First posted on August 28, 2014.
Well, clearly I’m really great at keeping up with this……
Let’s try again.
Hi whoever bothers to read this – you are awesome 🙂
We are in Cary, NC now, which is in the Raleigh area. Yup, we stayed in North Carolina! And get this, I think I am okay with it. Life is going crazy around me, and I have the strangest sense of peace. The only explanation for it is my Prince of Peace. God must be doing something big because I have never been through anything like what I’m going through right now, and God has given me peace. Yes, I have times of complete and utter fear, but it doesn’t consume me. I am keeping my head above water.
Maybe you’re wondering what exactly I’m alluding to. Well here is the short version:
In May, I was diagnosed with a liver disease called Primary Sclerosing Cholangitis. To put it simply, PSC (just call it that – it’s way easier) causes a problem with the liver’s bile ducts. Normally, the bile ducts look like a tree with many branches, but in my MRI’s, the branches are very blurry and withered looking, which means bile cannot flow through my liver the way that it should. This causes damage to the liver, which leads to eventual cirrosis of the liver. The only way to fix this problem is to get a liver transplant. (PSC can reoccur even after transplant but does not always. The numbers vary but from what I’ve found, 10-25% of people experience PSC again post-transplant). PSC’s cause is unknown but it is thought to be an auto-immune condition.
My diagnosis came as a result of intense dizziness that landed me in the hospital. During that time, I underwent MANY tests and procedures, and after 9 days, I was finally released. I was then referred to a liver specialist in Chapel Hill at UNC. I cannot say enough great things about my doctor and the team there. It truly is a great hospital and I am very blessed to be taken care of there.
Life since then has been a complete whirlwind. For awhile after being released, I was doing better. However, my jaundice was not going away completely and just recently I noticed it was worsening. Yellow is not a good color on me – it never has been – and the vain part of me hates having yellow eyes and skin… but at least this increasing yellowness alerted me that something was wrong. Immediately after arriving in Cary, I was seen by my doctor. I was alone at the appointment because it was literally Justin’s very first day at his new job, and my doctor informed me that my liver levels are worsening and that he foresees transplant being needed much sooner than first anticipated, perhaps within the year.
So now, at 23 years old, just 2.5 months after diagnosis, I am undergoing evaluation to be placed on a liver transplant waiting list. My life has done a complete 180 in a matter of weeks. And yet, I can see God everywhere in this. I know that He wanted me in the Raleigh area so I would be close to Chapel Hill. I know He wanted me to continue care with my current doctor and not have to switch like I would have needed to if we’d moved elsewhere. I know that He gave Justin the job he has so that we would have adequate health insurance to assist with this huge surgery. And I know that God is holding me together, because there is no other explanation for my ability to get up every morning and face the day. Yes, I am sad. Yes, I get angry about all of this. But mostly, I am truly doing okay. I am relying on God to get me through this. I can feel His strength in my weakness. Even though this trial brings a lot of unknowns, I know that I am in the palm of His hand and there must be some reason for all of this.
So why am I sharing all of this?
I think it would be a waste to not share my experience. If I can help one person feel less desperate, less alone… no matter if it’s in a health situation or otherwise, then I will feel like this disease had some purpose. I’m not sure how God will use this trial or how He will use me, but I think sharing my story is the first step.
And now a shameless plug – if you pray, will you please pray for me? and don’t forget my husband. He is – what word can explain it? – remarkable. He holds me together when I’m falling apart and is always pointing me to Christ. And my family. Pray for them, too. They are the most amazing group of people and I am eternally grateful to be born into their flock 🙂
And if you don’t pray – talk to me about God. I’d love to tell you about Him.