Crash Test Dummy

Doctors appointment this week. Knowing life expectancy from diagnosis of liver cirrhosis is 10 to 15 years.  I am almost 20 years post-diagnosis with 30 years from initial bloodwork showing liver function was a problem.

When I opted for gastric sleeve there wasn't research to back up my thought for how it could help the liver.

Doing all the dieting over the years and putting my liver through a weight roller coaster of ups and downs is not reducing stress on liver.  My thought was gastric sleeve can maintain steady weight which ultimately will benefit the liver.  The liver won't have the consequences to keep up with increased cell production and decreased cell production related to weight.  

My appointments since surgery have not focused on weight. I have maintained about 100 lbs weight loss since surgery September 2019.  The discussion has turned to improving living liver tissue.  Cirrhosis is scar tissue and basically dead cells that do not function as liver.  The more scar tissue there is the less my liver is functioning.

As of 3 years ago, I am Stage 4 Liver Cirrhosis.  My doctor stated it as if I forgot but we both know we are in unchartered territory.  I said, "I look at it as my liver will do a 180°.  By the time my skin shows jaundice or yellow I am already behind and have to hope a liver is available."  

She said, "Yes, you are right and I am glad you are seeing it that way."

She then said, "You have history of pancreatitis."  I confirmed her statement.

I reminded her of the odd situation.  My dad was complaining of symptoms for a year, he had multiple tests all showing normal results.  Then I had the same symptoms.  Pain on my left that turned severe which if I am saying that it is pretty bad.  I have a high tolerance and only seek medical help if needed.  

I went to ER where literally everyone on the ER floor went to lunch and left my mom and I in the ER after they took my blood.  I waited and over an hour with no one in sight to even ask what is happening.  I opted to leave and self manage pain which meant I spent a week not eating only able to lay on the floor going through waves of pain or sleep.  

I was charged $3000 for my non-visit via my deductible that I had to pay.  Another reason I do not go to doctor unless I need to.

Once my pain subsided after a week my dad ended up coming over jaundice.  Then we were told pancreatic cancer.  Either I am so empathetic I got pancreatitis to be able to confirm my dad's symptoms or it is just a very strange coincidence.

Confirming history of pancreatitis my doctor said she had an offer.  

I am used to this type of request.  I have been a crash test dummy for many medical treatments.  Glucophage treatment for PCOS when it was only used for diabetes. A patch infused with scar reducer that I was supposed to wrap around my head each day to me that plastic surgeon was a quack and I lost the patch as soon as he gave it to me. What 18 year old wants a patch on their forehead 24/7 wrapped with either a headband or guaze as there was no other way to keep in on my head wound.  I was the first in my family to take antidepressant/anti-anxiety meds.  I was even signed up for a trial for liver disease with U of M Hospital but in the time it too for me to get appointment the trial had failed and wasnt available.

Wanting to be a nurse I knew how nervous I was giving my first intermuscular shot or starting IV.  So I always all the students to start my IVs, provide shots, do assessments or observe appointments.  Learning and having an understanding patient is so appreciated to the student and I know this first hand.

Medical research is on going and continuous.  I feel like the more research the more knowledge which means more successful advancements.  I also understand every body is different and just because it is "normal" does not me it is your body's normal.

She said one of the GLP-1 has been FDA approved for Fatty Liver treatment.  My eyebrows went up and she knew my thoughts.  She said, "You and I both know there is no research on Liver Cirrhosis."  She has prescribed and had other patients have good success with GLP-1 for their fatty liver.  

She wants me to take the GLP-1 to see if it improves my liver function tests.  She reiterated my weight and any other symptoms are not the reason for me to take it.  It is simply to see how it effects my liver function.  

My results could help others with cirrhosis or more advanced liver disease.  I have always been my doctors youngest patient with cirrhosis.  I was youngest at 24 and now even at 43 most patients are still 20 years older than me who have test results similar to mine.  I am now my doctors longest living cirrhosis patient by about a decade.

She then said, "My biggest concern is one risk factor is pancreatitis taking the GLP-1."

My liver complications have already caused my gallbladder issues, enlarged spleen, anemia and a new normal of low hemoglobin.  Do I add pancreatitis to the list?

This is a difficult decision.   Knowing my dad and his grandpa died of pancreatic cancer matched with my mom's side of the family with generations of liver failure and cirrhosis.  This genetic lottery is a gamble.

I have a month sample to see if I can tolerate it.  She will submit to insurance as liver treatment.  Knowing I am a living case study for medical professionals sometimes feels like I should live in a petri dish.

This is a tough choice to make.  

Amaysing Thoughts