MELD score dropped

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La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 8/9/2008 12:51 PM (GMT -7)   
I am so bummed out.

Hubbie had blood work done last week at the Dr. appt.

We found out yesterday that his MELD score went down!!!!!! It went from 19 (three weeks ago) to 15.

So... as far as us getting another "CALL" right now, forget about it. (In fact the Dr. told us that he was pretty sure that Hubbie got THE CALL through a 'back up' situation). In other words, Hubbie was never at the top of the list, but a few poor souls on the list above him either expired or were too sick for the procedure or were not available to answer THE CALL. (Find that hard to believe).

The depression around here is so thick it gags you. Ugh. He was just distraught when he heard the 15 score.

I have been living in a world of distraught for so long now that I have to ask myself "what is distraught"?

I am as emotionally ill as my husband is physically ill.

Just checking in. Bet you are all soooooooo glad to hear from me, The Original Bad News Bear. Somebody should paint a big "X" on our front door to warn folks to STAY AWAY.

Jeez...........................



<FONT color=#800080>"Courage is the art of being the only one who knows you are scared to death"


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 8/9/2008 1:54 PM (GMT -7)   
(((La Bunna))), I know it is very disappointing, but keep the faith. It will happen. Maybe not as soon as you want it to, but it will happen.

It's time to recharge your batteries hon. Please be good to yourself you deserve to pamper yourself right now.

Lot of thoughts and prayers going your way..............
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.


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 8/9/2008 3:53 PM (GMT -7)   
Hi La Bunna, I know exactly how you feel!  Getting through this is so hard and I am an emotional disaster too!  My husband is not even on the list yet and sometime's I wonder if I will make it all the way sad .  This forum is such a great place to "vent" and their are so many other's going through this with us and they are the only one's who understand how UGLE this disease is,then I read John's post and was so thrilled for him it just made my day yeah .  Wishing you the best,
 
Judith

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/9/2008 8:56 PM (GMT -7)   

OK LaBunna

I want you to know I think there is more depression at my house then at your house.  Your hubbie went from a 19 to 15 Mine went from a 17 to 11 Na Na Na.  We already have a big red X on our door and the depression is so thick in our house we can't even see each other across the room.  No one comes to visit because they don't know what to say to us.  Our news is always BAD.  Now this last thing at Vanderbilt!  They just dumped us~  Jerry just got two units of blood and is acting really strange.  I don't know if he getting dehydrated again or just high amonia from low blood.  We will see tomorrow.  I'm sure there is more bad news but my brain won't let me remember it for survival!  How in Gods green earth do people survive all this ugly stuff going on ALL the TIME!  I'm so over it but I know we will all keep going.  We have to!  I KNOW if it was me that was sick Jerry would take care of me.  And you know your hubbie would do the same.  I just want my life back.  Some day I pray it will be close to normal.  I feel as though I will some ugly scars from all this.  I know it has changed me.  I don't feel like the same person I once was. Do you??  I'm just so tired I don't even have the energy to pamper my self.  What is that by the way do you know?  Pamper I'm going to look that up in the dictionary!  I guess I need to get some sleep.

JoAnn

I think I just had one of my mini melt downs.  Why don't I feel better?

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 8/9/2008 9:20 PM (GMT -7)   
((((((((((GROUP HUG))))))))))))



sad eyes sad eyes sad



Lot's of 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.


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 8/9/2008 11:23 PM (GMT -7)   
Hi La Bunna and JoAnn,

I'm sorry to read your posts. I can't begin to imagine how you feel. You know that we worry for you and hope for the best.

There isn't anything that we can say to brighten your day, but know that our thoughts and prayers are with you and your husbands.

Take care of yourselves, please!

Best thoughts, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/10/2008 12:42 AM (GMT -7)   

{{{{{{{{{{{{La Bunna}}}}}}}}}}}}}  and {{{{{{{{{{{{{{JoAnn}}}}}}}}}}}}}

You ladies deserve some Purple Hearts for valor.  My heart goes out to both of you.  I wish there were something I could say to make you feel better, but I come up empty.  Just know that we are all here for you.  Also, that everything is in a constant flux, even though you may feel as though your situations are backsliding or standing still.

Try to believe that there is a reason for everything.

Can someone explain to me how a person who is so ill with liver disease has a MELD score that improves (goes DOWN?)  I hope I never have to experience that.  Which is one good reason I need to gather whatever inner strength I have left and trust that God will see me through a year of hep C treatment and feeling totally lousy, when I'm just now beginning to feel good again.  eyes

Hugs all around,

Connie


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 8/10/2008 4:27 AM (GMT -7)   
LaBunna and Joann

My heart goes out to both of you. Noone deserves this rollercoaster ride that we all our on that feels like it will never end. Please remember to take care of yourselves too. I know how hard that must be for both of you. Please remember how special you both are. We all deserve to vent. Please keep your chins up and hope alive in your hearts.

We all care for you

Lucy

La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 8/10/2008 7:09 AM (GMT -7)   
Sadly, I too, don't know what the word "pamper" means any longer.

I spend my days just trying to survive this chamber of horrors that our life has become. I've given up on "cute". I've given up on "fashion". I've given up on "hair". I can still do "clean". And . Lord yes, I can still do "responsible". I've become so responsible that I don't recognize myself. I used to be a twinky. I used to be a girl. Now I am a hepatology nurse with a degree in pharmachology. (Is that a word?)

Twice as sadly, no, I really don't think hubbie would be doing the same if it were me that were ill. Not that he doesn't love me to death! He just doesnt' have it in his personality. He was always the 'spoiled boy'. By first his late mother, and then his maiden aunt, and then by all the girlfriends and then (gulp, I did it to myself) ME. He was catered TO. He doesn't cater. This isn't meant to be a character assasination... it is simply the truth. I do not think I could have counted on him to be there for me, if the tables were turned.

But, that really doesn't even matter, does it? Because what it is is what it is. This is the hand I've been dealt. Cliche after cliche after cliche.

Thanks for all your good thoughts.
"Courage is the art of being the only one who knows you are scared to death"


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 8/10/2008 8:26 AM (GMT -7)   
Scared to death is right yeah .  We moved to California to be close to the hospital, I don't know my way around here and have to do all the driving, we have to be in San Francisco for three appointments this month and are going to take the rapid transit, his first appointment is a 7:00 a.m. Geez I am a nervous wreck that we will be late, the hospital was suppose to send some lab work requests and I didnt receive them.  My husband is like a lost little boy and no help at all!  Everyone thinks I am so strong, what a laugh,
 
Judith

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/10/2008 10:08 AM (GMT -7)   
You are all so strong.  Scared as hell...yes.... but still so strong.  Your are still doing what needs to be done even when your scared.  If that's not strong I don't know what the heck is. 
 
 To me strength is not measured by muscle mass.   It's measured by making through the bumpy road of life in one piece. 
It's climbing to the top of the hill to only see a bunch more that need to be climbed and going on anyways.  It's falling down and picking yourself up and starting all over again.
 
One of my biggest fears was driving in San Francisco. To me that was like climbing Mt Everest.   But each time I did it... got a little easier and easier.   And most of the fears that each of you have will get easier every time you face them and conquer them. 
 
Do I want to go back to San Francisco yet?   OHHH NOOOO.  It's not the driving now.....it's the memories that are too hard to face yet.   When I can go back to Frisco then I know I'm done going though this bereavement stuff.
 
I keep telling all you caregivers to take a little time for yourself and recharge your batteries.  You're thinking .........yeah right...when?   I know how precious time becomes when you have a thousand and one things to get done.  When you are so worried beyond belief about your S/O how in the heck are you suppose to find the time for yourself?  When you are just too plain tired and exhausted all the time.  Little chunks at a time is how.   Sure it's not going to be like before the disease too control of your life but you can find it.  Just minutes of respite will help believe me.
Please find some help if you can.  Family or friends to keep an eye on your loved one while you ..go for a walk, read a magazine, take a long warm bubble bath.
 
The same thing goes for all the patients too.  You also need to clear your mind and do something nice for yourself too. Sit out in the sun and listen to nature.  Give your pet some attention. That always makes me feel better.
   
And do keep coming back here.   You know that we understand and really care about what you and your loved one are going though.  
Lot's of thoughts and prayers for all my HealingWell friends....... :-)
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.


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 8/10/2008 10:39 AM (GMT -7)   

Pink Grandma you are such an inspiration and know when to say the right things cool , thanks for being there.  I don't give myself any credit and sometimes just feel like jumping in my car and driving somewhere far away because this is just no way to live but your right somehow you just get through.  You mentioned taking some time with your pet and that is another worry I have, mine is my little therapy pup and I worry that I might not be able to keep her, she will be going to the kennel while were in the city but don't have a clue what I'm going to do with her when hubby is in the hospital for a month!

 

Judith

 

 

 


La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 8/10/2008 11:39 AM (GMT -7)   
Judith,

You know I am crazy for the dogs, too. (I have two) and you are right... they are a BIG worry. A BIG comfort - in fact I am going to take PG's advice today and go for a walk with the big one - a long long long walk.

But, when 'the time comes' what are we going to do with them? I have a dog sitter. And guess what? (This is so typical of my life). Her DREAM has always been to go live in France.

Well.... she's going. Now. When I need her the most.

What am I going to do with them? I will not give them up. And my neighbors are not 'dog people'. In fact, in this neighborhood, my neighbors are not 'people people'. I grew up in Wisconsin where folks next door and down the road would help you and knew your problems. These people in this neighborhood - forget about it. They'd rather turn their head away (which they do) than say a friendly "hi". Ugh.

But, things always work out. There are pet owners who survived Hurricane Katrina. So, I guess we'll figure out at way to survive this.

PS - Judith - regarding driving in SF. SF is where I met hubby. He had just graduated law school and I was out there to be a hippie. Which I was successful at. Anyway, I bought my 2nd car there, after the 1st car blew up. It was a VW micro bus. Guess what else? IT WAS A STICK SHIFT!!!!!!!!!!!!!!!

Holy cow! Learning to drive that stick shift in SF was one of the hardest, scariest things I 've ever done.

Wait a minute. In retrospect... compared to what I've been thru since, it wasnt that bad!!

That's the way you should look at driving in SF. In the 'big picture' it's only a small worry.

Love to you all. You have all picked me up a little today.

Thanks for that!
"Courage is the art of being the only one who knows you are scared to death"


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/10/2008 1:12 PM (GMT -7)   

Hello, All.  All this talk of strength reminds me of the saying about courage:  "Courage is being scared to death, but doing it anyway."  I am often told how strong I am.  I don't see myself that way at all.  I just do what I have to do.  I love a challenge, and I'm also pretty stubborn.  Tell me I can't do something, and I will try to prove you wrong.  When you have one challenge after another, though, it can really wear you/me down.  That's why it's so important for both patients and caregivers to find little pieces of time to be kind to their selves.

Grooming my animals and petting them always calms me down and gets my mind off my problems.  My cats are elderly (18) and are becoming a lot to handle.  But it's worth it, as long as they aren't suffering...in which case, I will need to let go. 

As many of you know, I've had multiple surgeries over the past 5 years, with hospitalizations of at least 3 days and up to 7 wks.!  There was also that 5 days in NYC in April.  I have always found a neighbor to feed and water my cats daily, scoop the poop, etc., as these are totally indoor cats.  Now all my friends and acquaintances here have either moved away or become unavailable.  In thinking about returning to NYC next month for a visit with my best friend, I hadn't even thought about the cat care!  I really don't know who I could ask and I certainly prefer to keep them here at home than to put them in a kennel.  I know that there are people who are "pet sitters."  This usually means just dropping in and feeding them; walking if their charges are dogs, etc.  These people tend to be a bit pricey (compared to what I've been paying neighbors), but if there is no other alternative, I guess I could do that.  Since I'm not going out of town next month, I don't have to be concerned with it right now, but I'm sure I will need to find a solution at some point.

La Bunna, check your local yellow pages or do a search online for pet sitters and you might just come up with someone who can help you out.

Hugs to all,

Connie


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 8/10/2008 7:43 PM (GMT -7)   
Hello All, This must be the week for bad news and melt downs. Recently Doug had another morning he wouldnt wake up for me, so here we go with 911, off to the ER he spent 3 days on a vent before he woke up. They had to do lactulose enemas every 4 hrs, once he woke up they tranfered him to Boston at which point his MELD was 25, discharged 10 days later with a meld of 13! During all this I only missed 1 day of work yet was called to the office and told I have 30 days to put things in order at home because if this continues it could cost me my job. HHHHMMMMM what do you think the chances are life will be "IN ORDER" with in 30 days. My life has NEVER been in order!! I really couldnt say a word when that bomb was dropped, all I coulod think about was all the times I have spent in the ER and left to go to work on time while he was heading north in an ambulance.... duhhh. How are we to have balance between work, taking care of a loved one, take care of yourself and feel like a med student. My daughter says I know way to much! I spent 2 days crying even while helping my customers...... what do people do to survive this. I am at a loss now........
Sue
When I started counting my blessings my whole world turned around.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/10/2008 7:59 PM (GMT -7)   
Hello Sue,  have you checked into FMLA?  If you work at a fairly large company you may qualify for it.  It is designed to help people save their jobs if they or they have loved ones cronically sick.   I don't remember who's been told about it and who hasn't.   It saved my job. 
 
Do they know how sick he is?   If so ask them if they prefer that you just leave him at home to die while you tend to their customers.   mad    No don't do that but I sure would like to know if it was a large chain.   I definitely would boycott them.   I might even picket them. 
 
The ones that made the 30 day decision need a little bad carma to come their way so that they learn some compassion.  skull
 
Lot's of thoughts and prayers for you and some not so good thoughts about your employer.  
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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/10/2008 8:54 PM (GMT -7)   

{{{{{{{{Sue}}}}}}}}}  I agree with everything Pink Grandma said above.  Does your supervisor know just what is going on with Doug?  You must have been thinking it was the end when he remained comatose so long!

I know that most companies (especially the large ones) just want a body in the chair and really don't care what is going on with the employee at home.  My best friend here got fired because they thought she took too much time off to tend to her husband, who nearly died from a contaminated nutritional supplement.  It affected him both mentally and physically permanently, and he ended up on SSD.

You will be in my thoughts and prayers tonight.

Hugs,

Connie


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 8/11/2008 6:29 AM (GMT -7)   
Hi PG, I did take fmla for as long as I could afford. But you know this disease as well as I do. The roller coaster continues till a Transplant or the thing we dont like to think about. I did tell my immediate boss that I was sorry it cant be resolved in thirty days "CAUSE HE WONT BE BETTER BY THEN AND I AM NOT LETTING HIM DIE" so now I am going to see HR......our company always talks about giving back.... helping our communities well I am the community. I think the new GM just doesnt understand the HR rules and process. We get points whenever late or have an un excused absence and to blow my own horn I HAVE NONE and when you get 10 you can be fired(10 in a year) I am just so ............. ticked off and a little scared ... well no alot scared ........ me doug and my 18lb cat cant live in a VW Bug....... I have been homeless before but not with Doug its tough. I guess i am still just in a panic mode.
Sue
When I started counting my blessings my whole world turned around.


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 8/11/2008 9:44 AM (GMT -7)   
The next time I feel sorry for myself I'm going to come back and read your posts redface , thank goodness I don't have to worry about a employer right now, I retired in 04 and my husband has been ill since 06 so my only job right now is taking care of him. Hug's to you all,
 
 
Judith

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/11/2008 6:14 PM (GMT -7)   

Sue, my feeble brain can't recall--is Doug on SSI or SSD?  Is he on your employer medical insurance or on Medicare or Medicaid?  Are you working full time?  If there is income, other than from your job, it might be to your and Doug's benefit to quit.  You might then be eligible for food stamps and other benefits.  Or you could get a part-time job elsewhere.  However, if your income is the only money coming into the household now, that can be extremely difficult.

I have been as close to homeless as one can be, without actually being on the street.  This was decades ago, during my drinking days.  So even though the reason is different, just wanted you to know I've "been there, done that" and understand the rising panic when you think you will not have a roof over your head.

Big hugs,

Connie


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 8/12/2008 7:01 AM (GMT -7)   
Hi Sue, I can't believe your employers are being this way. It makes me feel so outraged. I wish I could write a letter of complaint to someone. I am continuing to pray for you.
Butterflythree
 
There is always hope!

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