I remember sitting in bed one night after I was diagnosed with thinking “Okay, I have Budd Chiari Syndrome. Now what?” So many thoughts were going through my head but trying to figure out what I was supposed to do with that diagnosis was a struggle. I knew I was going to have to work my way through it like I have always done when faced with a problem. But how?
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One minute I was a mom excited about finding out we were pregnant and the next, I was worried I wasn’t going to live to see my boys grow up. That thought alone was a reminder that there was no other option. I was going to fight this illness.
Those first few months were not easy. They were filled with so many what ifs. And now 10 years later I’d like to think I have a much better hold on it. I’m making the most of the health I have. I only wish I would have known then what I know now. It took awhile for me to figure it all out but if you are new to life with Budd Chiari Syndrome, here are a few things that made the beginning a little easier.
After being diagnosed with Budd Chiari, there is an overwhelming amount of information. This disease is literally one in a million, so chances are, you’ve never heard of it before. Doctors will come at you with a freight train of information about diet, medication, lifestyle changes, symptoms, restrictions, and tests. It’s a lot to say the least. The most important thing to do during this time is to pay close attention because try as you might, this is your new reality.
Whenever a person is diagnosed with a new health problem, whether it’s Budd Chiari or anything else, it’s important to remember that you are your best advocate. You need to be informed on why you’re taking each and every medication, and what the best treatments are for you. Your doctor or team of doctors are a source of information and will become your lifeline.