ESLD confused?

[fdturley]

Hello everyone,

First thank you for taking the time to read my post.  I'm just trying to understand what is happening with my MIL.  She is a 68 yr old female with CHF, Diabetes, Chronic back pain from nerve damage, and now esld we think from the years of pain meds.  She was complaining of symptoms for 1.5 years I know and her primary care doctor did not find the liver disease.  Now we are told because of her other health issues and the advanced stage of her ld there is nothing that can be done.  She has ascites, edema, stomach pain.  She was sent home on hospice for CHF with palliative care only.  She is not being treated with lactulose because they said it was not helping.  Now she has been told they will not do anymore drains because the fluid will come back quicker.  I don't understand why these things are being with held from her since they are comfort measures.  Thanks for reading this my MIL is very special to me.  She is the only grandparent my kids have left and they are still very young.  Maybe I am just having trouble accepting that the end us near.

Thanks

Denise

[HectorSF]

I am very sorry to hear about your mother in law's multiple health conditions and her need for hospice care. It must be very difficult for you.

Sadly in a person with ESLD as the liver fails the complications caused by the failing liver; ascites, hepatic encephalopathy and the other complications can become"refractory". Meaning the complication does not respond to treatment and recurs continually. When this happens only liver transplantation can reverse the situation. Which unfortunately is not an option for her.

I am very sorry your family is dealing with such a sad and difficult situation.
My best to you and your family.
Hector

[fdturley]

Thank you for responding.  I know you can't tell me what exactly to expect but. I guess I'm wondering if you can tell me how quickly she is going to decline.  The last time she had paracentesis her breathing and bp were being effected.  Lower bp, sleeping alot, in pain when she was awake, and o2 level decreased.  Does this mean it will be like this again in a month but this time she will continue to get worse until one of the complications causes her death.  I am reach out for help her because I live 4 hours awake and can not go to the dr with her.  My bil goes and he edits because he believes she just needs to reduce pain meds to magically fix everything.  I know that's not the case and I realize that meds are the only thing helping with her pain.  Thanks again for any help.

[HectorSF]

No one, not even a doctor can predict what will happen for any individual patient as we are all individuals. What one person can survive another person can't. There can be many ups and downs along the way. But there are signs of coming death when it is very close and her medical providers who are monitoring her daily will know when this occurs.

People who are at the end of life with liver disease, which is the only disease I have experience with and can speak off, can have a change in their health status literally at any time. As you mentioned any complication or infection can sadly be fatal for someone so ill.

Your brother in law is probably in shock and denial which is a totally normal human reaction to the situation. We all want to believe that everything will be alright somehow.

Since you live so far away I understand your ability to help is limited. I would do what you can under the circumstances. Maybe you can provide support to other family members such as your bil during this difficult time? Just listening to others can help them to deal with this terrible situation. You sound like a caring person and I'm sure anything you can do to help those you can would be appreciated.

Hector

[fdturley]

We visit every other weekend when my husband is off.  I am also planning to go and stay the summer.  This is the best I can do right now.  I just hate that she is really suffering and there is really nothing I can do.  I research and read and nothing give me much hope.  I'm a nerd at heart and I am pretty much obsessed right not with looking for answers when intellectually I know there are no clear cut answers.  We lived nearby until 6 months ago and I guess it's just hard to accept that I'm so limited in what I can do.  Thanks again.

[HectorSF]

It sounds to me you are doing everything you practically can. I think if you keep doing what you can and in time you will know that you did what you humanly could. That is a lot more than it may appear at first.

Everything we can do to be there for others who are suffering, even when we can't change the situation, makes this world a little better place to live in for all of us.

Thank you for caring and helping.
Hector

[hepcandme]

I am so sorry to hear of your mother-in-law's extremely serious health issues.

Can you befriend someone who is part of her hospice team? Even though you are some distance away, hospice will probably have someone closer to you to provide support

Hospice workers are trained to deal with end of life issues and, in my experience, they are there for the family and support group as well as the patient

I am not a doctor but in my opinion, your mother-in-law should be made as comfortable as possible, if she is in pain, she should receive pain relieving drugs and if you think that she would prefer to be at home, you should do everything you can to help make that happen

She is very fortunate to have someone who is so loving and caring as you

Please remember to take care of yourself as well during this very difficult time

[drrubesh]

Sorry for your grandma.. palliative care remains the choic of treatment

[rexx73]

May I ask why liver transplant is not an option?

[fdturley]

Thanks everyone.  My MIL is being cared for at home by the family and hospice.  This past week she was able to get out of the house some but the more fluid builds up the more pain and nausea she has.  Yesterday she took more of her pain meds than she has need and slept most of the day.  When she was not sleeping she was in pain.  I pray for everyone in this community this is truly a viscous disease.  she discussed funeral arrangements yesterday with my husband.  This is the first time she has done this.  I truly think she is giving up since the Dr told her no more paracentesis.  Before she would refuse the break through pain meds because she was afraid of doing more damage.  It's truly awful so see someone you love go though this.  If yall don't mind I will continue to post updates her maybe yall can give me some incites to what to expect.  

Thanks again

Denise

[fdturley]

Liver transplant is not an option because she Congestive Heart Failure, demonized kidney function, and diabetes.  All those things combined with her age and past history of ARDS (acute respiratory distress syndrome) make her not eligible for transplant.  They did not even do a biopsy because they said she might not survive it. I hope I explained it correctly.

Denise

[fdturley]

That sold say deminished kidney function not demonized sorry.

[hepcandme]

I found this lovely piece called "holding a place" that I hope will give you some insight and provide you some comfort

I found it quite moving but also quite practical. Death is the one thing that we will all experience but most of us have so little experience dealing with it. It's OK not to know what to do, move slow, breathe, take it all in.

Hold a space for your loved one and let other hold a space for you

http://heatherplett.com/2015/03/hold-space/

Kind wishes

~ Linda

[Sarah1949]

My mother died of liver cancer and the one thing I think is imperative is to allow the dying person to make their own decisions as long as it is possible. My mother opted to have morphine available as needed and we totally supported her on having this option. It's really sad to see family try and take this away from a dying person and so I'm glad to hear you are letting her take the pain pills as she sees fit. It's so hard not having control during this process and I empathize with you. Take care.

[Livelife777]

Im so very sorry that your MIL is going thru this.  Unfortunately I also lost a family member to Cirrhosis and Liver Cancer 2 weeks ago. I also asked the same question as you as to why they wouldn't drain the fluid to make him more comfortable. Hospice noted that it would be senseless as it would fill up again and bring no relief.
Denise I was with him when he passed and honestly it was very peaceful in the end.  They were giving him morphine every hour or two, and there was no indication of any stress or pain.  I asked about the morphine on the  respitory system and it actually opens up their airways making it easier to breathe.  In that regard the pain meds were a welcome retreat.
Hospice does know when the time is near.  Hopefully they can give you an indication as to when you need to be there.  Again, I'm so very sorry that your family is faced with such a horrendous disease.  My family member just turned 60, and way to young as is your MIL.
We are here for you please know that.
......Kim

[pugdaddy]

FD, how are things going with your MIL?  You're getting great advice here - esp regarding pain control.  It is unconscionable to withhold morphine (or other strong pain relief) from a terminally ill person such as your MIL.  Her other family members do NOT have any right to make such a decision for her.  If you suspect that she is suffering needlessly due to their stupidity, then you should contact her doctor - and/or the hospice management - and be sure that she has access to whatever pain control she wants and needs.  And that, FD, may be the most helpful and compassionate action that you can take to assist your MIL!!  Bless you -

[fdturley]

My MIL is now getting her meds as needed.  The dr explained the need better I think to my BIL.  I have just found out she has not eaten anything for 3 days just ice.  I'm very worried because we can not go back until Thursday of next week.  I hate being so far away and not getting info first hand.  Can you tell me should I be worried she won't make it until then?

[hepcandme]

Not eating is not a good sign. Is she awake and coherent?

You might want to ask someone on her hospice team to put you on their phone tree and try to have a candid conversation with them sooner rather than later

One can go quite awhile without eating btw

Let us know if there is anything we can do

Sending calming and caring thoughts your way

~ Linda

[Livelife777]

Hepcandme is right.  Usually not eating is not a good indication as this may mean her body may be beginning to shut down.  On the other hand, she may be depressed and refusing to eat which can be a normal response to what she is going thru.
The Hospice nurse would be the one to ask.  They are the ones whom day after day are with the patients when they pass. Honestly, they can give you answers.
I do hope that you are able to spend time with your MIL. It's so evident that she is a very special women in your life and its important that you are able to see her.  Please again know that we do care and will be here for you should you need a friend.  This must be a very difficult time for all and such a heart breaking time in your life. Please be kind to yourself as well, as I'm sure that is what she would want you to do.
Warm wishes
.....Kim

[fdturley]

She is awake and coherent.  My husband spoke to her yesterday and she said eating makes her nauseated and makes her stomach burn. My husband talked to her about getting the nurse to change her medicines.  Right now she is on methadone 3 times daily with break through meds in between as needed.  My husband has no more vacation time so we can't go until Monday at the earliest.  I feel better about the situation since my husband spoke to her.  Thank you everyone for your responses.  This week is spring break for my kids so either way we plan to go for an extended visit.

Denise

[hepcandme]

Oh, good. I am glad she is feeling a bit better. The methadone itself is probably making her nauseous - a side effect of opiates

Just as you did with the pain meds, just let her eat Whatever sounds good and she thinks she can keep down. A vanilla milkshake? Pudding? Yogurt? Mashed potatoes and gravy?

I'm happy that you will see her on Monday too. It's difficult when you are far away but now you'll get to spend some quality time with her

And, not to sound like a broken record, try to get to know the hospice staff. The are there for you and they are very good at what they do

Take care

Thinking of you and sending positive thoughts your way

~ Linda

[fdturley]

Just a quick update.  We did go and spend spring break week with my MIL.  She was able to get out of the house and go shopping the first day.  After that she did not feel well enough to go out so we stayed home with her.  She ate well while I was there.  She has lost down to 145 lbs and she is a tall woman, about 5ft 9 in.  She started out weighting about 200 lbs.  Quick question anyone that has dealt with hospice.  Why would they only prescribe enough of her methadone for 3 days at a time?  She takes 5 a day and they give 15 at a time.  This has caused her to run out on more than one occassion.  Thanks everyone.  

Denise

[hepcandme]

Your MIL was probably so happy to spend time with you, eat well and enjoy just having company with her family!

I think that that hospice probably only gives her 3 days of narcotic at a time to prevent her from accidentally or purposefully overdosing. I don't think that this is necessary but that is my own opinion but it also speaks to your MIL's ability to make medical decisions for herself on her own. Does she know what could happen if she takes more than the prescribed dose?

This is a situation that has stirred considerable debate about someone's right to die. If you are able to have that conversation with your MIL, you could ascertain at what point she feels like not continuing her struggle, whether she wants to dies at home, etc. and that will comfort you knowing that she is making her own decisions about this

Then hospice may be a bit more open about increasing the meds after you have had this candid discussion with your MIL. Hospice workers have legal boundaries but I get the feeling from you that  everyone on her team has decided that there should be no unnecessary suffering from pain and whatever must be done to continue that is what she wants. It is important that hospice be kept informed about these decisions and updated when necessary

Good luck to you and your MIL. So very pleased that you were able to spend time with her

[fdturley]

My MIL is not in charge of her meds except the break through meds.  We have a timed medicine box that we have always fixed a week at a time.  The reason for the box is that she does not see well enough to know what medicine.  We have a normal pill box and she got it upside down due to her vision issues and took her night time meds in the am causing an accidental overdose.  This was 4 years ago long before the esld.  Her son fills the box and she takes break through hydrocodone as needed. I was thinking maybe they didn't realize it's only a 3 day dose because most of their patients seem to be on other meds for pain.

Thanks

Denise

[Livelife777]

Hi Denise.   I'm also happy that you had some quality time with your MIL.  The fact that she was able to get out and do some shopping is a tremendous improvement.  Hopefully she is comfortable and keeping up with her meds.
It's also wonderful to have Hospice there to help with special needs should they arise.
Want to say Thank You for being an amazing DIL.  I'm sure she knows what a truly caring person you are for her.
Warm Thoughts and Wishes
......Kim