Thursday, January 29, 2015

Health Update: A Diagnosis Q&A



Happy Thursday friends! Anyone else beyond ready for Friday and think this week seemed to drag on a bit too much? I can't wait to be done work tomorrow and spend the weekend moving into my new house! 

Back in December, I posted about my health and a few things I was being worked up for. If you're new around here, long story short- I had high liver enzymes and symptoms of severe itchy skin as well fatigue and weight gain. I underwent a number of tests including an ultrasound, chest CT, multiple lab draws, and at the start of January when we still had no answers- a liver biopsy. It was an extremely stressful few month with lots of tears and frustrations but today I am somewhat relieved to finally have a diagnosis. Here's a little Q &A on my diagnosis and what it means for me...

Q: Diagnosis?
A: Primary Biliary Cirrhosis, a form of liver disease that affects the bile ducts within your liver and the way you process and excrete bile out of your body. 

Q: How do you get it?
A: My doctor seems to think that due to have 2 family members pass away from liver cirrhosis that were nondrinkers, I am at a pretty big genetic predisposition for liver issues- aka liver disease. 

Q: Is it treatable?
A: YES! While PBC is not curable,  medicines are able to slow down the progression of the disease, as well as help your body process bile. 

Q: What medications am I taking?
A: So far I am taking a medicine 3 times a day with meals, as well as a powder that mix with orange juice and drink first thing in the morning. The powder is probably the worse and it's definitely taken me some time to get used to it. 

Q: (and probably what I get asked most) Is this because I drink and can I still drink?
A: While I am a lover of wine and used to have a glass 3-4 nights a week, my doctor has assured me that this was in now way caused by my drinking or alcohol. It's unclear why people get PBC, other then genetic reasons and certain environmental factors- nor alcohol related. I am allowed to drink but do intend to scale back quite a lot. 

Q: What is my prognosis?
A: PBC is very much a disease that you can live with and treat the symptoms with medications. My doctor's main concern about my disease is that I am extremely young to not only be diagnosed with PBC but also to be showing symptoms. Most people do not get diagnosed with PBC until they are 35-40 and find out through a routine blood check and discover they have high liver enzymes but no symptoms. People that are diagnosed around that time then start to experience symptoms 5-10 years later. I first started noticing my symptoms back in mid July, meaning my disease technically was starting around 5-8 year ago. Essentially this just means that my disease is a bit more aggressive then most and needs to be carefully monitored. 

Q: Will I need a liver transplant?
A: At this stage in the game- no way! While my disease is aggressive and will need to be more closely moniotred then most, I am hoping that with medication I will live a normal healthy life. PBC is the number 2 reason for liver transplant but right now I am not even thinking about that. 

Q: What does this mean for everyday living?
A: The most important part of my diagnosis and how it will affect my life is to take my medications. I am absolutely horrible at remembering to take any medications and am fortunate that up until now I haven't had any daily medicines. I also need to be conscious about what I am putting in my body and making sure I am drinking a lot of water. People with PBC tend to retain water more then most, hence my notice in weight gain. Making sure I drink enough water will help with this, in addition to a low sodium diet. 

Q: How am I feeling about everything?
A: At first I definitely felt a bit overwhelmed and scared, as would anyone hearing that they have a form over liver disease. I immediately thought I was way too young for this type of diagnosis and was a bit annoyed and frustrated that it would be something I would have to deal with the rest of my life. Since then, I have had a few weeks to take everything in and get into a routine of my meds and adjusting my lifestyle and so far so good. While I still itchy occasionally and my sleep isn't great yet, I am hoping in time both of these will work themselves out and I will go back to feeling like myself again. Working in a hospital, I also had to remember that this could have been much worse and I am extremely lucky to be as healthy as I am and surrounded by an amazing support network. 

Q: What now?
A: I have a few more easy tests to look at my vitamin levels and bone density, as those are things that can be affected by liver disease. I will follow up with my liver specialist a few times a year but should be fine if no complications arise!


While I was unsure if I wanted to post about my diagnosis, I am glad that it's out there and I am able to share about it on my blog. It's very personal and something I am still working through but as always, the blogging world has become a part of me and I am always thankful for the support and encouragement I have gained through my blog. If you are still reading- thank you and I apologize for the length post!

Here's to getting Thursday out of the way and onto the weekend! 
Yours truly, 
Emily Ann



5 comments:

Tess said...

It sounds like you have an incredible attitude about the whole ordeal! You are so young to through this, but maybe it's a blessing in disuse to start learning how to treat, manage, and thrive. Keep us posted on how you are feeling but I hope it's no where but onward and upward from here.

Annie {Home of Malones} said...

Thanks for opening up Emily. I know this wasn't easy to share, but now you have a lot more thoughts and prayers headed your way for years to come. It's such a blessing that you were proactive and already have a handle on everything which I think will serve you well from this point forward! xoxo

Kristina @ Medicine and Manicures said...

I'm so sorry to hear about this unfortunate diagnosis, but I'm glad to hear that you're doing well and are only making a few life adjustments. I hope you start to feel much better ASAP and would love to see more updates!

xo, Medicine & Manicures

Ally Harding said...

It has to be such a relief to finally have a diagnosis! Now you can treat it and live a somewhat normal life! I was born with a genetic kidney disease and have to take blood pressure meds for the rest of my life so I get it! Doctors never seem to be too concerned so I try not to be either. I too was diagnosed at a young age, 20, so it's scary to think most ppl don't get diagnosed till 30-40 but worrying about it doesn't change a thing. All you can do is take care of yourself! So happy to hear you're doing well considering. You have such a good attitude!
Ally - Life as I know it

Kerry said...

You are amazing. Your attitude is everything! Thinking of you and praying for you always, Em. Can't wait to see you sometime soon!!!