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144210 tn?1273092382

Gauf's sister stage 4 (bad)

Any of the old crew still lurking out there? I am Gauf who treated and succeeded a couple yrs back. Just got word my sister is in hospital with end stage liver disease. Stage 4, jaundiced, ascites causing extended stomach. They drained 7 liters and 7 more 5 days later. Kidneys good, varices not bleeding. She will need a transplant. Wondering about supplements that I used during my own treatment might help keep her going until transplant. Any advice appreciated. She is alcoholic (stopped drinking) and only 49 yrs old.

P.S. I am still SVR and doing well.
9 Responses
419309 tn?1326506891
Gauf, how nice to see you, though I'm so sorry to hear it's such a terrible situation for your sister.  From my own experience with my husband's (ex-)transplant team, I know the guidelines for a compensated liver are much more expandable than those with full decompensation... I wish I had more input... what I do know is that when my husband was eligible for TP, EVERYTHING he took, rx or OTC was supposed to be run by his TP team, and the guidelines were pretty strict.  

Very important to get your sister hooked into a Transplantation Center ASAP if that's not yet been done; if so, the TP team should always be the final resource on yays and nays on supplements... even vitamins can be contraindicated in some cases with someone with decompensating liver disease.  

I hope your sister can be evaluated and found eligible for transplant soon.  Remember too, with current medicine, cadaver transplant as well as living donor is an option if her region has a long waiting list.  

Really glad to hear you're doing well, your story was always an inspirational one... good that your sister's staying sober -- essential for TP consideration.  My thoughts and prayers with you and your sister.  Best wishes. ~eureka
317787 tn?1473362051
Hi there are many people still around who remember you, in fact if you do a search for Gauf or Medical Research you may find what you are looking for.  I know you helped a lot of people.  I wish you and your sister the best now.
163305 tn?1333672171
I remember you, hello Gauf!

In the months before my transplant I stopped eating anything with salt and all red meat. Read labels and look for sodium content.
Salt increases fluid build up.
Red meat can increase ammonia levels.
High ammonia levels will cause encephalopathy, mental craziness of a kind, requiring a medicine called lactulose.

I was told that egg whites and white tofu could help increase albumin levels.

I took all kinds of supplements from bromelian to tumeric.
My D levels were low so I took vitamin D.
Calcium/magnesium would  be good too.

She should see a dentist prior to the transplant. It's hard on the teeth.

I think the best thing I did was make life as easy on my liver as possible.
I ate organic, non-processed food.
We had a juicer. Beets are great for the liver.
When I had the energy I got outside and walked, even for just a short ways. I believe movement is important.

If I can find any other information from that time, I'll let you know.
Good luck,

446474 tn?1446351282
Hi stranger!
I am sorry to hear about your sister's condition.

"Wondering about supplements that I used during my own treatment might help keep her going until transplant."

End-Stage Liver Disease (ESLD) is not reversible in most cases. (Depending on which stage of cirrhosis she has). Your sister most likely need a new donor liver at some time in the future, unfortunately.

As far as vitamins and supplements the transplant center should manage ALL of her medical needs. Including what she eats and ingests. All medicines, food, vitamins, supplements need to be known and approved by the transplant center.

Small things that won't harm a person with lesser liver disease could be fatal when a person has progress to End-Stage Liver Disease. The liver is involved in processing all ingested food stuffs including vitamins and minerals. During ESLD the liver is so damaged it is unable to perform its normal functions. A very simple example is salt/sodium. Obviously a natural product that we all need, yet for someone with ESLD too much sodium can cause massive ascites with can lead to Spontaneous bacterial peritonitis (SBP) which can be life-threatening.

The best thing you can do for your sister is to make sure she gets "listed" at a good transplant center where they will care for all her medical needs both before and after transplant. The doctors at the transplant center work daily with persons in your sisters condition and know that best ways to stabilize and manage her illness until she is able to get a transplant.

FYI: Abstinence of alcohol and illicit drugs for longer than 6 months is usually required in order to be listed.

If you need more info on ESLD, liver transplant, getting listed, wait times,meds to manage ESLD, etc. let me know. Since we last communicated I have developed ESLD and HCC (liver cancer) and am listed at two transplant centers.

I wish your sister the best of luck.
Glad you are SVR and doing well!
179856 tn?1333550962
I'm sorry Gauf I remember you well, after all you have been though now to have to deal with it with your sister is just not fair.

I wish you all the best and hope for a miracle for her shortly!
Avatar universal
It is great to see your name again although I'm sorry to hear the reason.  Your journal is still here and I have directed many people to it since you've been gone.
Joe is retreating with the new meds and it appears to be working finally.  
I will pray for your sister.
374652 tn?1494815035
Hi, I remember your name, I'm so sorry to hear about your sister.  I hope she gets the help she needs and that you find the strength to support her.  
Healing thoughts your way,,
476246 tn?1418874514
Good to see you around Gauf!

So sorry to hear about your sister! I hope and pray that she will be able to beat this!!!!

Wishing you and your family a lot of strength to be able to support her!
223152 tn?1346981971
I am so sorry to hear of your sister's condition.  
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