feel better after posting earlier,you all have calmed my nerves down somewhat,so a big Thank you again !
Robin
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