Newbie, need kind hearts to listen to

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Areeland
New Member


Date Joined May 2009
Total Posts : 10
   Posted 5/17/2009 2:16 AM (GMT -7)   
Hi everyone, this is my first time here and you all sound so nice. I have recently moved and find myself all alone facing end stage liver disease with no support team. I have my husband, but he works 12 to 14 hours a day, so, I am left alone alot. I just wanted to say hi, and ask if you all would welcome another lost soul to your group. I guess I am one of the lucky ones, I have made it to a liver waiting list, but I am aware the demand is greater than the the organs they can obtain. Good luck to all of you who have this silent disease, and bless all of you who are caring for us.

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 5/17/2009 4:02 AM (GMT -7)   
Hi Areeland
So glad that you found us and know that you are not alone. I am so sorry that you are having to face this without your normal support system. This disease can feel so isolating without having all the changes that moving can cause. Try and keep your stress level as low as possible as it can cause all kinds of other issues.

Again welcome and hope to hear more from you.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/17/2009 10:51 AM (GMT -7)   

Hi, Areeland, and welcome!  We are glad to have you here.  I know we can be of help to you, both for support and information.  How long have you been on the waiting list?  Do you care to tell us more about your disease?

I have hep C and cirrhosis.  I also had liver cancer that metastasized to the inferior vena cava (large vessel.)  However, thanks to Mayo, I have been cancer free for nearly two years.  I live alone and this is my support group. 

I hope to hear more from you!

Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mermaid57
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/17/2009 4:49 PM (GMT -7)   
Hi Areeland, I am new to this forum as well, just joined today. My husband has end stage liver disease, and I am so glad I found this place - the info seems really helpful, and the folks seen so understanding. I am sorry you are adjusting to a new move and going thru this all at the same time. Hope you find some comfort here, I am hoping for the same for myself and my loved one. Julia

Areeland
New Member


Date Joined May 2009
Total Posts : 10
   Posted 5/17/2009 5:27 PM (GMT -7)   
Thank you for answering my post. I admit I have been very lost here since the move.
I can tell you about my illness, I have hep c and cirrohsis. I have been on the waiting list for one year now. I was diagnosed in 2007 when I almost bled to death from varacies.
To the best of their knowledge they are assuming I aquired this from a blood transfusion I had during gallbladder surgery.
It has been a nightmare since that day. It is almost like I am dreaming and can't wake up.
This move has been bad for me, I had so many friends, and now, no one, no calls, just alone all the time, it just seems wrong.
I am on the list at Mayo Clinic, and they say I am doing well for my condition. They are concerned with my weight. I have been on their diet now for a month, and nothing, I still weigh the same. How do you lose weight with this? I barely eat now. The nutritionist says I am not eating enough. If you have any questions feel free to ask.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/17/2009 6:06 PM (GMT -7)   

Areeland, which Mayo are you going to?  I go to the Jacksonville, FL one and also live here.  In fact, I would move to the Gulf Coast if it weren't for my liver disease and the need to stay connected and close to Mayo.   The good news is that Mayo has the shortest wait list in the nation for transplants.

You might want to look for a live support group in your area.  That would be a great place to get to know some people who would understand your condition.

I suspect that some of your weight is from fluid retention and/or ascites.  Are you on diuretics?  Have you restricted your sodium?  Are you able to exercise or walk much? 


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 5/17/2009 7:17:31 PM (GMT-6)


Areeland
New Member


Date Joined May 2009
Total Posts : 10
   Posted 5/17/2009 10:27 PM (GMT -7)   
I am going to the clinic in Phoenix Arizona. I am on water pills, and I do excersise at home. We just sold our car, and my husband is going to get me a tread mill, I have bad allergies and walikng outside is just not worth the suffering from them. I live in Midland Texas, I was in Tucson Arizona until my husbands job transferred him. We told them our situation, and they said take the job or lose it, so we had to take it, that is our insurance.
I kept a diary of my food intake for Mayo, and they said I don't eat enough salt to worry about it, I don't use it, and I don't cook with it, I don't eat prepackaged foods, I cook everything.
I have battled weight since I was 8 years old, I am on thyroid, so that could have been the reason I started gaining.
I am only eating between 900 and 1100 calories per day. No sugars either, I cut those out when my husband became diabetic.
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