Liver Failure

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Liver Failure
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Recent Terminal Diagnosis - End Stage Liver failure

I was diagnosed with end stage liver failure in February, unfortunately I have only gotten the bare minimum in regards to my future health plan, how to set up appointments with the specialists I need, prevent the disease from progressing in addition to my heart failure, supportive help/groups, and overall health/recovery/care. #LiverDisease #liver
#selfcare #wellness #Transplant #hepatologist #MedicalBills #MedicalProfessionals #MedicalResearch #nutrition #bilirubin #LiverFailure

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This piece ks called I Erode #MentalHealth #ChronicIlless #Undiagnosed #Algernoning

I made this piece a few years ago, but it hit me hard today when I came across it.
I feel like over the past years (especially the past 5) so many pieces of me have slipped loose and washed away. My brain doesn’t feel like my brain anymore; though, I can’t even at this moment remember what my brain used to feel like.
I keep adapting backwards and have reached a point where I’m not sure how to make realistic goals anymore.
For five years now, I have struggled with chronic progressive neurological symptoms. The first 3 and half of those years were spent being sent back and forth between specialists and neurologists writing off my symptoms as soon as I saw they saw that I have PTSD. One neurologist actually tried to diagnose me with a pysch disorder without ever calling my psychiatrist (who had referred me to her).
I love words. I have always loved having just the right word for something. Several different people have given me the nickname “Dictionary”.
Now, my aphasia and productive speech issues have me lost mid-sentence or blurting out a word that wasn’t the one i intended, or there is just a blank space where my word should be.
I’m an artist and illustrator. But the tremors have gotten so bad that I am rarely able to make work.
Muscle weakness and discoordination have made walking trails and even museums a rare indulgence with at least a full day of recovery time.
More and more I have no idea how to respond or answer questions.
Playing piano “fluently” is nearly impossible.
And now losing sensation in part of my abdominal muscles and balance issues mean dance and dance warmups (for exercise) are potentially dangerous.
I get lost in activites and days and forget the context.
I feel like Schröedinger’s Mickey. I am both Mickey and not Mickey. And I’m afraid to open the box and find out too much of *me* has gone to really be *me* anymore.
The me that cultivated meaning after trauma by working to help others.
The me that survived stage 4 liver failure and a metabolic coma and fought for sobriety.
The me that would hide behind my daddy’s leg in the supermarket because it was too *everything* in there.
The me who danced and sang and taught art to children.
The me who had friends.
I’m most scared of losing the me who birthed two amazing humans and the me who gets to cuddle with them and listen to their beautiful thoughts, and even clean their earwax.

I no longer am certain *who* I will be in a month or 6 months; what other pieces might disolve away.

For now…I am.
#PTSD #predementia #Surviving #Identity #LiverFailure #comasurvivor #Neuropathy #CognitiveIssues #Dementia #Undiagnosed


Have cirrhosis; just had Acute Renal Failure and I'm scared

#LiverFailure I am looking for a support group for my liver problems. I have had autoimmune problems and endocrine problems my entire life. Together, they have caused severe damage to my liver. I am now 57 and very disabled by liver cirrhosis. Earlier in life, I was too sick to do things other people did -- I never had a full-time career and was unable to have children. I am very sad about this.

I just spent the last six days in the hospital with Acute Tubular Necrosis, which I hear is not as bad as Hepatorenal Syndrome. Still, that I've now had a severe kidney problem in a addition to the cirrhosis worries me a lot.

I really need some sort of liver support group, but can't find one of people who are similar at all to me.

I would also like to find an in-person group therapy situation with other people who have severe illnesses and are having a hard time coping, but I don't know how to find one.

Any suggestions? I live in Southeast Michigan.

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