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jac6781
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/14/2008 8:54 PM (GMT -7)   
My mom was admitted into the hospital Thursday because she was complaining of severe stomach pain.  After being in the ER for awhile they admitted her.  At first they told us that she had a UTI, then I was informed she had sepsis.  Tonight I overheard the nurse talking to the doctor on call (when trying to get my mom's pain medicine increased) and descibing her as an end stage liver patient.  It didn't really dawn on me what that meant until I looked it up online & realized that she has advanced liver disease.  The doctor I talked to yesterday had told me that lab tests had come back saying that some kind of enzyme was high indicated there was a problem with her liver but I didn't realize it was that bad.  She has dementia but when she was admitted she was totally confused and when I went to see her didn't even know who I was and kept saying mom it hurts (her mother is dead).  I am totally freaked out.  She has a GI consult tomorrow and I'm just beginning to put 2 & 2 together after reading some of your posts that this is probably something that is going to kill her.  There is no way she can get a liver transplant as she is 87.  She never drank and as far as I know never had hepatitis, although she had a really severe bacterial infection about 5 years ago (called C-diff) that she was really sick from.  She hasn't eaten or drank anything since Friday and the doctor wanted to know if I wanted her to have a feeding tube she has an IV).  She is in severe pain and all I could think about was to have them make her pain go away (hence the call to up the pain meds).  Tonight when I went to see her she knew who I was but is in and out of it and still won't eat.  I don't want her to have a tube if it's just going to prolong her agony.  I would rather have her go home and do the hospice thing and be with my dad.  I really don't know what to do.  Any advice or help would be appreciated. I am going to camp out at the hosptial tomorrow until I can get to see this GI guy.  It seems I can never get anything done unless I'm there (politely) in everyone's face.  It's so frustrating.  Thanks again.    

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/14/2008 9:17 PM (GMT -7)   
jac, Welcome to the forum. I am so sorry that your mother is so sick. Does your mother have a living will? If she does it will direct health care professionals on what actions should be taken in the event that she is unable to speak for herself. There are several people here that have had hospice care in their homes. I think that it can be very helpful. I myself have no experience with it, but I think if the time comes I would welcome them. My husband has cirrhosis, and I have thought that in the future when or if the time comes I would have him at home with me. I would want him to be as comfortable as possible, and I know he hates hospitals. I'm sorry that I can't be more helpful. It is such a tough decision. There are very many caring, knowledgable people here that may be able to give you better advice. I will be praying for you and your mother.

Take Care!
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/14/2008 9:18 PM (GMT -7)   
Oh ((((Jac6781))),

I am so sorry that you mom has this. You found the right forum though. We have a very diverse group here who are very knowledgeable and compassionate.

I understand your frustration. You are absolutely right in being there when the GI gets there and getting in his face if need be to get any and all information about her condition.

I for one agree with your plans to take her home and get hospice involved. I think that it's a good idea as long as someone is there 24/7 to be with her that can take care of her besides your father. He's probably a little too old to be a caregiver to the extent that she going to need one. It's a very hard demanding job.

Take care and if you have any questions just ask. Someone will probably have answer .

Thoughts and prayers for you and your parents.........
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 7/14/2008 11:58 PM (GMT -7)   
Hi jac6781,

I'm sorry to read your post about your mother's condition. And I'm sorry that you must face this situation. I hope that you get as much support and information from this group as I have.

I too am an ESLD patient, only 30 years younger so I will qualify for a transplant. Not that I will definitely get one. My transplant team tells me that a thousand people die each year waiting for livers.

I agree that the more you can do at home / hospice, the better. But you need an airtight plan so that no one gets burned out as a caregiver.

I am assuming that since your mom is rebounding from the sepsis that she is basically strong. I've had sepsis twice from my ascites and it's a bear. That she is rebounding means that you can still have some quality time left. Pardon my unsolicited advice but if I were you, I would focus on a few things: carefully watch the ascites to ensure that not too much fluid builds up. In addition to sepsis, it can impact internal organs by causing internal congestion (tape measure for belly size and scale for weight); have the doctor tailor a dosage of either Lactulose or Xifaxan (expensive alternative) to keep ammonia levels down, helping keep her lucid and more like the mom you know; and adjust her diet to minimize sodium and iron (with doctor's direction). The lower sodium helps reduce fluid retention and the lower iron eases the load on the liver. If she is a red meat eater, this may be difficult.

In any event, if your doctor is not a specialist experienced in liver disease, get a referral to one who is. Don't give up on your mom and use the time well. I'm sorry that it will be difficult, and disruptive, and exhausting, and frustrating, and tearful, and painful. But it will end too soon -- and the memories will last.

I and the others on the forum will keep you and your mom in our thoughts.

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


jac6781
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/15/2008 2:18 AM (GMT -7)   

Thank you all for your thoughts, prayers and advice.  Just being able to talk to people who have been through or are going through this is such a comfort.  My mom & dad are actually living in an assisted living facility.  My mom has osteoporosis and fractured her vertebra in her back several different times, and also her hip and her ribs. My dad was taking care of her at home until he got spinal stenosis and lost feeling in his lower legs and couldn't take care of her any longer.  He found an assisted living facility he liked and they were going to move in there together but he ended up falling before they did fracturing 2 of his vertebra and he ended up in a nursing home.  My mom went to live in the assisted living facility alone until my dad, after 2 surgeries was able to join her.  He never did totally regain his mobility but was eventually able to walk short distances with his walker.  Anyway after hearing the news about my mom, I called the facility and found out they have hospice patients there and my mom can actually go back there in the apartment with my dad and be cared for "at home" with him so that makes me feel alot better.  In that respect I'm blessed.  It's just so hard to believe, even though she's 87 and after all she's been through, that this could actually be it.  On one hand I know that she's suffered alot with all her problems and if she were to continue on eventually either this or something else would take her but on the other hand I just want her to rebound one last time.  I guess mentally and logically I was prepared for the  inevitability of this time but emotionally I'm still not.  She was always there for me and I just want to be there for her but sometimes I feel lost because I don't know what to do.  I have power of attorney (medical and financial) for both my parents and she does stipulate in there that if there is no chance of her recovery she doesn't want any extraordinary means to prolong her life so I guess I'm just waiting for someone at the hospital to tell me officially that there is really nothing more they can do and how long she has.  Well like I said thank you so much for your support, you guys are great & I will be praying for you & yours also.

Julie  

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