Challenges of Living with Budd Chiari Syndrome

Not Being Able to Drive

I actually never learned how to drive. There are no personal cars where I grew up. After school David and I lived and worked together so he drove and I just never got around to getting my license.  It was the other piece of my “go back to work” plan that changed when I was diagnosed. Another thing taken away by Hepatic Encephalopathy.

Today, driving isn’t an option for me because some days I don’t even know right from left. I get lost in my own home. I often joke that I am not a stay at home mom, I am a stuck at home mom. It’s challenging knowing that unless I’m going to the hospital, I’ll probably not even leave the house. And trying to get everything done on the weekends when my husband is home to drive me. As much as I wish I could do it myself, I know that I can’t.

When I got the letter telling me I was officially on the transplant list, I started counting the days. I blogged weekly stats of how many people were listed and I would look at my meld score and gauge where I was. 10 days. 100 days. 1 year. I think after four years I stopped counting. It’s been over 10 years now. And even though I have days where we question me needing home health care, or someone to check in on me while David is working, I am still waiting for my liver. There are just not enough registered organ donors.

My only option is to get sick enough to move up the transplant list. The doctors tell me that most likely it will take my other organs shutting down for that to happen. I have had a heart attack. Still not sick enough. My kidneys might fail or my heart might get weaker. This is a challenge that I am terrified of because no one wants to be THAT sick. I want so badly to live! But it looks like I’m going to have to face death first.

Medical and Medication Costs

I never thought much about healthcare until the bills started rolling in. Sure I had bills here and there before, but nothing like what follows a chronic illness diagnosis. I often find myself saying how thankful I am for insurance because I literally could not live without it. But, I have private insurance and medicare and still have bills piling up. Every year I pray for the day our deductible is met. Which is usually just 2 or 3 months. With just insurance alone we would spend more monthly on medication than we did on car payments, when we had two vehicles.

Over the years I have learned a few things about getting medications. Like manufacturer’s coupons. I feel like I spend hours every month on the phone making sure my bills are correct, checking that my prescriptions are covered with the coupons and trying to get insurance to cover certain medications. It’s frustrating and challenging at times, but we have to speak up for what we need.

Mental Health

It’s a lot to take in: Budd Chiari. Liver Disease. Chronic Illness. And it doesn’t just wear on your body. It breaks down your spirit and gets to your head. Anxiety and worry set it, then depression follows. Some days it feels like the weight of the world is on my shoulders. Trying to stay on top of my everyday duties as a wife and mom plus trying to take care of myself and keep my health in check is hard to balance. It’s a challenge that I am always up for even if it seems impossible at times.

Budd Chiari Syndrome has without a doubt changed my life. It is hard, frustrating and overwhelming at times. It has caused me to set aside my dreams and to change plans. But I will face each and every challenge that it throws my way and continue fighting to live life to the fullest.