Primary Biliary Cirrhosis. (Actually now it's Primary Sclerosing Cholangitis.)

Dear Friends,

It is hard to put into words what I’m feeling right now. Scared, confused, angry, depressed, hopeless, hopeful… I keep going over and over what my doctor said to me this morning. I have Primary Biliary Cirrhosis. This is a very rare disease that is connected with my Ulcerative Colitis. Only about 2% of UC patients develop this disease. It is incurable, and right now there are no known treatments for it.

To explain this disease a little bit… basically the ducts (tubes) coming out of my liver are inflamed and could possibly have some blockage. This would explain the pain I felt a couple weeks ago. The pain has subsided, but the inflammation is still there. This is a progressive chronic disease that could (and most likely will) spread to my entire liver. If this occurs, then the only cure would be a liver transplant. I asked my doctor how likely it is that this would happen, and he told me I might not need a transplant, but usually people who have this disease eventually need to get it. There is also no timeline for this disease. It is usually slow-progressing, but the last time my doctor told a patient that, the patient needed a transplant 6 months later. Needless to say, it’s hard to know what is going to happen.

The plan right now is for me to get an endoscopy next week so they can check out what’s actually going on. I’m at a greater risk for cancer because of this inflammation, so they want to make sure there’s no cancer in there now (please be praying that there’s not – I don’t think I could handle something like that also happening). After that I will need to do a follow-up with my doctor, and then in the next few months I should be set up to visit the Mayo Clinic. I feel very blessed right now to be living in Minnesota and only an hour away from the Clinic. From what I’ve heard it sounds like they have some experimental treatments right now and they have programs for exactly the disease I’m dealing with. What a blessing.

I just heard the news this morning, and I already feel so supported by everyone around me. To all of you who have offered your encouragement and prayers, I feel utterly grateful. I am beyond words – I can’t tell you what it means to have a support system like all of you. I put in my two week’s notice at work – I know that some of you may think that this was a rash decision, but I know it is for the best. I can’t spend my precious time and energy on that job when I should be focusing on staying sane so I can stay as healthy as I can. My emotional and mental health really does play a factor in my physical health. I know I’m going to go crazy not working, but thankfully I have my final online class to work on, so that will keep me busy for at least the next couple of months.

My parents are flying in to see me tomorrow, and I’m so grateful for that. I’m so excited to see them. Getting the news like I did today made it so much harder to be away from my family. Please don’t misunderstand me, though. I have the absolute best husband in the world. He has been so caring, so compassionate, so loving… I don’t know what I would do without him. He is my rock and my best friend. I feel so awful putting him through this, but I am so grateful for his patience and understanding. If any of you see him or talk to him, please let him know how great he is, because I can’t tell him enough. God knew what He was doing when He gave me that man.

I know that God is in control. I know that since the beginning of time He has known exactly what is going to happen with me, and He knows how He will be glorified in everything. If I’m being totally honest, I’m having trouble not being angry right now about the fact that I not only have one chronic illness (UC), but now I have a second. Both could require major surgeries in the future and could also make me very sick. It’s so true that man plans his life, but the Lord orders his steps. Before all of this started happening I was hoping to go to grad school and get my Master’s. It’s looking now like that will be put on hold indefinitely so Eric and I can focus on what’s really important – our relationship and building our family. Please pray for wisdom as we try to figure out the direction of our lives at this point. I have no idea where we’re going to go from here, but I’m desperately trying to remember that the Lord is in control and He knows what He’s doing. It’s been a whirlwind of events lately, and I’m really just wanting everything to slow down. I don’t think it’s going to, but I can hope, right?

Praise God that He has given me good health thus far – my UC isn't active right now, and that is something to definitely praise the Lord for. It has spread to my entire colon now instead of just affecting part of it, but the fact that it is dormant at the moment is huge. Please pray that even though I have all this stress that it remains in that state.

Thank you all again for your prayers, thoughts, and encouragement. You all mean so much to me, and I am grateful for each and every one of you. I covet your continued prayers, though. I need them more than words can say. I need the Lord’s presence and comfort more than ever right now, but I’m struggling to open my Bible because I don’t even know how to feel towards God right now. Truly. Call me a heathen, tell me I need to have more faith… I am simply struggling not to be angry with Him right now and to draw near to Him like I know I need to.

For those of you who have read through this long post, thank you for sticking it through. You’re a true friend, and I’m grateful for you.