Sister in hospital again End Stage Liver

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Jenna44
New Member


Date Joined Mar 2008
Total Posts : 11
   Posted 3/19/2008 5:48 AM (GMT -7)   
Hi,
I am happy I found this Forum and I must say the only thing I am happy about these days.
My sister is 55 and has Hep C for many years and like most many years before we were aware.
She feels that it was from her youth and drug use and although she is in recovery it has not spared her these devastating consequences.
She appears to be in stage 3 of what I just read of the visible stages. She is full of fluid and it took the local hospital days to determine that it was not pneumonia and it was what we have already gone through 6 times since August of this year. Her lungs and the area around it are filled with Ascites and need to be drained as she is short of breath, incredible fatigued and can barely walk. When she goes to the hospital by ambulance I always feel we are back at square one,a new Dr and they need to go through all kinds of tests and determine for themselves what we( my sister and I , when she is aware) are adamantly telling them, as we have been there before. She does not have her own health insurance and has state insurance and I fear that is the reason our attempts to be referred to a Boston hospital go unheard.
I feel I am rambling... I apologize. I am her sister and her husband seems to be in a denial an gets angry with her and her symptoms and although when she is rational she tells me that it is his fear, I struggle to accept it and I think that is my anger.
Today she is confused, for this last hospital visit she has been the most confused I have ever seen her, and she told me in confidence that I had to convince her to let me break, that at home pre-admit she was having auditory hallucinations and that she thinks she is going crazy. High Anxiety( not that having awareness of hallucinations would not cause anxiety, enough) Flashing mood swings and severe depression. Leg Pain, and they have her on oxycodone, which the nurses are convinced causes the confusion, I disagree. She has lost 15 pounds of fluid in a week on the lasix and they are scheduling her for a draw of the fluids and giving her platelets
I feel like I am losing her and the rest of the family and her immediate family are so far in denial that I can not shake them out of it.
A family of dysfunction, but than her drug addiction and alcohol addiction and the alcohol addictions of other family members never would have survived with out the dysfunctional start.

I am her constant, I am there for each Hospital visit. I push her to ask questions, I read as much as I can about this disease and try to help her as much as I can, she has a Gastrontologist and I am home today from work so I can call him and let him know of her current situation and get some idea of where her treatment should be at and can he call the hospital and see what they are doing and maybe get some answers for us.

I work fulltime and have taken so much time off this year with her and an ailing elderly mom, that I have to find some way to do the things I need for her and not jeopardize my job..and this week the challenge is to not cry at work....schedule my despair! ( that strikes me funny today) Despair is what I feel though and incredible sadness that she must suffer like this.

Please if you have any suggestions of what I need to do differently as I have never been through this before and I am not sure how to be the best advocate for my sister and what I should be insisting on.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/19/2008 6:08 AM (GMT -7)   
Hello Jenna and welcome to HealingWell, So sorry about your sister. She is very fortunate to have you for her advocate. There is a lot of good info in the older posts so please read as much as you can. Also google FMLA. It's a federal program designed to save very ill people and care giver's jobs. See if it maybe an option for you. I used with my husband, for the last 2 years of his life. It saved my job. Keep getting educated about this disease. You will know what questions to ask her doctors. Take care....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.


Jenna44
New Member


Date Joined Mar 2008
Total Posts : 11
   Posted 3/20/2008 3:57 PM (GMT -7)   
Thank you Both, very much.
Tonight I learn her ammonia level is 60 and that is the confusion.
I will read about that.
Her husband has her at home and I go to the Doctors with her tomorrow. I will gather as much information as I can and be ready.

Jenna44
New Member


Date Joined Mar 2008
Total Posts : 11
   Posted 3/20/2008 7:39 PM (GMT -7)   
Thank you, I will ask about her sodium levels tomorrow.
I have read a lot and taken notes, I can not say how helpful this forum has been and I I dare say will be. I am really unclear where I am in this journey and I am a realist, I get that the road is headed uphill, with many low valleys, so to speak, I am in for the long haul.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/20/2008 7:51 PM (GMT -7)   
Jenna, Good luck tomorrow. One more thing. Tomorrow take notes on what the doctor tells you. Keep it with you and make notes when every you think of a question or symptom to tell her doctor. I can not tell you how valuable my little note book was to me. I'd much sooner leave my driver's license home than my note book. 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.


Jenna44
New Member


Date Joined Mar 2008
Total Posts : 11
   Posted 3/21/2008 7:16 AM (GMT -7)   
The Dr's appointment is at 3:15 and either I alone, or with my brother in law are going with her.
Her son is home with her know, kind of babysitting so to speak. Very sad.
I just got back from there. Her husband has to work so, we talked and he showed me what she is
on for meds. The Lasix, another diuretic, Blood pressure, Topol, Antidepressant, and they just added last night Lactalose 2 Tblsp once a day..which sounded off to me if we are trying to get these ammonias down. I will ask about that at the appointment.
She is still the same....very confused and weepy today. Told us she was fine and did not need us there.
When I tried to explain that she had and was confused for days, she appeared to look like I was crazy..LOL - I have weird bouts of humor this past week...fatigue and worry I think :)

I have papers from work for the FMLA and hope that it will not be hard to get a DR to fill them out as I think I will need it over the coming months, I tried to talk to my Brother In Law about it and he said, Don't get ahead of ourselves, one thing at a time. I think he still thinks that this will just clear up and we will be out of the woods, one hand that irritates me and the other is jealous. of him, for being able to deny what I can not. sad

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 3/21/2008 7:35 AM (GMT -7)   
Jenna

Welcome to the forum. I hope the appointment helps answer some of your questions today. Pink Grandma is so right about keeping a notebook with you to take notes and write down questions. Things can become so overwhelming with this disease that you can not possibly remember all the questions that can come up in a couple of days or weeks/months between appointments.

Good Luck and keep us posted. And remember in this journey to also take care of yourself.

Lucy

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 3/22/2008 9:04 PM (GMT -7)   
Hi Jenna, I want to welcome you to the forum. I am so sorry that your sister has this horrible disease. My husband also suffers from it. I will include you and your family in my prayers.
Butterflythree
 
There is always hope!


Jenna44
New Member


Date Joined Mar 2008
Total Posts : 11
   Posted 3/23/2008 7:01 AM (GMT -7)   
Happy Easter to all.
Thank your butterfly three for your kind words.
To update:
Went to the appointment with her Dr, a regular GP. Her husband was there too and it appears that we are both in a battle of wills as to what is best for my sister, the good news is we both care about her and want her well and that gives us common ground.
The Dr checked her mental confusion with tests that reminded me of field sobriety tests you see on COPS ( the TV show) and he immediately said that he Ammonia levels were to blame for this confusion and that was a relief to me as her husband was adamant all week that it was the drugs she was on., prescribed for pain while in the hospital.
My sister is overweight and replaced her drinking and drugging habits with food a long time ago, and her husband is convinced that she needs to lose weight and change her diet and that will fix everything. I agree she needs to do those things, but I also see the need for a very specific diet of no animal fats or products and low sodium, he thinks just no junk, so he suggest one thing and another. I am pushing for her to be seen by Dr's in Boston that specialize in Hep C and he is saying to her, show me you can stay on a diet and take better care of yourself and if you do and that does not help, than we can go to Boston.......ARGH!!! Makes me nuts and she is still to out of it to get through to her on that front. Sorry I digress. Back to the appointment.
The Dr said that with the Lactulose she should have her ammonias down in a few days and if we do not see any marked improvement by Monday to go back and have labs and we will re-evaluate her.
He also said her Ascites presents itself uniquely and builds around her right lower long and that is why the ER always assumes it is pneumonia, and I asked how can we circumvent that as we lost 4 days of treatemnt while we tried to convince the dr's that is what was going on, he said have the ER call him, again ARGH....the ER dr's typically want to figure this out by themselves and we tried having them call..to no avail.
So needless to say I am frustrated, and I have asked my brother in law if we can both agree that if she is in an emergency situation again, we bring her to a Boston ER... and on that he agreed. I am hoping that when she is much better, as I am seeing much less confusion already, I can stress to her the importance of getting specialists involved here. In the meantime I made her a large container of Minestrone soup with white beans and asked her to give up the poached eggs and toast breakfast for soy milk and cereal :)
I know when I first posted that I indicated that my very dysfunctional family is part of the problem, more mine problem though, they just do not get that the disease is causing the confusion and because of her drug history they want to believe that is the problem,forgetting that she has been in recovery for years.
If I were a betting girl, I am betting that I am here for awhile and I am so happy to have found this forum. I hope when things settle I can share help as much as I am getting now. Thank you

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 3/23/2008 9:56 AM (GMT -7)   
Hi Jenna, I really think your sister's husband needs to get educated on this disease. It sounds like he may be in denial. When I learned that my husband had cirrhosis, I did a lot of research on the internet. I still do. It has helped me a lot. The disease can be very confusing. Each person is affected differently. I had know idea how much the liver affected. I have had a hard time getting my husbands family to understand just how sick he is. They are most diffinently in denial. It sounds like you are doing a very good job of educating yourself. I am so glad you found us. All the people here have been very helpful to me. You and your sister are in my thoughts and prayers.
Butterflythree
 
There is always hope!


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 3/23/2008 1:59 PM (GMT -7)   
Jenna44, hi and welcome to the forum. I am so sorry that your sister is batteling this disease. I am so proud of you for getting educated about liver disease and researching with such gusto. You may be able to help your brother-in-law to understand by printing out some of the posts on this site that can educate him. Possibly he will see the corealtion of the symptoms with your sisters symptoms. Also may I suggest that you get copies of your sisters medical records from previous admissions as well as her gastro Dr's notes. If you take these with you when she goes to the ER the Er DR can refer to them. This may eliminate some of the confusion and save valuable time. But for heavens sake don't let them keep them. Give them permission to copy them only. Make sure you get them back. Your sister will have to sign a consent to get the original copies from Medical Records however. Also, you are right...you have an uphill battle facing you. Just remember that there is always hope-never give up. You have come to the right place by participating in this forum. We are all so blessed to have so many wonderful particpants. Educate yourself as much as possible as it will help you cope as well as help you to take care of your sister. GOD Bless.
 Shelly
 
 When you fall - I'll get you up and help you walk,when you can't walk I'll carry you, and when I can no longer carry you I'll stay by your side.


Jenna44
New Member


Date Joined Mar 2008
Total Posts : 11
   Posted 3/24/2008 5:30 PM (GMT -7)   
Thank you Shelly.
My sister is doing much better today, I can not detect any confusion and she seems like she really sees the seriousness of how sick she is.
We talked about diet and about how I want to go with her to her DR appointments and be a second set of ears. I discussed a care plan that she can tell me what she wants and I can try to be sure it is carried out and that she may want to appoint a health care proxy, to be sure her wishes are followed when she is too confused to convey them. I want her to know that I can be that or anyone can so long as she is comfortable with the choice.

Also Pink Grandma, I looked into the Family Medical Leave and I am going to get the paper work filled out so I can take time with no worries about my job, Thank you so much for that valuable information.

I keep reading and I will, but I do wonder, is it a good bet for me that if she has had the fluid continually build up in a short amount of time, and the first onset of real confusion, that she is entering a new stage of this disease?

I think I have mentioned that my immediate family, :) ( the very dysfunctional one) is definitely not getting the disease and with the exception of one or two, are driving me crazy, they still think that my sister is just taking too much medicine, and agree with hubby that if she stopped that and lost weight she would be fine again....CALGON TAKE ME AWAY!

I apologize for my humor attempt...it was a coping skill I learned early on in my life, and I never learned to let it go.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/24/2008 8:34 PM (GMT -7)   
Hello Jenna, Hope that you are doing okay.
That humor thing that you have. My whole family has it also, so I completely understand. It's a defense mechanism. Just like some of your family not wanting to face the seriousness of your sister's condition. They do what I call " Stick their heads in the sand". You know like ostriches do. If you can't see your enemy....it doesn't exist. It's a defense mechanism for them also. Everyone has different ways to cope with terrible situations. Some people want to fix everything. Sometimes things can not be fixed. When that happens... you just have to make the best of things at hand.
I am glad that your sister seems to understand the seriousness of her illness. That's a big part of the battle. Until they face it ....normally they won't take the steps to fight it.
My thoughts and prayers are with you. Hang in there. We are just at your finger tips if you need us.
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.


Jenna44
New Member


Date Joined Mar 2008
Total Posts : 11
   Posted 3/30/2008 4:22 PM (GMT -7)   
Update

I can hardly believe that it has been almost a week and things are calm right now.
My sister sounds and looks good. All the confusion is gone and she has taken some real proactive steps, so that we are more prepared for what may happen next.
She has made Dr's appointment with a specialist at a Hospital in Boston and we have a plan that should she need medical care on an emergency basis between now and than she will go through their ER. I can not tell you how happy that makes me.
She has filled out forms to make me and her Health Care proxy and has given me instructions on she wants her pain managed in a way that does not make her feel like she is Jeopardizing her sobriety.
That is so important to her and I so respect that.

My very dysfunctional family seems to have taken my cue that I do not want to be pulled into their Drama and that when they try, I pull back and they get that.

I am still reading a lot and trying to be prepared but I can tell by other posts that this disease rarely takes the exact same path with every one. My sister tells me that she feel like her chest is indeed filling up again so I know that for us that means within a week or so we will once gain be in crisis, as her appointment with the New Dr is not until May 6th. I will keep my fingers crossed that between now and than the Lasix she takes will help.

meg's mom
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 3/30/2008 5:18 PM (GMT -7)   

Jenna44, I am so sorry you are going through this, not just with your sister being ill, but with the entire family.  I can only repeat what others have said:  keep a notebook and write down all the questions you want to ask and doc's answers, keep reading about the disease, and pray for God's guidance.  You have some wonderful support right here with all these people who have been and are dealing with the same disease.


Jenna44
New Member


Date Joined Mar 2008
Total Posts : 11
   Posted 6/21/2008 8:28 PM (GMT -7)   
Up late tonite and thought about all the help I received here and am on again for myself on another topic but wanted to update my sister.
She just came out of the hospital again, she has been in twice since I last wrote, this last time for Pancreatitus.
She is taking better care of herself and as much as she can, she is educating herself about the disease. SHe worries about her breaking her sobriety when she is in the hospital taking pain meds as prescription drugs were her addiction over the last 10 years and she has been clean for three years, and personally I feel she still is, she is treating the pain when she takes them now.
She is on Lactulose and her ammonias are high but she is not acting "nutty" so they are not as high as they were.
I have learned a lot and am so greatful for all the support I found here, Thank you all and I am sure I will be a frequenting you all again and hoepfully will be able to share as well as I have received.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/21/2008 8:45 PM (GMT -7)   
Hello Jenna and welcome back.

Thanks for the update on your sister. I am not familiar with Pancreatitus. Can you educate me on it? I think it probably has something to do with the pancreas correct.

It's great that she is educating herself on this disease. And I understand her concern about her pain meds. But now it's legit.

Is her husband getting educated? He needs to get on the same page also.

Has she been evaluated for a transplant?

I did read your other post. Same thing just recently happened to me.
I was scared silly also. But mine came out all right so I worried for nothing.

Take care ........thoughts and prayers for you both.......
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.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/22/2008 9:58 AM (GMT -7)   
PG, pancreatitus is mostly found in heavy drinkers and usually in 40+ yrs old. The pancreas has also suffered abuse from alcohol. It can be very painfull when it acts up, most times it will trigger to much digestive juice and or bile to build up so it can feel like severe heartburn times 100 . They do pancreas transplants for people that have recieved a new kidney and also type1 diebetics. My daughter developed pancreatitus from a gall stone that got in there and irratated it. They pumped bile from her stomach for 2 days just to help the pain then they went in to remove the stones, the ER DR said it couldnt be panceatitus because she wasnt over 40 and a heavy drinker..... of course as a mom I had 5 different DRs paged,,, he was wrong and she was in hospital for 10 days.
Sue
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/22/2008 2:10 PM (GMT -7)   

Hi, Jenna!  I can speak to the concern about "relapsing" on the pain medication your sister is receiving for legitimate pain.  I had that worry myself when I had my first major surgery 5 yrs. ago, a hip replacement (and let me be the first to say that type of surgery is excruciating!)  Anyway, they knew how to taper the drugs down, so when I got home I stayed on the regimen they gave me and had no problems.  I don't know how much clean time your sister has.  I had 17 years at the time, so that can make a difference, too.  Just keep a watch on her meds when she is discharged.

Hugs,

Connie

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