Primary Biliary Cirrhosis

Create a new post for topic
Join the Conversation on
Primary Biliary Cirrhosis
225 people
0 stories
6 posts
About Primary Biliary Cirrhosis Show topic details
Explore Our Newsletters
What's New in Primary Biliary Cirrhosis
All
Stories
Posts
Videos
Latest
Trending
Post
This photo may contain sensitive content.

My Open Letter to Mayor Goodman

Dear Mayor Goodman,
After seeing your interview with Anderson Cooper I was extremely disturbed. After thinking for a bit my thought was maybe you don’t know any citizens with health problems that could be effected by casinos opening up. So I thought it would be best to introduce myself.
My name is Chantel Schwake and I have lived in Las Vegas since 2018. I am a registered voter here in Nevada and I am very happy to say that Las Vegas is my home. I work with Caesars Entertainment and have an office in Caesars Palace. I truly love my job and miss my coworkers and would be devastated if any of them got COVID-19.
The picture I have attached was before the pandemic. It was during my transjugular liver biopsy in 2018. This was not my first medical procedure and won’t be my last. I have Primary Biliary Cholangitis (PBC), fibromyalgia and endometriosis. All cause me pain on some level and all require different medications and procedures to help manage. The results of my liver biopsy less than 2 years ago revealed that I am in stage 1 fibrosis and it’s going to keep getting worse and eventually lead to liver failure. There is no cure for PBC and we are doing whatever we can to slow down it’s progress. In February I had a talk with my liver specialist about a liver transplant and that it’s something I needed to start considering in my future and planning for. Due to all of this I have a weak immune system. If I get COVID-19 I know what my chances are of survival.
Madame Mayor I am telling you this so you may possibly understand one of the stories of the many citizens that your decisions effect. I am not telling you this so I may have your sympathy, I am telling you this so you may keep someone like me in your thoughts when it comes to making decisions that puts my life in danger.
When all this started and reports came in on what happens to your body when you get COVID-19, I looked at my husband with fear and said “I don’t want to be a number adding onto the statistic of deaths.” We want things to go back to normal and not have to worry about money and supplies but we also hope our government won’t risk our lives and health in doing so. I have worked hard to have a career, a family and as much of a normal life as possible despite my health.
I beg you, madame mayor, please don’t make me or anyone else a statistic.
#PrimaryBiliaryCirrhosis

Post
See full photo

Losing my hair

I lost this in the after my shower. I have hair above my shoulders, not quite ear length but in between. I lose this all the time. Not to mention all the hair I pick off my clothes and car and furniture. The hair on the back of my head is so thin. I do not sleep on my back or spend any length of time w the back of my head on anything. I have fibro, chronic pain, primary biliary cirrhosis-congenital not induced. What is happening to me????

4 comments
Post

#PrimaryBiliaryCirrhosis

Anyone want to talk? I’ve been living with PBC for almost 5 years. I knew something was wrong before but it wasn’t showing it’s ugly head. Mine is the pain it causes and the constant fatigue and not being able to live the life I had. I morn the old me. I have limitations now and to be honest I push myself, one life to love one life to lead, I try to stay very positive and love to travel. Love my family and my pets, I’m tired of letting this rare disease become me. Had a biopsy earlier this year and stage 2 and start of cirrhosis. Was a big shock and again had my pity party! But it’s changed me, now I’m trying to eat cleaner and stay positive. Have several good PBC friends who are now on the liver transplant list. I pray I won’t ever get to this stage, but we know how fast our lives can change with PBC, stay strong sisters and brothers.

#Pbcaintgoingtoownme #Pbc #Rareautoimmuneliverdisease #Pbcwarrior #Pbcsucks #Pbcstrong #Crueldisease #Pbcsisterhood #Pbcgreenribbon #Pbcliverdisease