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Posted 11/22/2012 12:47 AM (GMT 0)
Angie and Creative Soul,
I hope you are having a peaceful day...and finding whatever sliver of happiness that you can.

All the other caregivers---wishing you all a peaceful Thanksgiving tomorrow too.

Emma
Posted 11/22/2012 3:19 AM (GMT 0)
Angie & Creative Soul... I'm sorry that I haven't come over here... sooner... I have walked in our shoes... and it is difficult.. and other the other side of your loved one's passing it's not easy either... I learned to take each moment ... moment by moment... I learned to stop the world when I was with Mike... he didn't want hospice... and said if he died on the floor ... he didn't care... we were able to keep him home until the last 24 hours of his life... it's  tough one that last year... from doctor to doctor ... then they say... he has six months.. and.. that hits a person... like a speeding train... and I remember sitting on Mike's bed one day and telling him I don't know how I will go one without you... he said you will.... and I said to him... without thinking that's easy for you to say you won't be here... and then we sat and cried together...and now as the second holiday season approaches without him... I have survived but ... I miss him every day.. and every day I do get better... my daughter grieves him deeply... but we have survived... but those moments in the last year of Mike's life were some of the toughest of my life... my thoughts and prayers are with you ladies.. and your men.. Happy Thanksgiving...  Sandia
Posted Yesterday 6:38 PM (GMT 0)
Hello,
I'm in need of some advice, as I've recently been told my mom only has 10% liver function.

She hasn't walked since the end of July and was recently hospitalized for complications from her cirrhosis - weighed about 75lbs, dehydrated, sores all over her body, incompetince issues, slurred speech, confusion, can't write, can't walk, etc... also had pneummonia. All levels were off and her sodium was down to 112.

Believe it or not she's gotten a lot better in just 1 week. She's getting ready to be discharged from the hospital and will move on to a SNF.

The doc says her liver won't ever go any higher than 10%, but that if she stops drinking, can still live on 10%.

Any adivce?????? What's next for her??? I don't think it's good, but I'm at a loss.
Posted Yesterday 6:50 PM (GMT 0)
Aborg,
So sorry that your mom is sick with liver disease. NO ALCOHOL is the best thing she can do for her health. I am going to read your other post and write more there.
Take care. Post here often.
Emma
Posted Yesterday 7:26 PM (GMT 0)
Some folks with alcoholic liver disease DO rebound with abstanace...and a healthy diet, exercise, lots of rest, reduced stress.

I hope she tries.

I hope A. Ziffle responds to your post. He had wasted away to almost nothing and is doing quite well years later!

I'm sorry, Aborg!

Hugs,

MamaLama
Posted Today 1:54 PM (GMT 0)
Aborg,

  So Sorry your Mom is so ill.  Wecome to HW forum.  Come here often to post, vent, ask questions or just for companionship.  There are folks who have been through almost everything and are willing to share information, support and answer questions.  They have been very helpful for me.

  I think you will be surprised at how much better your Mom could get, WITHOUT alcohol.  My hubby was on death's door from this disease 2 years ago, was given a terminal diagnosis and he has still lived another 2 years (he doesn't drink any alcohol and it was not an issue in this disease for him, the hep C was).

  Just so you know...and she knows...it is possible to live with this disease.  It is really hard on the caregiver, but possible for your loved one to live with limited liver function.

  Am working hard to accept that we have now moved on to now having Hospice come into our home.  I am struggling with accepting help...some folks in the community have offered phone cards and brought us food.  It is really hard to accept help...although I know I have said on this site how hard it is to do all myself.   So, I am having to swallow pride and accept help, try and keep my anger under control (I am angry that this disease has devastated our lives) and keep moving forward one step at a time. 

  Hubby is now throwing up numerous times a day and finds it now hard to keep the lactalose down.  But since he now is on Do Not Rescesitate orders, we decided to not get meds for the vomiting.  He takes some peppermint candies, which helps some.  He is naturally losing weight.  We aren't fighting that ... just letting things take it's natural course.  But is hard to watch him so ill, but I am becoming more used to it (or just numb to it).

  Hard to be interested in the Holiday Season right now.  We take it one hour at a time.  I am not doing anything for the Holiday this year, am just keeping things simple.  Have sold a lot of our things to get through this time, which is okay, I guess.  Have given away some of my horses, as who knows how long this dying process will take.  That was very hard and I am still devastated about it.  But....this ESLD is life changing...and not in a good way, for either of us. It is a rough ride, indeed.  Thinking of all of you out there struggling with this disease, both ill folks and caregivers.

Angie1953

 

Posted Today 3:56 PM (GMT 0)
Angie,
So sorry that everything is so hard for you now. Maybe someday there will be a time where you can take comfort in these days. That you have been so steadfast for your hubby, and are there to help him. True love...what all of us want in life...to have our best friend and the one we love most by our side until the end.

Another thought on accepting help from others. It may make it easier to accept the gifts of meals and phone cards when you remember how good it makes the giver feel. There is always joy on the part of the giver.

Thinking about you today. Sending you positive thoughts of strength.

Emma
Posted 11/30/2012 12:35 AM (GMT 0)
Sandia: thank you so much for your words and prayers. I'm so sorry your Mike has passed on and how hard this time of year is for you and your daughter. Your experiences are helpful to those of us who are going through similar times.

Angie: I'm so sorry that your husband is sicker. I know seeing him diminish like this must be horrible. It's amazing how much strength we actually do have in us, even when we think we have nothing left. Then there comes another day, another challenge and we rise to the occasion. You have my prayers for more peace and strength.

My husband seems to be sleeping more, and falling more. He is very resistant to change and will not comply with things that might help him be safer (like use a walker). I try to get as much lactulose down him (hard when he's sleeping so much) and he takes his usual Xifaxan. But seems like we can't keep on top of his HE symptoms. It's hard for him to complete sentences, and he often does not make sensible choices. It's hard to know whether to let the process take its course, or to keep waking him up to take more lactulose when he is obviously so out of it. He also has a DNR. Today he told me that he had chest pains last night which kept him awake. Very scarey, but also a symptom of his problems.

The last of my kids/grandkids are leaving tomorrow, and then we will have three quiet days together before I have to go back to work next week. I honestly don't know how he is going to be properly looked after, even with hospice visiting once a day, when I go back to work. He forgets to eat anything and cannot be trusted to properly dose his pain meds, even when I leave them separated into little baggies with the proper dose times on them. Hospice says we'll monitor everything and cross that bridge when we come to it. We'll see.
Pam
Posted 11/30/2012 3:00 PM (GMT 0)
Pam,
So sorry your hubby is doing so poorly. We have gone through that uncontrollable HE, where he sleeps 22 hrs a day. We have done it both ways, in a nursing home, where they woke him up for the meds and lactalose and at home where I didn't, I usually waited for him to wake up. Worked better for us, to let him sleep and do it when he did wake up. But it is a chore, and I was only working part time.

I have much the same problems as you, in that I must start working full time and don't know how he will be able to manage by himself...hospice here also says, once a day visits by them will help monitor him. I'm hoping to find a night job, so I will be there in the daytime. Can't really afford to pay someone to come in and take care of him.

Some of my husband's vomiting is stress I think. He hears about the financial hardships and I get so distraught over having to get rid of my horses, and he knows it is because of him. It is very difficult for me to hear people say his suffering is "God's Plan," and "we just don't understand God's big picture." It is easier for him, if I just perform the caretaking duties and not discuss anything with him, because there is really no good news for me to share with him. (And...I am still so angry that we are losing everything because he has this stinking disease.)

He is so disappointed that none of his family nor either of his daughters have sent a single phone card, so they can talk to him...I am very disappointed in all of them, too. It seems like such a little thing to ask of them.

Well, I had a questionable mammogram 2 weeks ago, and have to go in today for a follow up one and other tests, which is a very scary thought. (Our state has a program whereby caregivers with little income, can get testing and care if a problem is discovered.) I think it is to keep us up and running and able to continue providing the care to these older guys to save the State the money that it would cost to put them in a nursing home. (I know, I shouldn't look a gift horse in the mouth.)
Not looking forward to tests, but am trying to keep my health, so I can continue to do this. As I look around, the women that have been caretaking, about the only way they get a break is to get sick themselves. :( That is sad, but that's what I observe in our area.
Well, need to go get ready for testing. Hope all have a tolerable day.
Angie1953
Posted 11/30/2012 3:31 PM (GMT 0)
Angie,

Holding best thoughts for your mamo follow up today.  Fortunately, they have great interventions for breast cancer if this turns out to be an issue for you. 

Hugs,

Carol

Posted 12/5/2012 6:32 PM (GMT 0)
Do you ever feel like you are going to lose your own mind ? That's how I feel today ! First I have Mark with ESLD and then my Grandma and now my gram is in liver failure,the Drs said it is shutting down. I just want to sit here and cry,knowing that this will be what Mark will be like sooner or later ! I think when someone has ESLD and you don't know that person in real life,it doesn't hit so close to home with you.But when another family member gets it and then gets sick so fast,it just scares the hell out of me ! The Drs always say Mark can get real sick real fast,and as long as he stays like he is I think I can pretend that he wont get any worse,but now reality has slapped me right in the face and hard ! So sorry for my rambling on but I cant do it in front of Mark,he is already scared enough !
Posted 12/5/2012 11:27 PM (GMT 0)
NEH, I responded to another post of yours on this subject. Mark is much younger and shouldn't be compared with your grandma. Also, each individual is different.

Hugs,
Connie
Posted 12/6/2012 12:36 AM (GMT 0)
What scares me is knowing that the liver can go that fast !
Posted 12/6/2012 1:21 AM (GMT 0)
When the liver becomes decompensated, it can crash at any time. Fortunately, my liver never decompensated and so I never had HE or other problems connected with that. However, while waiting for a new liver, I knew at any time things could go downhill very swiftly.

Hugs,
Connie
Posted 12/6/2012 2:38 AM (GMT 0)
I had ESLD and dealt with it for 4 years. Always sick, but not sick enough for a transplant. Then, within a couple of weeks I went further downhill and received a transplant. I had been sick for so long, I didn't notice the difference.
Posted 12/6/2012 1:37 PM (GMT 0)
Marks liver is decompensated,stage 4,he pretty much has every symptom that you can get I think except for acities ,when he was still drinking heavy,a 30 pack of beer a day plus a pint of vodka his feet would swell up like balloons,that has never happened since he quit drinking ! But he has HE,spider veins all over his chest,man "boobs", the palms of his hands and his fingers are bright,bright red,always,diabetic because of his pancreas not working properly,portal hypertension,enlarged spleen,low platelets,sleeps most of the time and when he is awake he is like a zombie,yet his meld is only a 7,So we know this can change at anytime,its just so darn scary to both of us ! They wont treat him for the Hep C,he is geno 1a,the dr said he would never survive the treatment ! So do we just sit and wait for the ball to drop ? My life is on hold,and whats harder is having my 11 yr old daughter watch him get sicker and sicker,her own dad passed away when she was only 4 from heart disease.I just wish I could go to sleep and wake up and it was all a bad dream !
Posted 12/6/2012 2:05 PM (GMT 0)
NEH,

My heart goes out to you. I can't believe his MELD continues to hold in there. This mostly means his kidneys are working good as so much of the score depends on renal health.

Here are some extra hugs to get through another day.

OOOOOOOOOOOOOOOOOOOOOOOOOO

Carol
Posted 12/6/2012 4:06 PM (GMT 0)
NEH and Angie ... I don't usually post here, but my heart goes out to both of you. I am so touched by the huge battle before both of you and your strength in doing so. My husband and I are selling our remote mountain home to go back to suburbia where my family lives. We see that we may need their help, and my husband has health issues himself. He's putting a real positive spin on it (another "adventure") but I can tell he's heartbroken and scared ... and he does NOT scare easily.

If you all weren't so bravely honest, we wouldn't know what to expect. Thank you seems pretty inadequate but THANK YOU for your posts.

I hope each of you get time for yourselves, and some rest from your troubles this holiday season. We're thinking of you.
Posted 12/6/2012 6:07 PM (GMT 0)
Thank you so much,I got the call this morning on my gram that i was waiting for,her kidneys have shut down,my daughter said her belly is Huge! She is refusing all treatment of any kind,even having her belly drained.There is a family meeting tomorrow morning with my mom,her sisters and my Gram and The Drs,I am assuming that she will be placed in hospice care til the end.I am so sad,but at the same time,I dont want her to suffer,I am so lucky to be 53 yrs old and still have a Gram ! Mark has a Dr appt in the morning,I always get stressed out before he goes,he will have his blood work done and of course that makes me a wreck waiting for his results ! Deb,I am so sorry that you have to sell your home,just try to keep those happy memories inside of you,they will always be there ! Angie,my heart goes out to you also,a caregivers job is never ending at times,even when I get sick,I cant be sick,I think you understand what I mean by that !I hope you all have a better day !
Posted 12/6/2012 8:53 PM (GMT 0)
NEH, it sounds like your gram has made her decision. Hospice will make sure she doesn't suffer.

As far as Mark's labs, there's no point in being anxious. It is what it is and there's very little you can do about it. I've had hundreds of labs by now. In the beginning, I was also nervous. But after awhile, it just became a regular part of my life. If glucose is too high, I can watch the sugar intake. If sodium is higher than I'd like, I watch the amount of salt I'm ingesting. But there's not a lot I can do about liver enzymes. And they fluctuate a lot. One week they may be high but not sky-high, and the next there will be a sharp increase.

Labs aren't everything. For a long time, my labs didn't correlate with how I felt. The labs weren't bad, but I felt awful. Since transplant, labs are more on track with how I'm feeling. What docs really look for is a pattern. If a certain lab keeps rising each week, that's an indication that a med or diet needs to be changed. Likewise with electrolytes being too low.

I've found that excessive worrying and anxiety is wasted energy when there is nothing I can do to change things (also true for family issues, etc.) If there is something I can change, the docs will let me know.

One of the things I like about Mayo is that I can go for labs at 8 and get home by 9 and find the results of my labs (except for Prograf) are already available online. Prograf results take a few hours, but I'll have them later in the day. You might want to find out if he can get results online. Of course, you would have to set it up for him and be the one to access the site. At Mayo, I had to fill out a form and then present my photo I.D. for them to activate my online acct.

Hugs,
Connie
Posted 12/6/2012 9:47 PM (GMT 0)
NEH,

  So sorry to read about your gram and am sending our best for a peaceful exit, if that is where this is headed for her.  You are right that you are lucky to be 53 and still have your gram.  I would have given anything for another 20 years with mine, she was such an amazing woman.  Yours sounds the same.

   Wishing for good results for Mark tomorrow.  I know the waiting is hard. 

   I just found out yesterday that my mammogram results were "probably not cancer"...that wasn't the most reassuring letter, but better than it could have been.  They suggest another mammo before the annual one, so I'm thinking every 6 months. 

   Hospice is becoming more helpful...well, especially the volunteers.  They are priceless and they do it for no pay and use their own funds "out of pocket."  They are sweeties and I look forward to seeing them.

   Hubby is now loosing weight..about 3 pounds a week.  Doesn't seem to eat much, and I don't push him about it.  Hospice got him some meds for the vomiting.  He does still walks outside and luckily it's not too cold.  He is however, up and around every hour on the hour all night.  He gets up and makes food, takes the dog out, walks out to the horse pen, watches movies, reads etc.  At first I could sleep through it and now I can't, so I'm waking up every hour all night.  I noticed that the last month people come up and say, "you look so tired."  ....and I think, "darn, I even put on make up and they still think I look tired.  Not much else I can do about it."

  I sleep in a sleeping bag on the living room floor, so I can tell when hubby is up and about and if he goes outside.  The poor dog is so tired of going outside at night every hour "to potty", that when hubby calls him to go out, dog looks at me like "Oh, no..not again...Tell him I don't have to go."   I look at dog and think "Sorry, dog, the first 3 weeks I tried to tell him you don't have to pee every hour all night...but now I'm going to just close my eyes and you will have to go out, lift your leg and pretend to pee."  .....and he does!!

  This evening I am going to help the local Kiwanis distribute free used books to families that come to the pancake supper after the Christmas Light parade.  That sound be a nice break. Tomorrow night garden club member will pick me up and take me to the garden club Christmas dinner.  It is really hard for me to get in the "spirit" of the season.  I enjoy the Solstice, so will plan a big bonfire for that evening.  I have been saving up wood for it. (Hope it's not windy that day.)

 

   One of my friends suggested lavender scent for destressing, so she is going to send me some via mail.  Hope it works.  Well, am thinking of all you caregivers and ill loved ones and hope the night goes softly for you.

Angie1953 

Posted 12/6/2012 11:21 PM (GMT 0)
Angie-
Hoping the night goes softly for you too.

The thought of the dog pretending to pee made me smile. My little dog fakes going potty too...she doesn't like going out first thing in the morning...too damp and cold...plus she just wants to EAT! So she goes outside and gets out of my sight, I go to fill her food bowl...then she is right there. Her paws aren't wet, so I know she never got down to the grass to do her business. Dogs are so funny.

Sorry that you are so exhausted. You probably feel better that you know what hubby is up too. Also good to hear that your mammo came back OK. A follow up in 6 months seems like the right thing to do.

NEH, Pam and everyone else, wishing you a night that goes softly as Angie has suggested.

Emma
Posted 12/7/2012 12:51 AM (GMT 0)
just stumbled on this forum and signed up. my beautiful sister has hep c since early 70,s. she has been ok through the years but drank a lot of alcohol . her plateletts have been chonically low for years though. she is 59yo now.
last march she started vomiting up blood. she was in the hospital on and off for a month. meld score was up to 32 but has been around 17 for a long while now. she has chronically low plateletts around 39000 and hgb just above 8. she is freezing cold all the time, very easily fatigued, and cannot sleep at night [ she says thats the worst thing]. she is on a transplant list but is really very discouraged. she just wants it to be over. she has not had any alcohol in about a year and a half now. how long can she go on this way?
Posted 12/7/2012 2:55 AM (GMT 0)
sistersong,
What transplant clinic is she seeing listed at? I was 59 when I received a transplant, after waiting with a low MELD score 13-17 for 4 years. Then within a couple of weeks, my score jumped 6 points and I got "the call." Don't give up hope for her. And, don't let her give up.
Posted 12/7/2012 2:56 AM (GMT 0)
Hello, Sistersong, and welcome to the forum. I am sorry that your sister is ill with liver disease. It may be best to copy and paste your post into a new thread (click on New Topic instead of Reply) to get more input. You are in the right place for support, but more people will be able to give input if you start your own thread.

I have hep C which was contracted in the late 60s. It was diagnosed in '93. I tried treatment, but couldn't tolerate it and was taken off. I had been sober in AA for 7 yrs. when I was diagnosed, and have continued to remain sober for many years. I know that acted in my favor. So it's great that your sister stopped drinking. She otherwise may not be eligible for transplant. I did okay for years, though I had to cut work to P/T only. Then suddenly I was diagnosed with liver cancer--and everything changed.

BTW, having nights and days mixed up occurs with most liver patients. I have no idea why.

Where is your sister being seen? Different centers differ in what the MELD score needs to be to transplant. Are they accepting her self-professed sobriety or do they want to see proof through a support group like AA?

Hugs,
Connie
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