Question regarding appearance/interaction

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Gwen75
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 8/9/2009 6:34 PM (GMT -7)   
Hi Everyone.
 
Tonight was the first time I have seen my friend since her diagnosis (which was last week).
Her appearance was far more shocking than I had imagined.
 
She is all belly, with a very drawn face, severe muscle wasting, and edema.
It was hard not to let my face belie my shock; but I am proud to say I didn't flinch.
 
Now to my questions/statements:
Her eyes were different.
Huge, dilated pupils; and they just didn't look the same at all.
 
Also, when I kissed her on the cheek, I tasted salt on my lips.
(She had been complaining about a taste of salt in her mouth)
Are these normal occurrences?
 
I tried to keep the conversation upbeat, but let her lead it. 
Without asking intrusive questions, I engaged and discussed her condition and did express concern.
I hope that I struck a happy balance??
 
I guess I am looking for feedback on how to make our interactions as productive/positive as possible.
As I know you all have experience with this, either as caretaker or patient, I would appreciate any feedback positive or negative.
I am not so good with these sort of things.
 
Thanks!
Best,
Gwen
 
 
 
 
 
 
 
 
 
 
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/9/2009 6:46 PM (GMT -7)   

Gwen, the swollen belly and muscle wasting are typical for ESLD.  When I had liver cancer and ascites, I could only wear very large, loose clothing.  I looked like I was 9 mos. pregnant.  Liver patients also tend to retain fluid.  My feet and calves were extremely swollen at one point, but we finally got the edema under control with diuretics.  I still have quite a belly, but it doesn't help that that is where excess weight accumulates on me.

As for the salty taste, I don't know unless she had been perspiring.  The dilated pupils could be related to a medication she is taking.  Do you know what meds she is on?  (Conversely, pin-point pupils are usually the result of taking narcotic painkillers.)

It sounds like you did well with your conversation with her.  Is she accepting of her condition?  Has she stopped drinking?

Hugs,

Connie


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


Gwen75
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 8/9/2009 7:13 PM (GMT -7)   
It was honestly the loss of weight in the face that struck me the most.
I do not know what medications she is on at this time, as she will not allow her partner to tell anyone her condition.
(He told me, of course)
Unfortunately, there is a misplaced sense of shame that comes with this diagnosis. 
She is experiencing that now.
However, I am happy to report that she is not drinking, nor does she have the desire to touch any alcohol.
For that, I am very thankful.
 
I guess that I am more surprised to see how much weight she has lost so quickly.
My assumption regarding the salt taste is that the diuretics are expelling toxins??
 
Many thanks for your words of wisdom.
I hope that my inquiries didn't come across as rude.
(That was my concern as I posted, but I just didn't know how else to say it.)
 
Best,
Gwen
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/9/2009 8:57 PM (GMT -7)   

Gwen, that's great that she's not drinking!!  That's the single best thing she can do to help herself.  People do get cirrhosis from things other than alcohol abuse...such as AIH and hep C.  But alcohol is the most common cause.  There's a stigma to having hep C, too, and I don't tell everyone I meet because of that.  I don't want to have to answer the questions about how I acquired it.  I sometimes say I don't know, but I hate to lie.

It's possible that the salt is from toxins being released through her skin.  I'm not sure about that, though.  Maybe Shelly will know.

You will know if you've tread on dangerous ground by her reaction.   So far, you seem to be doing okay.

Hugs,

Connie


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


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 8/10/2009 3:02 AM (GMT -7)   
there has been a few times that i have been really shocked at my mums condition. sometimes when she comes out of hospital she is very thin and frail, her spine is curved and the sking is very saggy all over her body. i have seen her change in a matter of days, when the fluid start to build up, her legs, get bigger, her face particularly jaw area, her stomach starts to swell. when the fluids are drained from her she looks painfully thin. at first i thought my god what has happened to her now i get used to it.
Gwen, you are a good friend it is natural for you to be shocked at your friends appearance,the main thing is you are there for her. its great she has decided to quit drinking, it is a good start.
rick, it is good to hear that you are making a good life for yourself without alcohol, you should be very proud of yourself, and i am sure your loved ones will be proud of your struggle. it is good to hear what you went through as it can helpme understand what my mum is going through. and for that i am grateful

Gwen75
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 8/10/2009 6:05 PM (GMT -7)   
Thank you All for candid responses to questions that were difficult to ask.
 
Rick,
A very special thank you for the kind offer of your email address.
As the situation progresses, one or the other of us may just take you up on that.
By the way- Congratulations on the marriage!  May you and your wife have many, many more healthy, happy years together!
 
Status update for those who are interested:
For now, she is stabilized; though she was readmitted to the hospital yesterday for severe edema.
Apparently, later on in the evening her ammonia levels were so high as to almost render her comatose.
As a result, she is now on Lactulose.
Hopefully, that will alleviate some of the ammonia buildup.
 
Doctor says her liver is trying very hard not to fail, but her kidneys are in danger.
(They were not able to process the diuretics she was on quickly enough.) 
They also did another paracentesis yesterday, which made her much more comfortable.
 
Sooo...stable is good.  (At least until her family can meet with her specialists and decide what further course of action will be required.) :-)
 
Thanks again to Everyone for such frank and honest feedback.
Best,
Gwen
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/10/2009 6:57 PM (GMT -7)   

Gwen, I'm glad that she is stable now and getting the care that she needs.  That is good news.

Please do keep us updated.

Hugs,

Connie


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

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