So after I got diagnosed with Celiac Disease my GI doctor decided to run the gamut of tests to see what was off in my body. We already knew my iron was off and so I got to go on iron for that but he attributed that to my celiac and my other issue (previous blog posts), but he also said other things could be off so why not test some more.
Can I just say I have never had any issues getting blood drawn. My mom hated getting her blood drawn as her veins always rolled but I never had an issue, oh wait spoke too soon. Sometime in the middle of all my diagnosis’s and blood draws my veins decided that they had enough and decided they were going to be stubborn. From there on out every time I went in the lab people would have to spend 10-15 minutes digging in my arms for veins and let me tell you not fun!
Anyways so my doctor noticed on my blood draw that my liver enzymes were slightly elevated and so he decided I needed a liver biopsy. That scared me a lot. I questioned him thoroughly because I had been on multiple medications that would impact my liver and so didn’t want to go through with it if it was just those medications. He pushed back and wanted me to have it and after much debate back and forth decided to go through with it.
Now I didn’t get a lot of information on what the biopsy would entail just was told to plan to be there with someone to drive me home after 4 hours. Needless to say my mind started right up on the anxiety. If you look things up online it makes it even worse… don’t!
By the time I got there for my biopsy I decided what will be will be and had shaken most of the fears away. They took me first to get blood drawn (yay!) and then I went back where I got an IV put in for getting something to slightly take the edge off. They then took me back to have the biopsy done. First before I tell you about the biopsy I will say I loved all of my doctors and they immediately put me at ease with the process.
That being said for me it was not a pain free process. The doctor who was doing the biopsy said for some they feel no pain at all and others its a bit more it just depends on how your body takes to the meds. Mine was lucky in that I felt it. They took 5 samples from me and on was fine but the others you could feel everything. It at least was a quick process and the doctor did his best to distract me. After they get done with that they then hold pressure on the area for 10-15 minutes to stop any bleeding and then you lay for a few hours after. They monitor your blood pressure every 15 minutes.Recovery was fine, I had a bit of discomfort that day but nothing like my surgery.
Then came the waiting game. They told me it would take 3 days to hear results. By 5 I still didn’t have any. Finally a week and a half in (I did get an update from the doctor telling me it was taking longer) I found out I had been diagnosed with early stage of PBC Primary Biliary Cirrhosis.
PBC is another auto immune disease (they run in groups). Basically my body is attacking my bile ducts. Slowly but surely my liver will get cirrhosis and need to get a transplant. This could take years and years though as it depends on the stage you are in when diagnosed and how well your body responds to medication. I am now on Urisidol capsules twice a day and I will be on them the rest of my life.
Some of the not so fun things about this disease is you can develop terrible itchiness, dry eyes, dry mouth, teeth issues, extreme fatigue, amongst others. Not everyone has every symptom. Me currently I only have some mild itching as the disease progresses though it could get worse. I’m doing my best to keep up with my family though and not let this diagnosis slow me down. I’m still in the try to accept this phase but hopefully I will get there.