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Started with cancer surgery 7 wks later still battling liver issues...

I will try to make this brief.  Two months ago my MIL was diagnosed with retroperineal liposarcoma over 30c.  Surgery was 7wks ago today, as soon as surgeon opened her came back out and stated she had what appeared to be cirrhosis could bleed out and asked what they wanted to do my husband chose to proceed in hopes of more time with his mom.  Since then she has spent most of her time ammonia up and down potassium up and down infection from incision and who knows where else ascites heptatic encephalopathy and just mainly out of it.  She will have a day or two where she is somewhat coherent but can not do anything for herself not eating. She is on a slew of medication some of which I question.  They have made several 'bad' calls in my opinion but I am not a doctor.

We have raised many questions to which we can see is not appreciated by the doctor nor nurses at times.  My husband and I work and have made as many SICU visits as possible most of the time no doctor to be found even when we request a meeting.  Having said that he made some remarks I found extremely unprofessional even upon the most frustration or whatever was on his mind when he used the F word 3 times describing her condition and that she just had a 'f' liver.  I contacted UAB here in Birmingham procured the name of a liver specialist and had my sil give it to the doctor and asked him to call to have her moved.  Supposedly he did call and they said our hospital was doing nothing different than they would.  Although her doctor successfully removed this mass a kidney and adrenal gland........she is battling things I feel are WAY above and beyond his area.  Now he said she needed a neurologist.............???  Why do you need a neurologist if your liver is so bad.   I was able to get my hands on her charts, the nurses chart (after they saw me with that one they went and hid the doctor chart) I took pictures of a lot of notes.  In the pathology report it states:  liver package stains on specimen #2 consistent marked fibrosis and nodularity consistent with cirrhosis (stage 4 of 4)...............this doctor told us after surgery she had mild cirrhosis just above what he called the childs level we assumed stage 2.  Does this not note she has stage 4?  If so it totally explains all of the fluid levels fluctuating not eating not coherent etc.   I don't know whether she is in a holding pattern that will be this way for a while or if she in fact has things much beyond what we were told.  There are many things mentioned in this report that have floored me which they have made no mention of.    I know this way not short but me like many here can't sit back and watch her just leave us...............BUT if this is shortly inevitable then why hasn't the doctor said so.  He is trying his very best to cast her into a nursing home, they can't care for patients with all of the issues she has.  I am so overwhelmed and distraught, I really would love an honest to goodness answer.  Thank you for listening and any response you can give.  
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Avatar universal
"I contacted UAB here in Birmingham procured the name of a liver specialist and had my sil give it to the doctor and asked him to call to have her moved.  Supposedly he did call and they said our hospital was doing nothing different than they would."

First, let me say, my husband had his liver transplant at age 66. The lesson to learn here is just because someone says something like ""she is not eligible for transplant because of her age" does NOT necessarily make it true.  Your MIL will need to go through an extensive  evaluation process with the UAB Liver Transplant Center team. They and they alone will decide whether she is eligible for listing on the transplant list or not. This decision will be based on her full medical condition.

As a matter of published fact on the UAB report filed with the Scientific Registry of Transplant Recipients for the year
07/01/2012-06/30/2013, shows that over 15% of the new waitlist
registrations were 65 and older.

Go to this link:
http://www.srtr.org/csr/current/Centers/201402_1401/pdf/ALUATX1LI201402_1401PSR_P.pdf

(See Table 2 on page 7 of the report.)

If I were you, I would contact the liver team at UAB directly and speak to them about their referral process. Stress the urgency of the situation and that you would like her transferred to UAB as soon as possible.

Your mother in law is entitled to copies of all of her medical records. Is there someone who is her legal representative? Given her condition, she may not be able to sign an informed request. Her representative should take care of this immediately with the records dept of the hospital where she is.

The most important thing is to have her moved asap to UAB for that evaluation.

Please keep us posted. There are many here who can continue to give your support and advice based on personal experience.

Nan


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Avatar universal
Don't just walk to the nearest door, run.   This Dr is a joke.  You have been given bad advice.  Find a hepatologist in your area that has a good background or following.    Go on line and read patients comments.  Your moms condition is treatable.   You say your mom is not much of a drinker so you need to find the source of her cirrhosis.   I don't know the extent of her cancer status but if stable and she is in good health a transplant is not out of her reach.   If it is not an option, there are meds she can take for her symptoms, and they can then be manageable.   I am also a cancer survivor with liver disease.   I live a very active, healthy life.  I'm truly sorry that her doctors have mismanaged her disease.   All medical records do belong to the patient and from what you have described this is totally absurd.  No one deserves to be treated as such.   Be proactive and you will get results.  Good luck and should you need further help we will be here for you.        Kim
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Avatar universal
Thank you for your comfort and prayers.  We do need them - but I think an honest answer from the doctor or ability to get her help if that's possible.
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Avatar universal
We did not even know she had cirrhosis until her surgery to remove cancer mass.  There has been apparent family liver issues.  She is not a heavy drinker my only guess is it was inherited OR all of the meds her primary had her on treating all of the systems of the cancer.........this cancer had been growing for several years without any word or follow up from her physician.  They indicated her liver test did not show issues.

I asked week three into this and I was told by the RN she was not a candidate for transplant due to her age.....she is 64. I said what about the care of a liver specialist (we have asked this several times and we really get shunned so we don't know if he is 'too proud' or what we just do not understand.  She was in what I would say was good health had a lot of complaints of pain or issues but lead a normal lifestyle.  
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Avatar universal
I'm so sorry what you are going trew this is a terrible disease to have Its good she has you I hope you are taking care of yourself have they mention if she could be put on a transplant list how old is she and where did the cirrhosis come from I will keep you in my prayers
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