My PBC Journey

[Miamomma]

GI watched enzymes for 5 years 2015-2020. No symptoms except GI sent me to Ohio State in Dec of 2019 to make sure she wasn’t missing anything . Ordered MRI of liver—-best test to slice and dice liver. Found two spots of cancer on top ridge of liver and did a Microwave ablation to kill it. Successful. MRI every 3 months. MELD score was high. In Jan 2021 found 2 spots cancer at different place on top of my liver. Five radiation treatments. In Sept. 2020 started testing to get on the National Liver Transplant List . Placed on list Nov 23, 2020. Trying to figure out how I can lie flat to get my MRI on Jun 24 to assure cancer is gone. I have pleural effusion in my right lung—have had 5 thoracentesis done since 4/30/2021. They have removed 1.5 liters of fluid each time. Also…l have to take massive doses of lactose along with my xifaxin to keep the ammonia level in my liver down. I’ve had hepatic encephalopathy 5 times due to high ammonia and ended in in the hospital. That is scary..for 3 days you don’t make sense..can’t answer the doctors and scare your family to death. I don’t mean to scare anyone but my PBC progressed quickly. I’m thankful for the University Hospital (115 miles one way from my home one way) I go to, in addition to specialists I have nearer my home area. My CNP is wonderful and is on top of things. I have very few good days.

Miamomma

[sleepingbeautycan]

I am so sorry that you are not having many good days any more. I am praying for a transplant for you.

[Miamomma in reply to sleepingbeautycan]

Thank you.

[sleepingbeautycan in reply to Miamomma]

How is your mental health. Your post reminded me of me. Very fact based and very little emotion.

I'm sorry if that is too intrusive. Only respond if it will help.

[Miamomma in reply to sleepingbeautycan]

I’ve shed a few tears. I just want it to be over. I have confidence and faith that the Lord will provide. I’m thinking I have to get worse (MELD) score and all before my prayers are answered. Not intrusive at all.

[sleepingbeautycan in reply to Miamomma]

You can do all things through Christ who strengthens you. I will pray for you.

Tears are good. They release stress (mostly}.

[Sozo in reply to Miamomma]

🙏🏻🙏🏻🙏🏻

[Odieweb]

Thinking of you and the challenges that you are facing. Best wishes and I also hope you get to have better health soon.

[Miamomma in reply to Odieweb]

Thank you!

[HummingBirds1944]

amazing to have such dedicated medics...

[Stub007]

What you have undergone is amazing, and you are a trooper.

My thoughts and prayers are most certainly with you and family.

Don