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SIL in serious condition

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Posted 3/19/2015 12:09 PM (GMT 0)
HI all just a check in to update about SIL.

She had an oblation done on her hcc last week and seems to be doing pretty good with that procedure.

We started this week the pre-transplant appointments. Tuesday was our first appointment with it to meet the coordinator and social worker and such.

This meeting was a disaster and she has been told that she needs to become compliant with what she is told to do. She refuses to be forth right with the health care team. They caught her in so many false truths concerning her lifestyle. I cant get her to understand that you have to be completely honest with them and if they think you aren't being honest with them they will find out.

It is very hard for me to watch her continue to be like this, she seems to think the old games are going to get her this gift of life, and this is what I see it to be. "a gift of Life".

She is currently in the hospital at osu medical center due to her non compliance of fluid intake and salt intake. After we finished the appointment on Tuesday as we were leaving to come home received a phone call from her GI that she needed to go to emergency room immediately that her sodium levels were dangerously low. When we arrived they took more blood from her and eventually we were taken to a treatment room where we were informed they had gone even lower than first test earlier in the day. She was admitted and they are trying to balance all this out and I am not sure how long she will be there.

I personally am having an issue with the transplant procedure and her going through this process. If she is not going to be compliant with what she is told to do pre-transplant what makes them think she is going to be compliant after transplant and take care of this gift of life. There are so many people that need this gift of life that are doing what they are being told to do, then you have my SIL who thinks she can bs her way through the process and continue to lie and manipulate her way to getting this gift.
Posted 3/19/2015 3:03 PM (GMT 0)
Theena,

Compliance is essential. As are a few other things. One being the psych evaluation...where the doc meets with the candidate and must write a letter to tp center saying a few hings...most notably that candidate is sound enough to endure stresses ofvtp. AND they they are unlikely to relapse into drug and alcohol use...

I am glad to hear she hat treatment for her hcc.

Please Remember that you have given you sil the only chance she will get. But it is on her now. The truth will come out.

I pray she makes a good decision.

Hugs, ML
Posted 3/19/2015 3:27 PM (GMT 0)
I am sorry to hear Laurie is in the hospital again. You must be exhausted, Sharon. I have wondered how things were going. It is good to hear from you, but you sure do have your hands full.

By the time caregivers get a very sick loved one to transplant, they are pretty wiped out emotionally, and physically.

Taking care of oneself and another adult human being....it is a challenge. Especially when the disease is not very charming in the end stages of it. We hear a lot of caregivers that feel just like you do at this point. I must say some of the behavior....maybe most.... is the disease, not the person. ESLD really makes personalities change for the worse. And when someone is not with it mentally and can not care for their basic needs...nutrition, taking medications on time, driving, doing their own bills, insurance....forces a caregiver into a roll more like a parent/nurse. Separating the behavior from the disease is so very difficult for a caregiver.

You are doing a remarkable thing here, and I admire you for caring for her so well.

I think Laurie is having a common and serious problem with low "serum sodium".

Have you seen the newer MELD NA calculator? You can do her MELD with and without the low sodium. You will see for yourself how a MELD with low sodium vs one with normal sodium looks.

You also may find this interesting to look at regarding some of the things going on now with low serum sodium and transplants.

transplantpro.org/wp-content/uploads/2014_06_Liver-Action-Item-Add-Serum-Sodium-to-the-MELD-Score-Draft.pdf

www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-na-model

I know themister, my husband, tries to do everything right with sodium/fluid/meds intake, yet he also has had his serum sodium drop on him. When the liver is shot, things are not in balance. Themister's MELD is 2 pts higher when we take in account his Na level.

With the bonus pts for HCC, Laurie should be at least MELD 22. I think once they complete her eval, she won't wait long for transplant in Ohio. They transplant in the 20's, right. What MELD does OSU make offers for her blood type.

Oh, I wanted to ask if she treated the Hep C, or will do that post transplant? We have seen a few treating up to transplant, and continue right after. Good results with the new treatments.

How are the kids and your husband? This is a big challenge for all of you, I am certain. Big Hugs
Posted 3/19/2015 5:26 PM (GMT 0)
We go see the infection control hepatitis Dr I believe in 2 weeks concerning her hep C so should know more about what they are going to do with that part of her problem.

With the way she was with social worker and refusing to answer some of her questions has only cause more investigation in her life. She has made some changes, but they are very few since she has come here to live. What they were saying to her is that she needs to show them that she has addressed the issues that caused her to drink. She has not worked out anything and her attitude is that is none of your business and refuses to even discuss any of these things. These medical personal we are working with are far from dummies and have probably heard and seen it all. She has to do the work to get herself where she needs to get to in order to be put on this list and there is not a lot that I can do to help her other than take her to her appointments.

The doctors are all aware that she is non compliant with what she needs to do. I remind her daily about things and try to control her fluids and salt but she is sneaky about it and waits for me to go to bed to start her eating and major drinking of fluids. Other than locking the kitchen door so she cant get into it there is not much I can do about it.

I keep getting her off the pain meds, yet she knows what to say to the er doctors to get what she wants. she went through about 10 days of detox off of them and it was horrible for all involved, to only go behind my back to get a ride to the er. I had refused to take her as I knew since she had emergency blood work done with the pcp earlier in the day and it came back her norm . She got there cried about pain and got her morphine shot and other pain meds and sent home as her blood work there was her normal range. She did the same thing Tuesday night in the er and they just plainly accommodate her even after I try to explain what is going on.

OSU transplant at 18 and she is currently at a 22 with the hcc diagnosis. She is now showing issues with high blood sugars also. But according to transplant coordinator the 22 is not guaranteed until they take it to the board to get the credit for it.

They are currently adding magnesium to her nutrients to try and balance out her potassium and sodium levels, and talking about putting a port in as she is getting harder and harder to get blood from due to her veins being so scarred.

I feel that I have done what I can do to get her to this point and the rest is up to her. I refuse to lie to these professionals though so that she can lie her way through this process. She is still blaming everyone else for her being where she is in life and she has to start accepting responsibility now to show them she will do what she needs to do to take care of this precious gift of life.

She has me emotionally physically and mentally exhausted and has started to exhaust us financially, and I have started making her add to the household when she gets her disability checks and also have started making her pay for gas for her doctors appointments. She does buy some of her own groceries but also seems to an issue because of her choices she is making. ( at least there is no alcohol involved with that)

Hubby goes back and forth with his emotions with this, as of course she is his sister and doesn't want her to be in pain and suffering. Yet on the other hand he is like she hasn't really changed and refuses to enable her either. The boys are actually doing well both have made honor roll this 9 weeks so that tell me they are okay. They do get frustrated with her when she tries to insert her non authority over them, and play mom of convenience with them.

Please don't get me wrong I want the best for her and for her to have a quality and quantity of life but she needs to work towards these objectives also.. She needs to stop expecting to be handed to her

Sharon

Post Edited (theena3) : 3/19/2015 11:29:37 AM (GMT-6)

Posted 3/19/2015 8:00 PM (GMT 0)
The transplant docs check for everything, and will discover anything she's cheating on, especially drugs or alcohol. Too much sugar is easily verified. No need to tell them, her attitude and blood work will let them know. Let's hope that she realizes that her life can be saved if she does the right things. My docs have made it clear that the liver I received is "theirs" and refuse to let me waste it.
Posted 3/19/2015 8:26 PM (GMT 0)
Thank goodness the kids are doing so well. You and your husband are really remarkable with all you both do for them and their Mom. I am sure you are very proud of the boys.

I am worried about you. Is there any chance you can get a break away for a few days? Recharge your batteries, as it were? I know what it is like to be financially, emotionally, and physically spent. I care about your health and hope you can lighten your load some.

I know you want the best for Laurie or you would not sacrifice so much. You are just tired and frustrated with how difficult this all is. I remember you brought her home and thought she had 3-6 mos. to live. She is lucky to have you and your husband. As a caregiver...I really do understand how hard this is for you.

I would ask the transplant center what they need to list her at this point. Are they requiring AA or anything like that? She has over 6 months sobriety, was referred by a doctor to them, is having all of her medical concerns addressed, like the HCC. All of the testing should be done by now. What else is left?

I have never heard of a transplant center using food and water for non-compliance. Did I misunderstand this? I think this is a misunderstanding on my part. You all will benefit by Laurie getting transplanted sooner, not later. The sooner she is well, the quicker she can move back into her own life and manage her own medical care. It is incredibly difficult to do all you are doing.

Let's hope the transplant center is able to get her listed and move forward while she is well enough to survive the surgery. You guys are lucky to live where MELD is so low. That is the lowest I have heard of!
Take care of you. You are important.
Big Hugs
Posted 3/19/2015 9:04 PM (GMT 0)
I am looking into a respite group to help give me a break, as I agree I need to get away from all this for a few days.

What the transplant center needs is for her to be completely honest with them, as David said they will find out all the nitty gritty they need to make a decision. She has to talk to a their Psychiatrist for that evaluation. We actually have just started this process and still has vascular, pulmonary and heart dr's and infectious control yet and they are all scheduled.

Her non compliance is not just the what she is eating and drinking there are many other things involved with her not being compliant. They want her off the pain medications completely for one. The thought process behind this is that she has switched the pain meds as a substitute for the alcohol. Abuse is abuse and if she is going to continue to abuse what is left of her old liver, they have to assured that the new one will not be abused. She is considered a very high risk by pain management for addiction. She must address these demons that have ruined her life prior to this. She also has the attitude I am gonna do what I want when I want and to hell with what I am told to do. ( this has not changed over the 30+years I have known her) If she is annoyed by beeps of machines in her hospital room she will shut off the monitors and will continue to do so until they decide it isn't necessary and they give up and take them off.
She refuses to work with a counselor as she feels it is non of their business. She did the same thing 9 years ago in rehab also, So this is not all new with the disease it is her personality.

I also miss typed transplant meld score it should be a 20 not 18, 18 is what her score is with out cancer points
Posted 3/19/2015 10:14 PM (GMT 0)
Thanks for the MELD 20 info at OSU, Sharon. We have a lot of our members wanting info on low MELD centers and it is good to know about where the offers are made in your state.

I am REALLY happy you are going to take a break. Really glad. You are doing the right thing.

Could your husband take the caregiver role with some of the transplant evaluation appointments and the visits with the doctors? She can have more than one caregiver. With the children's needs and your own life...you maybe need to mix it up with who does what for Laurie.

I see what you mean about the personality. Not good. It is frustrating to hear about things like monitors...let alone watch it happening. HE can be blamed for many things, but not all things. Hang in there. You are a good person, just exhausted. Big Hugs
Posted 3/19/2015 10:46 PM (GMT 0)
I wish hubby could but his work schedule does not allow for this, he works out of town most weeks and is working 50-60 hours a week..She behaves with him and does what she needs to do when he is around. He does try to give me breaks on the weekends with her a few hours at a time.

I will try to put together info on OSU transplant info so I can post it on here for others also. I know how much this site has helped me in the past 6 months and anything I can give back I will. :)
Posted 3/21/2015 3:18 PM (GMT 0)
How are you doing, Sharon? Thinking of you and yours today. Big Hugs
Posted 3/21/2015 3:24 PM (GMT 0)
Brought her home yesterday with a diagnosis of hyponatremia, Last night she ended with with major edema involving her feet and legs, had to call the doctors to see how to handle it, was able to get it to reduce with rest and feet major elevated. This morning she still has minor edema and waiting on the local doctors to call back.

Hate to say this but I was able to relax a bit while she was in hospital but within 3 hours I was ready for another break. After I finally get a call back from these doctors this morning I am planning on spending time with my daughter and grandkids for a while this afternoon just for a break and to enjoy myself a bit.
Posted 3/21/2015 5:40 PM (GMT 0)
Let us know if Laurie is taken back in....not sounding so good.

I did not know you had your own grown kids and grands, and also Laurie and her children. Wow! Of course you need time to enjoy them!

Don't you dare feel one bit guilty for taking care of your own emotional and physical needs. It takes much more than a day or two to get on your feet after so many months of caregiving. Have a good day with the kiddo's and then let us know about the medical stuff. Big Hugs
Posted 3/21/2015 7:05 PM (GMT 0)
I have 3 grown children and 10 grand kids.. ranging in age from a month old to 14.
Posted 3/21/2015 7:18 PM (GMT 0)
Plus the auntie duties!

Tour cup runneth over...in both the good way and the not so good way.

Thinking of you all.

Hugs,

ML
Posted 3/22/2015 2:28 PM (GMT 0)
Doctors aren't very concerned with her edema, local doctor seems a bit miffed about me calling him on the weekend. Had to bite my tongue with him a bit yesterday.

Just making her stay down the past 2 days to see if we can get this edema to go away.

I did get to spend some time with my daughter and her kids yesterday. Holding the wee little one is a great pick me upper, esp when she is so small her little hiney fits in the palm of your hand.
Posted 3/22/2015 3:31 PM (GMT 0)
Themister takes generic lasix and aldactone and uses TEDS when his legs are bad...but the water pills do a pretty good job. I figure she is doing the same? We count sodium intake with each bite.... and sometimes he still swells. Frustrating, isn't it? Some of this is how it will be until transplant, I guess.

The addition of Xifaxan seemed to increase the lower leg edema.

How nice you have a new, little one, Sharon. I am glad you have had some small moments in the midst of care taking for Laurie. Big Hugs
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