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Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 9/2/2009 12:35 PM (GMT -7)   
Janie's MELD score remains at a 13, however she seems to be getting sicker each week. I am as tired as she is trying to work and manage  her 20 meds, doctor & ER visits, etc.  This is such a roller coaster ride, one day she seems to have energy and feels somewhat human, and the next day she doesn't want to get out of bed, she just wants to sleep all night and day. She says the lactulose makes her nauseous, but manages to get it down anyway as she has finally realized it's keeping her mind clear. There are times she doesn't want to talk to anyone, as she tells me she just wants to be alone. Needless to say regardless of how hard I try to understand, it's putting a strain on our marriage. There are days that I can't seem to do anything to please her, like it's my fault that she feels so terrible. At times I feel like I'm at my wits end and just don't know what to do next. We did get some good on August 21st, as we were notified that she is officially on the transplant list at Methodist Hospital in Dallas, Tx. The downside is that starting in December, she will have to go through all the testing process again, meaning days upon days of outpatients tests. Last winter these seemingly endless tests seemed to drain her energy as much as the disease itself. Sorry for the long post, I'm just exhausted and needed to vent.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/2/2009 2:14 PM (GMT -7)   

Hi, Charlie.  Good to see you posting.  That is great news that Janie is going to be listed for transplant!!  I know at Mayo here, they seem to try to condense 12 tests and doctor consults into 2 days and it is just too much for me.  I live here...5 min. away from them...so am able to get them to spread everything out over at least 3 days, with a day in between to rest.

The caregivers are often as stressed and tired as the patient, as they are the ones left to deal with bills and life's everyday problems, as well as the demands of the patient and doctors.  I know you have a lot of company here who can identify with you completely.  Just try to get some time for yourself, even if just one-half hour.  You have to recharge your batteries in order to keep going, or you will get burned out fast.

My energy level is always low because of hep C/cirrhosis, but I just had a major surgery and feel like I have zero energy right now.  I really just want to sleep and be left alone.  However, I force myself to get up and not sleep all day, making an attempt to get back to my normal schedule.  I know it's a very long recovery, though, so I have to be gentle with myself and ask for help when I need it.  Since I live alone, I do have to wash dishes, make myself something to eat, etc., whether I feel like it or not.

Feel free to vent here at any time.  You definitely are not alone.

Hugs,

Connie


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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/2/2009 6:52 PM (GMT -7)   
Hi Charlie, I am one of those who can completely relate to what you are going through. Been there.....done that kind of thing. Please know it's not you that she is mad at.........it's her body and the disease. People who are chronically sick and even those who aren't .......get cranky being sick. And they tend to take it out on the ones they love.......When my husband got too cranky.........sometimes I'd lose my temper and give him a good talk down.......then I would feel guilty about it.....but everyone is only human. I'd have to go take a walk and calm down......before I really said something that I would regret..........I remember once when he had made me so angry......I told him that I was the only person in his corner and that he had better shut up or after he died I was going to put his ashes in the cat box! The look on his face was priceless.........he shut up. But I felt so bad after wards that I cried and cried.........And no I haven't put his ashes in the cat box ..........

As bad as it got while he was sick..........I go through it all again just to have him back.

Connie is right, you need to get in some breaks to recharge your batteries. There's only one Energizer Bunny unfortunately. So figure out little things that you love to do and do them when ever you get stressed.
And that's what we are all here for........so vent away Charlie........Take care........

Thoughts and prayers.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 9/2/2009 8:49 PM (GMT -7)   

Charlie,dont give up on your wife, she needs you now more than ever. She is going through alot mentally and physically. She is I'm sure exhausted. Unfortunately we always seem to take out our stress on the ones we love the most. Suggest to her to cut back on her work hrs.When she isn't working shes probably having to play catch up with her sleep. I know this because I have esld and I,m on the transplant list. My meld score is 12{I get my lab work done again in 2 weeks} Hopefully it hasnt changed drasticly. I lost alot of weight but I've been maintaining it now,I drink boost or ensure atleast 1 time a day ,and i also eat small amounts of food through out the day and sometimes in the middle of the nite to keep my sugar normal. The Dr. also gave me a script for zofran for nausea,it does help and yes another pill,but we need to do what it takes to survive. I  work12 hr. shifts ,4 days a week ,but I finally admitted to myself I need to cut back and I plan on doing so in the next couple of weeks. Please dont forget about yourself. You need some r&r too.Maybe when she says shes tired and wants to be alone you can take the opportunity and do something for you.

My thoughts and prayers are with you both,

DeeDee

 


mermaid57
New Member


Date Joined May 2009
Total Posts : 5
   Posted 9/2/2009 11:12 PM (GMT -7)   

Charlie,

I can so empathize with you and your situation.  My husband is in ESLD and it is so hard on him and so hard on the whole family.  My husband deals with his sickness and guilt over not taking care of me, and the family.  He unfortunately has other complications and doesn't seem to be a good candidate for a transplant, although we are still working on it.  It is so hard to watch your loved one struggle just to get thru the day , and it does get very lonely when your spouse just sleeps and sleeps and wants to islolate themselves, so really , I get it and I am sorry.   I will keep you in my prayers.  

Today we were at the Docs and I looked down and there was a little earring with an Angel on it by my husbands feet.  We have the exact angel in our home, over the fireplace.  I am sure God is watching over us.  And I am sure he is watching over you and your wife also. Hang in there.    Julia

  

  


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/3/2009 7:17 PM (GMT -7)   
Charlie-
 
I just wanted to encourage you to hang in there!! I know how tough it is....my husband is also on the transplant list (pretty low on the list), and we have been battling this for so long that there are honestly days that I don't know how much more he can take or our marriage can take....but, on those days it seems God gives me an extra dose og strength and endurance to run this race!! We, too are listed in Dallas, TX, but not at Methodist....we are at Baylor. It does seem that they have to go through the ringer for all the tests, etc. What I can tell you, with our experience, is that once he went through the initial evaluation, we just have to have blood work done every 3 months and scans every so often. Currently, he is status 7 (inactive), though, due to the fact that he keeps having seizures and they have listed him as "too sick to be transplanted".....so, very much the roller coaster ride.
 
You hang in there....take some time for you and re-charge. Because, if you don't take care of you, you will be no good to your wife....
 
Prayers are with you
 
Mer

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 9/6/2009 6:14 AM (GMT -7)   
Thank all of you folks for your encouragement. I was having a bad day when I seemed so down. I re-charged my own batteries over the past few days, and am ready for whatever God's plans are for our family.  I have faith that we will get through this terrible ordeal with Janie getting a new liver.  It's comforting to know that I am not the only spouse having to deal with being the care giver for a love one fighting this terrible disease.  I will keep all of you in my prayers, and thanks again for keeping us in yours. 
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