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Posted 11/25/2008 2:22 AM (GMT 0)
After being Diagnosed with ESLD a month ago...2 Paracentisis in  a month  one  Blood  tranfusion.......Still a  MELD score  of   bout  14........We ve gotton  better  with  Duiretics....... and  life  is  better..... No  More  Ascities......Now  were  dealing   with  the  missmngement  of   diuretics....... She  passing  out   Dizzy.....too much fluid  loss.........wish  we  had  a  good  Dr  that  could   balance  her  Diuretic   dosage.........There are so many  here on  this  board  in much  much  worse  shape  than  my wife....I wish  just  to  curb  things   an  get  her  on  the  best  treatment in the  begginning.............were  getting off to   a  bad  start....Maybe  the  diuretics  are  triky  to  start........can  any one   relate?????????
Posted 11/25/2008 3:34 AM (GMT 0)
Windhover, never be ashamed to post!  I'm so sorry that your wife is having problems with fluid.  It is very tricky to balance.  I had a problem with low potassium in the beginning.  I had one doctor take a look at my blood work and he wanted to send me to the ER for IV potassium!  I told him I lived 10 min. away and would take potassium tablets when I got home!  But yes, I know what you mean.  It took some months of adjusting dosages until we finally hit upon something that works.  I take 40 mg of Lasix and 100 of Aldactone daily.  The Aldactone balances the potassium.  Taking potassium tablets or capsules just didn't work for me.  Sometimes I get foot cramps and then take a 10 mg potassium capsule.  That solves the problem.

Is your wife seeing a hepatologist or a transplant team doctor?  Those are the people who should be managing your wife's ascites and diuretics, etc.

You are at the beginning of a long jouney and it does take time to adjust things.  Just know that most of us have been through this and are here for you.

Posted 11/25/2008 5:39 PM (GMT 0)

Dear Windhover,

My best friend has been dealing with acute problems for about the last year.   She has hep C and cirrhosis and is in esld.   It took quite a few months for her to get her meds right and by that I mean mainly the diuretics.   When things weren't right she was in the hospital quite a bit back then.   Now that she knows what to take when, etc. she has not been in the hospital for over 6 months.  Hope that is a little encouraging to you.   Many things are the same for those with this horrible disease, they just come at different times.   However, I think the early management of meds and getting used to the fact that this illness has so many ups and downs are things that are typical for many.    The sadness of this disease affects all of us involved.   Your concern for someone you love is what is most important.   Keep coming back to the forum and ask or vent or just learn....   

Joan

  

Posted 11/26/2008 5:40 PM (GMT 0)
Hi windhover, I think everyone that's dealing with liver disease can relate to trying to balancing of all the meds.  It's a tricky business as everyone's system is different.  Everytime my husband went to the doctors his was being readjusted.  Hang in there ....I know it's frustrating but keep getting educated and be proactive in your wife's health care.  Don't be afraid to speak up to the doctors with any thoughts or ideas that you have.....Ask lot's of questions.  Once doctors know that you know a thing or two about the disease they tend to pay and give the patients and family more attention and education. 

Thoughts and prayers..........

Posted Yesterday 3:02 PM (GMT 0)
Windhover, Never be ashamed of posting here. I felt the same as you when I first started posting. That there are so many people here that are so much worse off than my husband, but this disease is a horrible, frustrating disease. It is too hard to deal with on your own. Coming here for support is the best thing you can do. It has helped me tremendously, and everyone here is happy to help.
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