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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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Here I sit in the Hospital

Yes here I sit or rather lay in the hospital bed. Nervous I have a #liver biopsy getting done tomorrow. Happy drs finally listened. Sad because as of yet the don't know what's exactly wrong.
I had a ct scan of my abdomen in January all it said was fatty liver. My swelling (didn't know it was my liver atm) I though was another hernia or my back. 10 mths later. I see one of my Dr's and tell them about all the symptoms I been having lift up my shirt to show the swelling & they freaked.
I was admitted to the hospital by that evening and that was on the 1st. Have had numerous blood tests, gastric emptying test another ct with & without contrast. My liver is very inlarged and the found a total of 6 lesions on it one measuring 14mm.
So here I lay at night in my #Hospital bed.
#liver enlarged
#chronic pain


When is it ok to give up?

TW: depression, trauma, terminal illness *super long vent, sorry*

I feel like this #Cancer is taking everything away from me, what little I had left. Prior to diagnosis in April, I had to quit my job for health reasons and filed for disability (medically approved now but for the cancer but still no final word from them). I was struggling with #CPTSD , #MajorDepressiveDisorder , #ObsessiveCompulsiveDisorder , #Fibromyalgia , #PsoriaticArthritis , #Asthma , #sjogrens , #SevereAllergies , #Bursitis , #PolycysticOvarySyndrome , #DiabetesType2 and a bunch of other complications from all of these things plus a few more diagnosed illnesses. All whilst trying to get a divorce (still trying to get it).

So in April I go to the ER thinking Covid. Nope. Lungs both full of fluid from #CongestiveHeartFailure . Apparently I had a heart attack and didn’t notice as I was told a lot of chronic pain patients don’t because we’re used to random severe pain. Also they found a grapefruit sized tumor on my liver, stage 4 #BileDuctCancer in my #liver and it had spread to some lymph nodes on my abdomen. I have no medical insurance.

So now here we are in July and I’ve been in chemo since May. I’ve had a few minor surgeries/procedures and I have to have my port removed/replaced which is why I’ve been in pain there since May.

Now it turns out on top of mouth problems, fatigue, low white blood cells as side effect to my #Chemotherapy , I have been diagnosed with #ChemotherapyinducedPeripheralNeuropathy which has been the most painful experience of my life. They said it was a severe case.

They also think either a #cateract or #Glaucoma in my left eye which is why my eye hurts and I can barely see. Either could leave me blind. I’m an artist by trade, I’ve won awards for my cakes and every one of my hobbies is art/craft/visual. Now I can’t tolerate any amount of light without it being painful and I can’t do anything with my hands without being in major pain from the neuropathy. I can’t enjoy anything or do anything for myself, already fell down the stairs last week because of my vision/neuropathy combo.

Also, I’ve had to get 2 Neupogen (helps bone marrow make white blood cells) shots this weekend and like every other week. The bone pain makes my body shake uncontrollably and nothing will help it.

All this has led to me being a walking pharmaceutical cocktail and the side effects are brutal. I picked up a new med today, tonight my little medicine bag overflowed and I broke down. I just turned 40 in May. I have more meds than years on this earth. I have a terminal illness that makes me ineligible for the heart transplant that I need but im technically not dying according to my oncologist.

So at what point is it ok to say I’ve done enough, I’m tired and I give up, I want out? Daily living is torture and there’s no joy.

Thank you if you made it this far!

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When Captors Masquerade as Allies

As of June, 2021, I will have been eligible to get the #COVID19 #Vaccine for over four months now as a Solid Organ #Transplant Recipient. I am a person who received a #liver #liver Transplant, younger than the average, at the age of 35. My transplant journey is a rough story concerning my life-long battle with #hepc , six treatments, and six plus years in End-Stage-Liver Disease.

This story isn’t about me, per se, but about the circumstance that I find myself in, along with so many of my peers. Before I explain further all of this, some background is in order as to explain the importance of understand the nuanced differences in vaccine hesitancy and folks who are among the “#unvaccinated ".

Read the whole story here:

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Liver and a Fighter, my MPH Graduation

In the last few weeks, I finally managed to graduate with my Masters' in Public Health despite a slew of obstacles.

My life-long journey with #hepatitisc ended shortly after transplant, on my sixth treatment in 2017.

But as a #Transplant recipient and Hep C Survivor, the fight is never over. As a patient my experience continues, as an advocate my experience only grows and fuels the fight to eliminate #hepc .

#liver #LiverTransplant #LiverDisease

it's a long story:

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Here's a little Dr humor to start you day! #Lupus #sojourns #Asthma #Fibro #CFS #chronic pain #degenerative arthritis #liver damage

Hope everyone has as good a day as possible. Blessings 💜


Angiomyolipomas in kidney and simple liver cysts. #angiomyolipomas #liver #KidneyPain #abdominalpain #diverticular Disease

I have had a number of seemingly unrelated symptoms but more recently a number of them got worse. I had an ultrasound and ct scan which showed a simple liver cyst (does not say what size), diverticula (not inflamed) and angiomyolipomas on left kidney (1.1 cm). My doctor says no way pain from liver or kidney blames everything on digestion. Does anyone here have ever had any experience of pain from a simple liver cyst? This seems to flare up for few days then eases off. I usually get nausea and bloating with this. Lying on my right side recently seemed to trigger it off for 2 days. It also flares up temporarily when I exercise (running or long cycles). It is located in top right abdomen under ribs and flares up to shoulder and even back sometimes. Got all clear from gall bladder.
I also get some pain in my left side/back (kidney?) that comes and goes but this is currently not bad. Along with periods of proteinuria and 'moderate kidney disease' (creatinine high, low egfr). Tired of being ignored by doctor who blames everything on stress.


Need help my liver function test numbers were slightly high I’m scared bc I take gabapentin and seroquel my drs office has me worried about liver

Failure and dying my numbers were 36 and 37 chart online says normal range is to40 my dr office says their charts only go up to 32 and 33 for liver function level scared who can help me? Also my sugar was 101 and had just eaten lunch also sodium was5 points high #LiverFunction #liver #BipolarDisorder #HashimotosThyroiditis #MyalgicEncephalomyelitis #Bipolar2Disorder #BorderlinePersonalityDisorder #PolycysticOvarySyndrome #Diabetes

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