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Liver transplant - Let's support each other
Transplants | Last Active: 2 days ago | Replies (1617)Comment receiving replies
This has been a fantastic conversation and I want to expand upon it.
For anyone not familiar with hepatic encephalopathy (HE)), it is a buildup of toxins in the brain.
"A liver damaged by cirrhosis isn't able to clear toxins from the blood as well as a healthy liver can. These toxins can then build up in the brain and cause mental confusion and difficulty concentrating. With time, hepatic encephalopathy can progress to unresponsiveness or coma.
Cirrhosis often has no signs or symptoms until liver damage is extensive. When signs and symptoms do occur, they may include:
Fatigue
Easily bleeding or bruising
Loss of appetite
Nausea
Swelling in your legs, feet or ankles (edema)
Weight loss
Itchy skin
Yellow discoloration in the skin and eyes (jaundice)
Fluid accumulation in your abdomen (ascites)
Spiderlike blood vessels on your skin
Redness in the palms of the hands
For women, absent or loss of periods not related to menopause
For men, loss of sex drive, breast enlargement (gynecomastia) or testicular atrophy
Confusion, drowsiness and slurred speech (hepatic encephalopathy) "
https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487
-Were you told about the signs of HE to look for when you were diagnosed with liver disease?
-Were you monitored in any way by your medical care provider?
-What do you wish you would have known then, that you know now?
- What kind of hope and/or encouragement would you share with someone who is new to this conversatioin.
@racing212, @gaylea1, @wildcat, @contentandwell, @jeanne5009, @rowdyramsey, @flagal22, @mostlybill, @tgshomes, and anyone I missed: I hand the mike to you.
Replies to "This has been a fantastic conversation and I want to expand upon it. For anyone not..."
@rosemarya the only thing I can add about HE is that the the symptoms vary so much from person to person, and there are those very fortunate ones like yourself who never have HE.
Also, the other symptoms vary a lot from person to person. I never jaundiced, had loss of appetite (except during an HE episode and not always then even), only lost weight intentionally, did not have ascites until very shortly before my transplant, I was not itchy, and do not recall my palms being red.
Other common symptoms not mentioned here that many people have, me included, are shaky hands, (as my cirrhosis progressed I couldn’t get a spoonful of soup to my mouth), plus I was always very cold, had leg cramps (these were mostly in my thighs and were excruciating, but thankfully passed in about 10 - 15 minutes), declining platelet counts, and recently diagnosed diabetes.
HE was what brought the fact that there was something wrong to a head so I didn’t need an explanation, I had been having episodes for almost a year and a half at that point. I was monitored and I think I knew everything I needed to know after I finally had a diagnosis.
I went to my local hospital when I had HE episodes, in retrospect I wish my husband had gotten me to Mass General, my transplant hospital. My local hospital really was not that familiar with HE and my treatment was pretty bad.
Another time the NP called and said to get to the hospital immediately, to go local. My hematocrit and hemoglobin counts were very low. I think the counts were so low she was concerned that if my husband drove me to Boston, a good hour away, I could have a problem because the doctor at the local hospital said my counts were so low that I could have had a cardiac arrest. They sent me by ambulance to Mass General. I am not sure if my situation would have been handled as well in the local hospital.
For those going through this, I can only say if you have found an excellent transplant center and an excellent hepatologist, just do what is suggested and take care of yourself, let them know if anything is wrong. Be confident and positive, better days will come.
If you have not yet chosen a transplant center, do your research and find the best that is geographically available to you, or that you can get to if it is a distance. There are a number of helpful sites, one is SRTR.org.
JK
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I had all these symptoms (regarding women) except the ascites.. It was brutal.