Worried even more

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AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 5/18/2009 1:31 PM (GMT -7)   
Today we met with the Transplant team at UMDNJ.... Well first let me go  back a bit....
 
My Mother in law has been doing so well, So I thought. She is not carrying any excess weight in her abdomen as the new medication Triamtreen(???) seems to have worked well. The swelling in her legs has also deminished, and her feet are only swollen slightly. She has been eating like a horse, and  been rather active during the day. She's no longer depending on the adult diapers, and is going to the bathroom on her own. She's batheing every other day and taking care of herself, with dressing daily which is huge since she was only wearing her pj's day and night since before she was diagnosed.
 
So today we met with the team at UMDNJ... she had blood work drawn a couple weeks ago, and I was really expecting them to say something to the point of ... "Wow... you are doing really well and now you MELD score has dropped". But that definately wasn't the case. Her labs are worse, but she seems so well. I'm very confused ... after all of the research that I've done say's that most people as sick as she is sleep most of the time, have don't eat well, and pretty much the opposite of how she has been acting.
 
Granted we had a fall several weeks ago, but she's been doing SO well. I guess I don't understand how she is feeling so well, when she is really getting sicker. Her MELD score is 22 where it was 20 before. Is this something that happens oftem, or is she just a way of her felling better before she get's worse?
 
I am also worried because she has lost a lot of weight suddenly.... She barely weighs 100 pounds now, where a couple weeks ago she was 135.
 
Any insight would be greatly appreciated.

AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 5/18/2009 1:44 PM (GMT -7)   
****Quick update****


I just got a call from our Transplant Nurse from UMDNJ... they are presenting her case to tomorrow. We are; Crossing our fingers that they will place her. The cardio doc... cleared her and that was the last test she needed for the evaluation process. Now we wait to see if and where she will be placed.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/18/2009 3:11 PM (GMT -7)   
Actually, that is good news, Amee.  It seems likely that she will be placed on the transplant list.  I can't explain why she is seemingly doing so well when lab tests say otherwise.  The weight loss is indicative of her worsening disease, though.  This is why we always say that each case is different and each patient behaves differently and has different problems.  Let her (and you) enjoy the positive now while it's here.  She is going to have a long road ahead, even if placed on the transplant list. 

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


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 5/18/2009 4:16 PM (GMT -7)   
Thanks hep93.

That's what I'm afraid of.... We are absolutely enjoying her feeling better. It's been great. I feel like she and I have bonded so much in the past few weeks. She as a drunk version of herself, hated me, and felt like I was not the person that her son should be with. We had such a hard time together. But because I love my husband I tried my best to ignore her hate toward me. But when my son came into the picture.... Like any mother, we instintively protect our children. I wouldn't allow her to be around him if she was or had been drinking. That made her even more angry.

But I can say today that my mother in law is very dear to me and I love her more than ever before. She has even started helping me plan for a Indian Wedding Ceramony for next year. My husband and I were married 4 years ago this May 25th, and we eloped and married at the court house. So we promised that we would renew our vows and have a ceramony for the family, next year. She is very happy with the idea. Now I pray that she will be here and healthy to see it.


I am just getting ready for the worst, but always praying for the best.

Thanks again.

AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 5/22/2009 5:29 PM (GMT -7)   
Major break through!!!

She has started her treament for Alcohol Prevention!!!!! I am so proud of her. I feel like a parent who's just watched them take their first step. In a way that is what she's done. The first day was yesterday, and she was up early, had her breakfast, took her medication and was ready to go before I was. LOL.

Today I had to wake her, but she still got up and dressed on time, and we were still early. I made her a carnation instant breakfast shake with fresh Raspberries so she could have that on the way over and she took her medication when we got there. I made her lunch, and packed her lots of goodies. I'm so proud of her. She is going to make it.... she's got fight left in her yet. She and I had a nice conversation in the car this morning as we waited for everyone else to get there. She told me a little bit about what they taked about yesterday at the first meeting. She said..." it's something that everyone has already said to me; but when a stranger confirms what you've been hearing, it brings it to a new light. It gives a new meaning to what I have been blowing off, and making excuse after excuse for, all of these years." She said that she feels so alive for the first time in a long time, and although she may not be here next year.... she knows that she is truly loved, and she thanked me for coming into her life.... Well I just broke down then, and cried like a baby as did she, but I think we have had our break through,,,, and this afternoon she went with me for a mani/pedi. It was so great!!!

I don't want to take everyones time up here, and go through the hard times that she and I had.... So I'll just say it was as loveless and harsh as the dead sea, for she and I for a long time. Lots of storms, and angry rants. But I am thankful that I am as stuborn as my father, and don't give up when the going gets tough. :-)

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/22/2009 7:41 PM (GMT -7)   

Amee, that is SUCH good news!  That first step is always the hardest.  I do want to caution you, though, that she may relapse.  It's normal for that to happen.  I pray that she won't, but there is what is called the "honeymoon" or "pink cloud" phase.  So if she relapses, don't get too upset...and just tell her to start again tomorrow.  It's truly "one day at a time."  It took me 6 mos. to stop relapsing...usually every weekend...before I finally honestly waved the white flag of surrender.  Fortunately, I've never relapsed since then, but some of us have a hard time latching onto sobriety.

Here is a hint that AA gives all newcomers:  HALT.  It's an acronym for hungry, angry, lonely, and tired.  She mustn't allow herself to become any of those, as they lead to relapse.

Keep us posted!


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


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 5/23/2009 1:51 PM (GMT -7)   
Thanks hep93!!!

We know that it could happen... and we will cross that bridge if we come to it. :-) As for the "HALT"... that is a great piece of advice and will certianly use that as a secret weapon.

She isn't going to AA, she's actuall going to therapy... AA will come afterwards. I don't see how she will be able to get any type of alcohol anytime soon as she lives with us, and I am home with her all day long, and am her only means of transportation. My bigger concern is that (IF) she does get the liver transplant, and starts to feel well, that she will be more tempted then, but that is why she is going NOW to the alcohol prevention threapy sessions. But, as you said..... we will alway support and encourage her to pick herself up again if she falls.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/23/2009 4:44 PM (GMT -7)   

I realize that she is not going to AA right now.  I was just imparting a little of my wisdom derived from AA.  Actually, I think that phase HALT is a good one for anyone...especially caregivers, now that I think about it.  We often just keep on going and doing and giving and don't realize how it can affect us.  So all of us can benefit from a bit of HALT in our lives.  smilewinkgrin

Your MIL is lucky to have you!


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


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 5/25/2009 8:04 AM (GMT -7)   
I'm lucky to have you all to help me get through this. You all are a huge support, and I cannot thank you enough. God Bless You, ALL!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/25/2009 9:29 AM (GMT -7)   
Amee, I meant to tell you that the drug is triamterene, a potassium-sparing diuretic.

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

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