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Posted 2/27/2007 11:17 PM (GMT 0)
Congratulations Cheryl:) I'm very glad all are doing well.
I would say that is hard to deal with,hubby bouncing back and forth,,,,,,I must say I am on the other end of all this,,,,,,,but I am the one that feels my husband is not there for me,,,,,I dont really know for sure what your husband is feeling,but as a caregiver,,,,, I can explain how I feel,and maybe it will help you understand? Most days I feel like my husband is angry with me because I am NOT sick like he is,,,though I go to school full-time,work part time,have 2 teenagers, 3 grandkids, do 90 % of the cleaning, cook hot meals at least 3 times a week,all the grocery shopping, take care of his meds(13 of them), make most of his drs appts, go to him with most,, its just not enough,,,,he tries to find more to fit into my schedule,and cares nothing about me having time for myself. He is rude to me, doesnt appreciate me,and does his best to live his life either sleeping or doing models,,,,,,and I mean for literally hours,,,,,he can work on a model for 20 hrs straight,,,,,yet cant do a few loads of clothes,,I am not sure the point I am making here,,,,,I guess its that,,as long as your not treating your husband like mine treats me,he shouldnt be wavering while your going through such a tough time,,the job of the spouse,no wait,,,,,,,not the job,,,,,,a husband should WANT to be his wifes foundation while she is going through all that your going through...maybe your husband is feeling some depression,or anxiety,and this is causing him to take it out on you,,,I have had to be on anti depressants and ativans a few times since the beginning of this roller coaster we have been on. Liver diseases take a HUGE toll on the patient,,,,but a huge toll on family too. Maybe your husband is acting this way because he feels that he has no control over "fixing" you,and feels helpless,,,,,,which makes him push you away,without meaning to? I dont know,just some thoughts,,,hope you can work this out so that you feel secure doing all this,,,,,good luck
Posted 3/8/2007 3:13 AM (GMT 0)

Hi,

I am new here and have a couple of questions. Hopefully someone can help.

My sister has been told she has end stage liver disease. And has been put on the

transplant waiting list.  Her MELD is 27, I understand the concept of the MELD,

that is goes from 4 to 40. But I am wondering is she is at 27, how serious is that.

And if anyone can point me to any helpful sites to better understand what she

is going though and how long she may live if she has to wait too long for a new

liver.. She lives in FL. and I am in NC. So it's hard to find out everything, as she

is confussed and forgets alot of what the doctors tell her. I know that this is

part of the disease also.  Any help or direction would be gratefull.

Thanks

Denise

Posted 3/8/2007 4:11 AM (GMT 0)
First of all welcome Denise, I am sorry to hear about your sister. To be put on the transplant list is great news though. To be put on with a meld score of 27 is pretty high. She must be pretty sick. My husband was put on at 18 with a cancer exception which gave him a score of 22. At 22 his doctor said that he would probably wait for about a year. Now that's in California. Florida's waiting list maybe smaller and with meld of 27 hopefully it will be less than a year. The trick is for her to stay healthy enough so that they don't take her back off the list. Thoughts and prayers with be you both.

This part is for Cheryl.
Being a care giver for my husband is the hardest job I have ever had by far. Trish is right. It is very hard to do double back flips for someone who doesn't appreciate it. I love my husband dearly but yes there are times that I just want to run away. But will I? Not a chance. I know that he doesn't mean most of what he says and that alot of his personality flaws are coming from this disease. I am not sure how I would be acting if it were me. I don't let him get away with it though, and give back as good or better than he gives me. Cheryl because you are not feeling well all the time maybe little things that would normally not bother you iritate you. I keep telling my husband not to sweat the small stuff that we have bigger problems to worry about. Your husband has to be scared to death as I know I am. And when someone is scared they don't always know that right thing to say or do. I put my foot in my mouth alot when I am scared. I have also said some hateful things to my husband in the heat of an argument that I really didn't mean. But one thing that I can do that my husband can't do easily is say " I'm sorry" and " I love you". I hope this has helped you. My thoughts and prayers are with you and youir husband. :-) Pink Grandma
Posted 3/9/2007 6:44 PM (GMT 0)
Denise, welcome.  Where is your sister located in FL?  I am in Jacksonville where there is a Mayo Clinic.  They have the shortest wait time for a liver in the nation.  They are affiliated with St. Luke's Hospital, although Mayo will be opening their own on-site hospital next year.  If it is possible for your sister to get trreatment at Mayo, she will not have a long wait time for a liver.  The do NOT take HMOs or Medicaid as a primary insurance.

Good luck,

Connie

Posted 3/10/2007 1:56 AM (GMT 0)

Thank you all for your kind replies.  Connie, my sister lives in St. Pete.  She is going to Tampa General for the transplant there.  They say it is one of the best in the state.  I sure hope so.   As I hope it won't be too long a wait for her.  She is not doing so well.  She was in the hospital last week and had to have two blood tranfusions.  She is home now, but getting very frustraded.  She is weak and has lost more weight and is tired all the time. She is trying to be brave and fight but I know it is so hard on her.  I just wish there was more I could do for her.

Again thanks for all the help and concern.

Denise

Posted 3/13/2007 11:58 PM (GMT 0)
Hi wheredidigo,

 

Sorry I did not see your post still trying to get used to using this site.

I really appreciate your input from the other side of the spectrum.  Men usually expect women to do it all for them anyway, I used to do it all too.  Work take care of 3 kids, cook , clean, shop, take care of all appointments for everyone and do all the banking and running as well. I am an outgoing person and my husband worked and drove 1hour back and forth to work.  His Mother (he is an only child) recently passed away which did not help this situation out at all.  He literally had to make the decision to take her off life support. I was there to support him at that time they thought I had lupus I did not.  Little did I know 3 days before I was hospitalized and almost died my father had a stroke I went home (we live 100 miles away from them) and I went through Easter not remembering what happened their and who I even talked too.  It was then I knew something was seriously wrong and went to the hospital and it was a good thing I did.  Your husband is angry period that he is sick, he is also afraid and that is why he wants you around as much as possible, he is probably feeling if you are not their he may die.  That is how I feel as well.  As far as the rudeness that is because he does not want to be sick and who better to take it out on than you because he knows you and trusts you.  My husband is angry so are my kids, they are also in denial I may look fine but I am not they forget and think Mom can still do it all.  My husband is scared depressed, angry, and is afraid he does not want to loose me he also does not want to see me the way he had to see his Mother and also make anymore decisions in that way.  He feels if he distances himself from me it will be easier in the end.  I told him it would never be easy.  He did take that into consideration.  I encouraged him to see a therapist as I do mine says I am doing well ha I told him I was faking it and he said fake it till you make it.  My husband also suffers from bipolar and apparently a stressful event can highten the episodes of mood swings with inappropriate behavior like I needed that now.  Anyway he also recently retired so his days are boring but he will not lift a finger to clean I have had to either do it myself when I have good days, threaghten my kids, or hire someone.  That is really a low blow here.  I really appreciate your thoughts and feelings here it helps me see the other side of things.  I know I am angry, and I know everyone else is too.  We also have a home therapist that comes to the house once a week for family meetings I am hoping that will help the worst of it all is both boys still at home one 13 my husbands son and my 14yr old son both lost a parent within the past 2 years we have had 7 deaths in 2 years of family and friends this does not help the situation much either.  There is an organization through the United way it is calledFaith in action Della Reese the renowed actress is a part of it they are a respite service that will come out to your home and stay with your husband for 4 hours a week free which would give you time for yourself.  They also help with many more things if you type in Faith in Action it will bring up all the sites one close to your area I am sure I had this service for a long time since I go to the Doctors hospitals and have tests weekly it is now hard for me to keep appointments with them.  I am sure I will get back with them at some point in time  hopefully we can be of help to each other I again appreciate all your kindness and wish you the very best.  I will see you in chat my logon is ihbsn thanks so much.

 

Cheryl

 

Posted 3/14/2007 12:11 AM (GMT 0)
Hi PinkGrandma,

 

Missed your post as well.  I also appreciate your point of view.  I do appreciate all that my husband does for me.  I know he is scared we all are.

The meds alone have played a big part the higher dose of prednisone I am on the less tolerant I am also irritated and feel aweful now that it is being tapered down I am feelilng much better.  My husband and kids are afraid that I may die.  My kids lost thier dad to suicide two years ago and my stepson lost his Mother to brain cancer a year ago.  My husband also lost his Mother last year and he had to make the decision to let her go.  He does not want to have to do the same for me.  The last thing I wanted for anyone is to loose me.  They all have lost a very special person in their lives and to loose me maybe on top of that is implorible to me.  I will fight to the bitter end and have prayed to God for 5 more good years.  Not looking so bright right now.  Everyone needs me I know this, I also know they will get along without me.  But we all are angry and they all are in denial.  My husband also suffers from bipolar this does not help.  We almost got divorced over this but since have reconciled I purchased a new house and my husband and the boys are fixing it up I just have to learn to shut up about the mistakes made during that process and appreciate it more.

I appreciate all your comments and applaud your efforts I have been a caregiver and know how much it takes its just a little harder if you are on the other end.  I force myself to do what ever I can I refuse to be down only when I have too.  As you can tell today is a good day.  I thank God for each and everyday and have learned to take one day at a time.

I have also learned through this process honey works a lot better than

angry and bitter words.  I appreciate your post and wish you the very best keep in touch.  See you in chat my logon is ihbsn

 

Cheryl

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